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Chemotherapy Colorectal CRC Eloxatin (oxaliplatin) fluorouracil 5fu Irinotecan Patient Stories Treatments

Raquel’s Stage 4 Colorectal Cancer Story

Raquel’s Stage 4 Colorectal Cancer Story

Interviewed by: Alexis Moberger
Edited by: Katrina Villareal

Raquel A. feature profile

Raquel first noticed symptoms in 2019, like pencil-thin stools, pain, bloating, and blood in her stool. She then started getting full quickly after eating.

When she finally went to the doctor after developing severe pain, she was dismissed and told, “It was just anxiety.” She then ended up in the emergency room and was later diagnosed with stage 4 colorectal cancer, which had spread to her liver, ovaries, and lungs.

In sharing her story, she aims to raise awareness about rising colorectal cancer rates in young people and the importance of listening to your body.

In addition to Raquel’s narrative, The Patient Story offers a diverse collection of colorectal cancer stories. These empowering stories provide real-life experiences, valuable insights, and perspectives on symptoms, diagnosis, and treatment options for cancer.


This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.


  • Name: Raquel A.
  • Diagnosis:
    • Colorectal cancer
  • Staging:
    • 4
  • Initial Symptoms:
    • Frequent bowel movements
    • Pin-thin stools
    • Mild red blood in stool
  • Treatment:
    • Chemotherapy: oxaliplatin, 5-FU (5-fluorouracil), and irinotecan

I feel so confident that whether I can heal from this or not, I’m going to be able to handle it well. It’ll be okay. I’ve overcome other things in life and I hope that I can be an inspiration to people who are struggling.



Introduction

I’m 33 years old with terminal colorectal cancer. It has been such a huge part of my life that I have to remind myself that there are other parts outside of that.

I currently work in the tech industry and I’m very blessed to be able to do so.

In my spare time, I like reading and drawing. I’m very artistic and very recently, I’ve been posting more. I’ve been finding great connections on social media with other people who are going through the same thing as me.

I didn’t take my symptoms more seriously because they would come and go.

Pre-diagnosis

Initial Symptoms

I first started noticing symptoms in 2019. I was roommates with my best friend and she started to notice how often I was going to the bathroom. At the time, I was working in restaurant management so I figured I was probably eating too much of the food at work or eating too many processed foods.

I started changing my diet, trying to eat healthier and more protein but also using fiber supplements. I figured I wasn’t eating enough fiber and that’s one of the first things you read online about how to resolve diarrhea or bowel issues. That did help. The symptoms went away, but they would come back to plague me again.

Raquel A.
Symptoms Worsened

In 2022, I was working as a contractor in the tech industry. I made really good friends with people on my team. One of them noticed how often I was going to the bathroom and she said, “Raquel, are you okay?” I said, “Yeah, I’m fine. Maybe it’s the dairy in my coffee. Maybe I have a gluten sensitivity.”

At the time, I wasn’t concerned and wrote myself off. I dismissed my symptoms. But knowing what I know now, I was having classic colorectal cancer symptoms.

I experienced frequent bowel movements and pin-thin stools. In addition, any kind of blood in your stool is a huge red flag. It means something is wrong. The color, whether it’s dark or mild red, pinpoints where exactly that bleed is located. Mine was mild red. I didn’t have heavy bleeding, which is why I thought there wasn’t something wrong.

But another classic sign is getting full quickly after eating and that was a huge red flag that something was wrong. That happened from 2022 until when I got diagnosed in May 2023. Every time I took a couple of bites of something, I immediately felt so bloated.

I was actively dieting before my diagnosis, but despite how healthy I was eating, I could not lose weight, which I thought was strange. My stomach was so round and hard. I would later find out that the cause of some of my bloating was ascites. When you have cancer that is as advanced as mine, especially with colorectal cancer, the tumors start secreting free fluid. I had about a gallon of fluid in my stomach that they had to drain. That immediately relieved so many symptoms I was having with eating.

I didn’t take my symptoms more seriously because they would come and go. 

They’re not going to think of cancer when they see somebody who visually looks very healthy and young so I don’t necessarily blame her. At the same time, this dismissal of people who are like me is widespread because I know I’m not alone.

Symptoms Dismissed by Primary Care Doctor

It’s important to note that as a millennial—and I have statistically looked into this—half of us don’t have a primary care provider. That was the story of my 20s. I was blessed to land a permanent role in the tech industry where I had good healthcare and was able to schedule my first physical in 10 years back in May of 2023.

When you don’t go to the doctor for that long, there is a lot to talk about. I let my primary care physician know all of my symptoms, especially my bowel symptoms, and that I had severe abdominal pain somewhat recently. It wasn’t in one spot and felt very abnormal.

When I was talking to her about this, I could tell that she thought it was in my head. She scheduled me for a psychiatric appointment after my physical because she thought I had anxiety.

But now that I know so much about my disease, I know that they were classic colorectal cancer symptoms. Because I was so young, a woman, and a minority, statistically speaking, even just one of those categories is going to make you more likely to be dismissed in a medical setting and that is absolutely what I experienced.

Raquel A.

It was maybe three weeks after that physical when my cancer was found to be completely metastatic and had spread all over. I know that she probably felt some guilt because, after my diagnosis, they sent the information to my primary care provider before I was assigned to an oncologist.

I’m sure once she saw how bad it was, she felt guilty at the same time. She’s not the only doctor who has done that, especially when you’re young. Medical doctors are taught these statistics of colorectal cancer being an older person’s disease. They’re not going to think of cancer when they see somebody who visually looks very healthy and young so I don’t necessarily blame her. At the same time, this dismissal of people who are like me is widespread because I know I’m not alone.

It wouldn’t be until I had a liver biopsy that they would find the primary source of my cancer, which was colorectal, and I wouldn’t find out until later how incredibly it had advanced.

Raquel A.

Diagnosis

Getting the Cancer Diagnosis in the Emergency Room

I finally went to the ER. I remember that day so clearly.

I had severe abdominal pain that was migrating to my lower back and I almost fainted in my apartment. My intuition was saying that something was wrong so I went to the ER.

They did a full blood panel on me, which included the cancer markers CEA, CA 125, and CA 19. Mine were elevated. My CEA alone was in the 700s and anything above 30 is already a sign of cancer activity in your body. For mine to be that high means that my cancer was so advanced.

When I was in the ER, I felt that they took me seriously that’s why my cancer was found. The doctor knew something was wrong so she did that blood panel. I had an MRI, a CT scan, and an ultrasound. They did all those tests immediately.

The ER doctor told me that I had ovarian cancer because that’s where they found it initially. Based on the CT scan, the cancer was pretty advanced in my ovaries and my liver. It wouldn’t be until I had a liver biopsy that they would find the primary source of my cancer, which was colorectal, and I wouldn’t find out until later how incredibly it had advanced.

The metastases are in my colon, ovaries, liver, lungs, peritoneal cavity, and omentum. They found them through those tests within a week.

Everything happened so fast. I feel truly blessed that when I went to the ER, my cancer and the type of cancer was diagnosed so quickly. They ran all these tests, found my cancer, and immediately referred me to an oncologist. The next day, I was talking to an oncologist who then referred me to have a liver biopsy. A couple of days later, they found the primary source of my cancer.

Even though it’s very, very unfortunate how late my cancer was found, what an incredible experience for them to take me so seriously and find out what was going on. Kudos to the hospital that I went to. They took me very seriously.

Reaction to the Diagnosis

I don’t think I reacted like a normal person would have and that’s because I’ve had a lot of things happen in my life. I have a very calm demeanor. When things go wrong, I’m your go-to person to think logically and that’s how I processed my cancer diagnosis.

Even the doctor seemed really surprised that she said, “Raquel, you’re not even crying. I’m so sorry I’m not telling you good news.” I said, “You know what? It’s okay because no matter what happens, I’m going to get through it.”

I feel so confident that whether I can heal from this or not, I’m going to be able to handle it well. It’ll be okay. I’ve overcome other things in life and I hope that I can be an inspiration to people who are struggling. I feel like everything’s going to be okay. I told myself that even at the beginning of my diagnosis.

Raquel A.

My liver and lung metastases aren’t responding to chemo, but the metastases in my ovaries and colon are responding moderately well. My oncologist and I are trying to see what combination could help with wherever else my cancer is.

Raquel A.

Treatment

The treatment protocol and how they’re going to approach your diagnosis depends on your hospital. When I first got diagnosed, I was at a different hospital but for insurance purposes, I had to switch to a different one.

My treatments would have been a little bit different if I stayed with the first hospital because they wanted to start surgeries right away. They said, “You’re going to have a full hysterectomy. I’m going to be doing this in collaboration with one of our very renowned liver surgeons and we’re going to do this at the same time.”

But then when I switched to a different hospital, they told me, “We’re going to focus on chemotherapy. Let’s see how you react, shrink what we can, and then talk about surgery.” I understand the reasoning for that because they want to shrink as much as they can to lessen things going wrong during surgery or make it a little bit less risky.

Because I ended up switching hospitals, I’ve just been primarily I’ve been chemotherapy.

Being on Chemotherapy for Life

I first started with oxaliplatin. The side effects are not pleasant. It causes neuropathy.  Fortunately for me, we stopped that in December. I was on it for six months until the side effects started affecting my quality of life too much.

I have switched to 5-FU (5-fluorouracil) and irinotecan. They introduced irinotecan to see if that’s going to help my liver metastases because so far, I’m having a mixed response to chemotherapy.

My liver and lung metastases aren’t responding to chemo, but the metastases in my ovaries and colon are responding moderately well. My oncologist and I are trying to see what combination could help with wherever else my cancer is.

I have chemotherapy bi-weekly and for Christmas, I pushed back my chemotherapy because I didn’t want to be sick during the holidays. My CEA, one of my cancer markers, jumped when I wasn’t strictly on my bi-weekly regimen. If I ever stopped chemotherapy, decided I didn’t want to continue, or changed my protocol at all, my cancer would jump at that opportunity to be aggressive.

Raquel A.

I don’t have a choice as of right now. Chemotherapy is keeping me alive so I’m going to continue being on it bi-weekly. Fifty percent of people who have chemotherapy might need what’s called GRANIX shots.

The white blood cell count gets so low with chemotherapy that medications are needed to boost the white blood cell count to continue treatment. I, unfortunately, fall under that category so not only do I have my chemotherapy, but I have to have those shots to even have chemotherapy because my white blood cells get too low.

I’m very actively looking to find and get second opinions from hospitals that are willing to touch me and get some of this out because I know it would help me in the long run.

Looking for Other Opinions

As of now, they’re telling me that they don’t want to do surgery because of how incredibly advanced my cancer is. They’re saying that it might not be worth it.

However, I’ve read and seen from other people with colorectal cancer that they have better survivability with surgery because the more cancer is in your body, the more opportunities it has to spread and be aggressive.

I’m very actively looking to find and get second opinions from hospitals that are willing to touch me and get some of this out because I know it would help me in the long run. I will be traveling to MD Anderson and Memorial Sloan Kettering, hoping that they can do surgery on me, which will help extend my life. Even though I know it’s risky, I’m willing to do it because the alternative is being on chemo forever.

Raquel A.

Getting Help & Support as a Cancer Patient

Having the support of family and friends has been such a huge help and I give so much thanks to the incredible people in my life who have helped me through this.

Some things have personally made it a little bit easier, like trying to buy foods that are pre-cut or pre-chopped. I like getting frozen oatmeal because I can just microwave it.

I’m sicker some days than others and I have found that it helps to have plastic utensils so that I’m not thinking about washing the dishes. To alleviate some of the guilt of buying disposables, I buy the biodegradable kind. You never think about how much something like that would make your life a little bit easier, but it does.

Give yourself grace and find the little things that you deserve to make your life easier.

If I had advocated for myself sooner, my cancer would have been found sooner… Listen to your intuition. You know your body more than anybody else.

Importance of Self-Advocacy

Self-advocacy has been such a big part of my cancer journey because if I had advocated for myself sooner, my cancer would have been found sooner. A lot of people who are as young as me or even younger don’t have a primary care provider.

Maybe they don’t have health insurance and I understand that there is a money barrier to getting treatment for a lot of people. That’s why I’ve been speaking to people who are younger than me and are getting diagnosed with advanced colorectal cancer because of those barriers.

One of the reasons why I started to be so outspoken about my diagnosis is to encourage people to go to the doctor. It’s never normal to have blood in your stool, even if it’s a little bit. Something’s wrong.

Unfortunately, if you’re young, a woman, or a person of color, you have to advocate for yourself so much more than people in different demographics. I hope to inspire people to get the medical help that they need for their symptoms because I was invalidating myself.

Raquel A.

I went to my primary care provider and had my physical. I told her all of my digestive issues and bowel symptoms, and she said it was all in my head and that it was anxiety.

Other young people say in the comments on my social media, “This happened to me, too.” That’s one of the reasons why I’m trying to be so outspoken and raise awareness. I want people who have had the same experience to hear my story and say, “I need to take this seriously. Even if a medical professional says that I have nothing to worry about, I need a second opinion. I need to go to a GI specialist.” That is my goal in sharing my story. Don’t let anybody write you off. Get seen. Go to a GI specialist.

All it takes is one who will listen to you and help you. They’re out there. We just have to find them.

Raquel A.

Words of Advice

Listen to your intuition. You know your body more than anybody else. A medical professional is diagnosing you based on generalities, but you know yourself better than anybody so if you are having these problems, you deserve to see a specialist and get a second opinion. Don’t listen to the first doctor. Get opinions from a second or a third, especially if your symptoms are persistent.

If your symptoms are persistent and aren’t going away, then something is wrong, especially if you have blood in your stool. That should never be written off. Any kind of blood in your stool is a huge red flag. Pay attention to it.

You deserve to be listened to and taken seriously in a medical setting. If the first doctor isn’t taking you seriously, all it takes is one who will listen to you and help you. They’re out there. We just have to find them.

If you have been invalidated about your bowel health or your symptoms, follow your intuition. As much as we want to completely trust that they have our best interests, that they went to medical school and they’re knowledgeable, that doesn’t mean that they aren’t sometimes wrong and don’t make mistakes or misdiagnoses.

Go out there and fight for yourself. Fight for your health. I hope everybody who hears my story feels very validated to go and seek help.


Raquel A. feature profile
Thank you for sharing your story, Raquel!

Inspired by Raquel's story?

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More Colorectal Cancer Stories

Allison

Allison R., Colorectal Cancer, Stage 2C



Age at Diagnosis: 32
1st Symptoms: Extreme fatigue, unexplained weight loss, blood in stool, "blockage" feeling after eating
Treatment: Concurrent adjuvant (oral) chemotherapy + radiation, colectomy, oral chemotherapy
Michelle C. feature profile

Michelle C.



Symptoms: Felt like either a UTI or yeast infection
Treatment: Chemotherapy (carboplatin and paclitaxel), surgery (hysterectomy), and radiation
Kelly shares her colorectal cancer story
Kelly S., Colorectal Cancer Diagnosis: Stage 3 Colorectal Cancer Symptoms: Constipation, blood in stool, abnormal-smelling stool, fluctuating appetite, weight lossTreatment: Dostarlimab
Jason shares his colorectal cancer story

Jason R., Colorectal Cancer, Stage 4



Symptoms: Blood in stool, diarrhea, tenesmus, feeling run down
Treatment: Chemotherapy, radiation, HAI pump
Raquel A. feature profile

Raquel A., Colorectal Cancer, Stage 4



Symptoms: Frequent bowel movements, pin-thin stools, mild red blood in stool
Treatment: Chemotherapy (oxaliplatin, 5-fluorouracil, and irinotecan)

Categories
Myelofibrosis Patient Events

The Latest in Myelofibrosis: Understanding Promising Treatment Options

The Latest in Myelofibrosis

Understanding Promising Treatment Options

Edited by:
Katrina Villareal

TRANSFORM-1 Trial

MANIFEST-2 Trial

FREEDOM-2 Trial

XPORT Trial

Treatments to Help with Anemia

Other Treatments Being Studied

DALIAH Study

Calreticulin

The Use of Artificial Intelligence in MPNs

Following the American Society of Hematology Annual Meeting (ASH), Dr. Raajit Rampal of Memorial Sloan Kettering Cancer Center, Dr. Gabriela Hobbs of Mass General Cancer Center, and patient advocate Ruth Fein explore new treatment options.

Learn about success stories, dispel myths about experimental drugs, and understand the broader impact of trial participation on advancing MPN treatments.

Find out about the latest options for myelofibrosis patients, how to deal with myelofibrosis symptoms, and how factors like age, mutation status, treatment history, and personal preferences inform your treatment.

Learn about how the latest advancements may affect your care and get updates on exciting news about the pace and progress of myelofibrosis treatments.

The myelofibrosis panelists discuss momelotinib, fedratinib, selinexor, pelabresib, navitoclax, and other myelofibrosis treatments.


GSK
Karyopharm Therapeutics logo

Thank you to GSK and Karyopharm for their support of our patient education program! The Patient Story retains full editorial control over all content.

This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.



Introduction

Stephanie Chuang, The Patient Story Founder

Stephanie Chuang: I’m the founder of The Patient Story and, more importantly, I also got a blood cancer diagnosis of non-Hodgkin lymphoma a few years ago.

We have so many shared experiences in what we’re looking for and that’s what The Patient Story is all about.

We try to help patients and care partners navigate a cancer diagnosis primarily through in-depth conversations with patients, care partners, and top cancer specialists, like the ones you’ll hear from today. 

I want to give special thanks to GSK and Karyopharm for supporting our educational program. Their support helps programs like this more available and free for our audience. But we do want to note The Patient Story retains full editorial control of this entire program. A quick reminder that this is not meant to be a substitute for medical advice. 

Our patient moderator is Ruth Fein Revell. Ruth, can you share a little bit more about your story and how you became such a passionate advocate in this space?

Stephanie Chuang
Ruth Fein and husband Danny
Ruth Fein Revell, MPN Patient Advocate

Ruth Fein Revell: Welcome, and thank you for joining us. I’m Ruth Fein, a health and science writer. I’m also a patient and a patient advocate who’s been living with a myeloproliferative neoplasm of one type or another for almost 30 years.

I was diagnosed with essential thrombocythemia when I was 38 years old and raising two young boys. I had had symptoms for many years, but they were disregarded or misdiagnosed. The most troublesome of which was severe, debilitating headaches with blind spots where I literally couldn’t work for hours at a time. I also had bone pain that I experienced for years.

What started as essential thrombocythemia transitioned to polycythemia vera and then progressed to myelofibrosis, which is where I am now. I’m very fortunate to be on a clinical trial that’s working so well that my life is wonderful. I also recognize that everyone isn’t in the same position as I am as there are a lot of people who suffer greatly from myelofibrosis.

I’m speaking with two world-renowned experts in MPNs, Dr. Raajit Rampal of Memorial Sloan Kettering Cancer Center and Dr. Gabriela Hobbs of Dana-Farber/Harvard Cancer Center. Both of you are very, very involved in the patient community and giving back through your knowledge and also taking time to do interviews like this so thank you for that.

We’ll dig into what’s been reported recently at ASH, the annual meeting of the American Society of Hematology where a lot of reports come out. Some of them are quite exciting.

Raajit K. Rampal, MD, PhD

Ruth: Dr. Rampal, give us a little bit of your background, why and how you became interested in MPNs, as well as what your practice looks at.

Dr. Raajit Rampal: I’m a physician-scientist and I lead the MPN program at MSK.

My interest came from the biology side. I’ve been working with Ross Levine for a number of years on the lab side. It became clinically interesting based on what I was learning in the lab so I’ve taken on clinical practice and doing clinical trials for patients in MPN.

This is a field with such an unmet need for effective therapies. Wanting to be at the forefront of that and trying to deliver change where it’s needed have always driven what I want to do. This was the perfect intersection of my scientific and clinical interests.

Dr. Raajit Rampal
Dr. Gabriela Hobbs
Gabriela S. Hobbs, MD

Ruth: Dr. Hobbs, would you tell us a little bit about yourself and how your interest in MPNs began?

Dr. Gabriela Hobbs: I am the clinical director of the leukemia service as well as the MPN program at Massachusetts General Hospital in Boston. I’ve always been interested in hematology as far as I can remember, and I was very fortunate to do fellowship training with Dr. Rampal.

For me, myeloproliferative neoplasms in particular are such a rewarding group of patients to take care of. It merges everything that I love about being a physician. I can have very longitudinal as well as very intimate patient relationships with the patients whom I take care of. From the clinical perspective, I found taking care of patients incredibly rewarding and also very varied.

From the scientific perspective, when I was an undergraduate student, we started seeing some of these oral-targeted agents being approved and I knew that was something I wanted to be involved in for my career.

Being a clinical investigator who’s able to see clinicians like Raajit Rampal doing investigations in the lab, finding new targets and new drugs, and being the person who helps take that to clinical trials to the patients is incredibly rewarding.

The most common symptom of patients with myelofibrosis is fatigue, which is probably one of the reasons why myelofibrosis and the other MPNs sometimes take a while to get diagnosed.

Dr. Gabriela Hobbs

Symptoms of Myelofibrosis

Ruth: Myelofibrosis is rare. Some practitioners don’t see very many MF patients. Some patients who are diagnosed with myelofibrosis don’t have enough information or are misguided at times. What do you each see as the major symptoms of myelofibrosis?

Dr. Hobbs: Myelofibrosis is a disease that can present in many different ways. I certainly see completely asymptomatic patients. Their doctor noticed that they had some abnormalities in their blood counts or maybe the patient themself noted that their abdomen felt a little bit different. Patients are on the spectrum of either not having a lot of symptoms or having lots and lots of symptoms.

I would say the most common symptom of patients with myelofibrosis is fatigue, which is probably one of the reasons why myelofibrosis and the other MPNs sometimes take a while to get diagnosed. Other symptoms that we see a lot of are itching, night sweats, fevers, and unintentional weight loss.

Dr. Rampal: Part of the challenge is whether those symptoms are communicated in visits with physicians. Part of that involves us asking the right questions or, at least, training our colleagues to ask the right questions because not everybody is forthcoming about their symptoms. The alternative is that they get so used to their symptoms that it’s the new normal for them and that is sometimes the tougher part of trying to understand how somebody is doing.

Dr. Hobbs: Occasionally, there may be some patients who feel like there are certain symptoms that they wouldn’t bring up to an oncologist. When I meet a patient for the first time and go down my checklist of MPN symptoms, I’ll ask them about itching and they’d say, “How did you know?” We’re fortunate in the MPN world to have these forms that have been validated to help us ask about symptoms that we know are very common in patients with MPN so that we don’t miss anything.

There’s a whole spectrum of symptoms patients can experience.

Dr. Raajit Rampal

Dr. Rampal: Myelofibrosis is a disease of the bone marrow where you have mutated cells that start to grow and take over the bone marrow. They cause inflammation and we think the inflammation causes scarring in the bone marrow. As that happens, the bone marrow starts to contract and is unable to make blood cells. Blood cells start to go into the liver and the spleen to try to produce blood so those organs get larger and cause symptoms.

The inflammation that causes the scarring and damage in the bone marrow also causes people to have symptoms. Those include getting fatigued, losing weight unexpectedly, and having bone pain and aches. There’s a whole spectrum of symptoms patients can experience, but those are among the most common.

That’s how we think about myelofibrosis and how we think about the disease getting worse. We look at blood counts. If people’s blood counts are getting worse, that’s a sign of disease progression. If their spleens or livers are getting larger or they’re feeling worse, all of those are signs of the disease progressing.

There were two phase 3 studies presented about myelofibrosis, the navitoclax and pelabresib studies.

Dr. Gabriela Hobbs

ASH 2023 Updates on Myelofibrosis Treatments

Ruth: We all know there’s been such an explosion in advances in myelofibrosis in recent years. Dr. Hobbs, what came out of ASH 2023 that you’re most excited about?

Dr. Hobbs: It’s exciting. I can’t remember participating in an ASH conference where there were two phase 3 studies presented about myelofibrosis, the navitoclax and pelabresib studies. That in and of itself was a reflection of how far the field has come. We’re now presenting phase 3 studies on drugs that may get approved.

Dr. Rampal: I totally agree. When have we had two phase 3 studies read out? I can’t remember if that’s ever even been the case simultaneously. Thinking about this in the context of our patient audience, this is a clear sign of progress in the field.

Let’s separate that idea from what happens from a regulatory standpoint. You have to get to this point. This is where the finish line is. It is incredibly encouraging that we’ve got drugs to this point of phase 3 where we may have definitive results that could lead to approvals.

What we can probably say, at least with both drugs, is that they have activity in the disease. There’s no question. What happens from here, of course, is up to the FDA. But I’m encouraged by this. I think these drugs have the potential to make a difference for patients so this is exciting.

The combination (ruxolitinib and navitoclax) led to a very dramatic improvement in spleen volume reduction in patients compared to patients who were treated with ruxolitinib alone.

Dr. Gabriela Hobbs

Dr. Hobbs: Both of these studies were phase 3 studies, as Dr. Rampal mentioned. The navitoclax study was the TRANSFORM study that compared ruxolitinib alone to ruxolitinib and navitoclax. They wanted to see if the combination of the two drugs was more effective at improving spleen volume response as well as improving the symptoms of myelofibrosis patients.

They found that the combination led to a very dramatic improvement in spleen volume reduction in patients compared to patients who were treated with ruxolitinib alone. The symptom endpoint was more difficult, as it seemed like symptom improvement was similar with the combination of navitoclax and ruxolitinib compared to ruxolitinib alone.

My take on that is it’s not entirely surprising that a drug like navitoclax would not improve the symptoms, but it certainly didn’t make patients feel worse. I think that’s important when you think about combination therapy as well. I wouldn’t consider that an entirely negative endpoint.

Why should patients care about how big the spleen is and how much it shrinks? That is one of the few things we know that correlates with survival.

Dr. Raajit Rampal

Dr. Rampal: Let me build off of something that Dr. Hobbs said. Symptoms are important to patients and that has to be part of any of our treatment arsenals. But as you said, we want to get drugs that alter the trajectory of the disease and not simply focus on symptom reduction. That has to be part of the conversation going forward as we think about new drugs in this space.

How much weight do we put on symptom reduction as something that we, as a community or the FDA, should fixate on? As long as the drug is not making people feel worse, if it’s doing other things for patients, then maybe that’s where the win is if you will.

About pelabresib, this is a study of the combination of pelabresib, which is a BET inhibitor, plus ruxolitinib versus ruxolitinib alone. The study looked at whether patients had a greater degree of spleen shrinkage with the combination or ruxolitinib alone.

The answer was unequivocally yes. Patients who got the combination had a much greater spleen response, 65% versus 30%.

Why is that important? Why should patients care about how big the spleen is and how much it shrinks? That is one of the few things we know that correlates with survival. We’ve known from the time of ruxolitinib. Spleen shrinkage correlates with overall survival, which is something we all care about deeply.

There was a trend toward the symptoms getting better with the combination. It wasn’t quite statistically significant, but it was certainly a trend that favored the combination.

Importantly, it didn’t add toxicity. We didn’t see that there were any new major signs of toxicity with the two drugs versus one. In oncology, we worry about that all the time. If you add another drug, you may add toxicity, but that wasn’t the case here. From that standpoint, I’m very encouraged by both data sets.

A big takeaway from having all these drugs is that we shouldn’t wait for people to get that sick. We should treat earlier on.

Dr. Raajit Rampal

Treatment Sequencing

Ruth: Dr. Rampal, as we talk about more options available both today and in the future, one of the things that comes up often, especially for higher-risk MF, is sequencing. What are we learning about optimizing the new drugs and combination drug therapies, including determining when and how to switch therapies?

Dr. Rampal: The answer is we don’t know. The broader context of this is that we have more options so that has two implications.

Historically, there’s been a reluctance to start therapy because you didn’t have anything else. If you were in a world where there was only ruxolitinib and it stopped working, what were you going to do? That’s not true anymore.

A big takeaway from having all these drugs is that we shouldn’t wait for people to get that sick. We should treat earlier on. What is earlier on? There’s some ambiguity there, but I think that is one of the implications of having a lot more drugs.

The reality is we’re going to learn how to use these drugs as we go along. There isn’t a great deal of data. We have data on switching from ruxolitinib to fedratinib. We know what happens and how people do when you do that, but do we have data for the other drugs?

If we start going from momelotinib to ruxolitinib, we don’t have the granular data for that. Those are things we’re going to figure out in practice, probably over the next 1 to 2 years, I’d say.

Now that we have four approved JAK inhibitors, there’s no reason to feel like somebody needs to wait for symptoms from their spleen or their disease.

Dr. Gabriela Hobbs

Dr. Hobbs: The point that Dr. Rampal made is so important, especially when we think about what he said about one of the things that we know in myelofibrosis, which is a smaller spleen equals better outcomes.

An important message for patients is exactly what Dr. Rampal said. Now that we have four approved JAK inhibitors, there’s no reason to feel like somebody needs to wait for symptoms from their spleen or their disease because we do have a lot of options.

Now that we have a lot of options, it became a situation where all of us are calling each other and asking, “How do you switch from this one to the other? Have you had a good experience?”

Sometimes, the clinical trials don’t necessarily translate to what we do in clinical practice. Many clinical trials require that patients be completely off of a JAK inhibitor before they switch to the other, which is something that, in practice, probably neither of us would ever really feel like doing. Over the next year, it’s something that we’re going to have some publications about to help guide the broader community to do that safely.

What these data have shown with the FREEDOM trials is that you can better manage gastrointestinal toxicity and that it does get better over time.

Dr. Raajit Rampal

ASH 2023 Updates on Fedratinib

Ruth: Dr. Rampal, what did we learn about fedratinib at ASH 2023?

Dr. Rampal: The most updated data was the FREEDOM2 study, which looked at fedratinib in patients who have been on ruxolitinib. There were earlier trials that looked at the same question, like the JAKARTA2 trial.

When fedratinib was being studied early on, it was seen that there was a lot of gastrointestinal toxicity, like nausea, vomiting, and diarrhea, which was experienced by the majority of patients.

There have been two subsequent trials with fedratinib, the FREEDOM trials, where they aggressively tried to manage the symptoms from the get-go. They didn’t wait for people to get sick or have nausea or diarrhea. When they prescribe the drug, they say, “When you start the drug, if you start to feel nausea, you’re going to take this medication or if any diarrhea starts, you’re going to take this medication.” You don’t let these symptoms get out of control.

What these data have shown with the FREEDOM trials is that you can better manage gastrointestinal toxicity and that it does get better over time. Is that still a side effect that we have to be concerned about? Yes, but it is something that we can manage in most cases if we’re aggressive about doing that upfront and the expectation is that it will get better over time.

The data (on selinexor) is still in earlier stages so I’m waiting to see if this agent is well-tolerated by patients.

Dr. Gabriela Hobbs

ASH 2023 Updates on Selinexor

Ruth: Dr. Hobbs, what about selinexor?

Dr. Hobbs: Selinexor has been interesting as well. This is a newer agent that we’ve started to see some preliminary results on and they presented their data also in combination with ruxolitinib. This agent seems to have very impressive responses in terms of shrinking the spleen and improving symptoms as well.

The data is still in earlier stages so I’m waiting to see if this agent is well-tolerated by patients. We’ll have to see how the later studies will pan out, but it’s still exciting.

Having this fourth agent will be very helpful in the management of patients with MF, especially patients who have anemia and aren’t able to get a bone marrow transplant.

Dr. Gabriela Hobbs

ASH 2023 Updates on Momelotinib

Ruth: There’s an unmet need for the treatment of anemia for patients with MPN, specifically myelofibrosis, which brings us to momelotinib and a few others.

Dr. Hobbs: We’ve mentioned that there are now four JAK inhibitors that are approved for the treatment of myelofibrosis. We have pacritinib, ruxolitinib, fedratinib, and momelotinib, which was approved at the end of September 2023.

Momelotinib is a JAK inhibitor that was approved a little bit differently than the others. Its main indication is for patients who have myelofibrosis and anemia. Anemia has been an unmet need in the management of myelofibrosis so it’s exciting to have a drug like momelotinib that can help anemia and also a drug like pacritinib that can also help anemia in a subset of patients.

In my practice, I’ve noticed that since the approval of this agent, there have been many patients, especially those who are active online, in their communities, and in patient advocacy organizations, who have been excited or eager to switch to this medication.

I do think that having this fourth agent will be very helpful in the management of patients with MF, especially patients who have anemia and aren’t able to get a bone marrow transplant.

When we have patients with myelofibrosis who have anemia, it’s important to consider if a bone marrow transplant is the right therapy. But for those who can’t receive that therapy, momelotinib takes care of a lot of the parts of the disease that we worry about, like the symptoms, the spleen, and the low red blood cell numbers.

In some cases, they take patients who are relying on transfusions and convert them to not needing a transfusion, which is important in terms of survival.

Dr. Raajit Rampal

Dr. Rampal: There is so much going on in anemia in this disease, it’s remarkable. It’s a problem for which we had no good solutions until very recently.

As you mentioned, momelotinib and pacritinib also seem to have an effect in a proportion of patients where they can increase the hemoglobin. In some cases, they take patients who are relying on transfusions and convert them to not needing a transfusion, which is important in terms of survival.

We know that that correlates with survival, but it’s also quality of life. If you have a patient who’s getting stuck in the transfusion chair for 4 to 6 hours a week or more and that is no longer an issue, that is immensely important to their quality of life. It’s an important problem.

There are some other drugs in development and that includes a drug called luspatercept, which is FDA-approved for myelodysplastic syndrome. There are also some other drugs from a few other companies that are anemia-specific and there was some data presented at ASH on them. There are early signs of efficacy. Too early to say anything definitively, but at least it looks like these are drugs that will be studied further.

What’s been practice-changing is having the approval of the last JAK inhibitor, which is momelotinib.

Dr. Gabriela Hobbs

Practice-Changing Updates

Ruth: We talked about what’s happened in the lab, what’s in the drug approval process, what’s recently been approved, and where our needs still are. What came out of ASH that you think is truly practice-changing immediately or in the near future?

Dr. Hobbs: What was very exciting was seeing the two phase 3 studies. Although those two drugs, pelabresib and navitoclax, are still not approved, they are potentially closer to our doorstep and something that we will have to have conversations about how to use.

Do we use them in combination with the JAK inhibitor that they were studied with? Do we use them with other JAK inhibitors? How do we think about sequencing when we’re talking about combination? Although neither of these agents is approved, these are questions that need to be discussed.

What’s been practice-changing is having the approval of the last JAK inhibitor, which is momelotinib. We now have four drugs that we can prescribe to our patients when we see them in the clinic, especially those who have anemia.

There are so many drugs coming down the pipeline and showing interesting activity, especially some of those showing activity by themselves.

Dr. Gabriela Hobbs

Personalizing Myelofibrosis Treatment

Ruth: The drugs and the studies we’ve talked about are all very exciting, but what other treatments are you excited to share with patients to help you personalize treatment?

Dr. Hobbs: We’ve discussed the MANIFEST and TRANSFORM studies looking at combination studies in phase 3. There are so many drugs that are being evaluated and it’s been very exciting to be at an ASH where we hear about so many different mechanisms of action being explored. Many of those are by themselves and some of them are now getting to the point where they’re used in combination.

To mention a few, there was a compound called a PIM1 kinase inhibitor, another one that inhibits lysyl oxidase, which is a group of enzymes that have to do with making fibrosis or scarring happen in the bone marrow, and an LSD1 inhibitor called bomedemstat.

There are so many drugs coming down the pipeline and showing interesting activity, especially some of those showing activity by themselves. Generally speaking, when we have new drugs that are not JAK inhibitors used by themselves, we rarely see a lot of clinical activity so I thought that that was exciting.

Individualized medicine is the holy grail and there’s a lot of different ways to think about it. There’s how we use the drugs we have now and what some of the newer drugs may be able to do for us.

Dr. Raajit Rampal

Dr. Rampal: There is this whole pipeline of things coming forward, which is amazing for this field. We spent some time talking about the top-line phase 3. But as Dr. Hobbs mentioned, there are all of these drugs that are in early development that are showing us that they may be able to do something. Even beyond what we have, some things are part of the big picture here.

Individualized medicine is the holy grail and there’s a lot of different ways to think about it. There’s how we use the drugs we have now and what some of the newer drugs may be able to do for us.

A key example of this is calreticulin. There’s been a focus on this. There are drugs in investigation that are specific antibodies that target calreticulin. That could be a game-changer if those things work. Pre-clinically, there’s good rationale. Imagine a future where if those drugs are effective, then for calreticulin-mutant patients, this is what we use. We have a drug that targets your mutation. That is where we want to be.

Of course, other mutations occur in the disease and we’ve already started trying to do personalized medicine for patients. Some patients have an IDH mutation that occurs typically in people with more advanced diseases.

We’ve completed a trial where we used a JAK inhibitor plus an IDH inhibitor. IDH inhibitors are FDA-approved for people with leukemia and we’ve combined those drugs and seen very good results. That’s an example of genetically-informed personalized medicine, but there’s also how you use the drugs we have in practice.

Dr. Hobbs: We’ve mentioned a few times that we have four different JAK inhibitors and it’s important to know which patients those are going to help. Are there certain situations where we should use one JAK inhibitor versus another?

At ASH 2023, we saw an update on a similar study that was published recently by the folks who looked at pacritinib. They found that patients who have a symptom improvement of greater than 10% had an improvement in survival, which is similar to what they showed recently with patients on pacritinib having a survival benefit if they also had a spleen volume reduction.

Again, that goes to the theme that we were saying. It’s important to use these drugs and make sure that those drugs are doing what they’re supposed to be doing for the patient. We have endpoints that help patients not only to live better but hopefully to live longer. That can also help the practicing doctor to say this drug is not meeting those endpoints. It’s not helping my patient have an improvement in their spleen or their symptoms. We have other drugs that we should we should think about switching to.

One of the areas where there’s a lot of interest is looking at pre-fibrotic myelofibrosis or early myelofibrosis to see if we can get to the disease earlier before a lot of scarring develops.

Dr. Gabriela Hobbs

ASH 2023 Updates on Interferon

Ruth: There was an interesting study presented at ASH about interferon-α versus hydroxyurea, which is the oldest of the drugs still used for myelofibrosis or MPNs. This study was in untreated MPN patients who were unable to take ruxolitinib. What did we learn?

Dr. Hobbs: Several abstracts were presented with interferon. One was the updated results of the DALIAH study comparing pegylated interferon to hydroxyurea for patients with earlier disease essential thrombocythemia and polycythemia vera. There was also another study looking at earlier myelofibrosis, like pre-fibrotic myelofibrosis.

There’s been a lot of interest in looking at interferons in general across the spectrum of the disease. One of the areas where there’s a lot of interest is looking at pre-fibrotic myelofibrosis or early myelofibrosis to see if we can get to the disease earlier before a lot of scarring develops.

If we look at all the characteristics of the patients who had stable disease for years versus those who progressed, is there a difference that AI can say if you look at these particular parameters, this is a warning sign?

Dr. Raajit Rampal

Artificial Intelligence in Hematology

Ruth: There was a fascinating presentation on the use of artificial intelligence, specifically to differentiate between essential thrombocythemia and pre-fibrotic primary myelofibrosis. Is that something that you see coming into practice or are we way off on that?

Dr. Rampal: We’ll level set by talking about what we mean by AI, which neither of us are experts in. One of the powers of AI is to take broad sets of data and identify patterns. That is a very simplistic way of thinking about the many things that AI can do and is built to do. It can take thousands of variables and find patterns that humans aren’t going to be able to find in real time.

This is an example of what you’re talking about. If you took thousands of bone marrow samples and you said that clinically, these people look like ET, but based on the other parameters that we have, these people look like myelofibrosis. Is AI going to be able to better discriminate versus a human and say this pattern better fits the ET pattern and that pattern better fits the MF pattern?

It will help us refine some of the key characteristics of the disease. The hope is that it may also give us some clues for things like progression if you look at the pattern of a lot of patients. We’re talking about thousands of patients and if we look at all the characteristics of the patients who had stable disease for years versus those who progressed, is there a difference that AI can say if you look at these particular parameters, this is a warning sign? That I think is part of where we think this is going to go.

There are lots of great resources online where, as a patient, you can advocate for yourself to recommend different treatments to your provider to make sure that you’re getting the most updated care.

Dr. Gabriela Hobbs

How Patients Can Be More Proactive in Their Treatment

Ruth: Now that we’ve heard updates out of ASH 2023, what can a patient bring to their community hematology-oncologist as opposed to waiting for it to trickle down? What are some of the ways that a patient can be more proactive with knowing what we now know?

Dr. Hobbs: If you’re a patient or a family member of a patient, you’re already taking those steps that are so important. It’s important to remember that myeloproliferative neoplasms are rare diseases so not everybody has access to subspecialized care.

What’s incredible about the MPN community is that the group of clinicians who treat MPN and are doing research in MPN are extremely committed and passionate about treating these diseases. We’re excited to work with industry partners who are similarly very passionate about finding new therapies for these diseases.

There are lots of great resources online where, as a patient, you can advocate for yourself to recommend different treatments to your provider to make sure that you’re getting the most updated care.

It’s worth asking your physician: when is it time for me to get started on treatment? If you are at the point of needing treatment, it may be worth getting a consultation in a center where there’s a lot of experience.

Dr. Raajit Rampal

Dr. Rampal: If you’re a patient who’s being cared for in the community, it’s worth asking your physician: when is it time for me to get started on treatment? This is an evolving space. We’re more and more convinced that earlier may be more beneficial, but there is a danger in waiting too long.

If you are at the point of needing treatment, it may be worth getting a consultation in a center where there’s a lot of experience. We, who are focused on this, have the forefront of the developments at our fingertips. Doctors in the community setting are busy seeing a lot of different types of cancers. They have to keep up on all of this and they may not have immediate access to that information.

If it is time to get treated, it may be worth a consultation at least to say, “Is this the right thing? Or is there a compelling clinical trial that maybe may make more sense right in the current era?”

We’re bringing back hope. We’ve seen more developments at ASH 2023 than in maybe any prior in the last ten years that I can think of. That’s not unimportant.

Ruth: That’s a very hopeful message. We seem to say that every year but maybe now even more than ever.

Conclusion

Ruth: From a patient perspective, one of the themes that came out of ASH 2023 is all these new approaches to old diseases. It’s not that we’ve discovered new diseases. It’s that these are diseases and patients who have not had solutions for so long or our options have been so limited and now there are more and more options.

Thank you both so much for your time, Dr. Hobbs and Dr. Rampal. Always my pleasure.

Stephanie: Thank you so much, Ruth, for being our incredible patient advocate and moderator. Also to Drs. Hobbs and Rampal for the work and research you do to help move the landscape of myelofibrosis options. 

We hope that you walk away with a better understanding of the latest treatments and clinical trials in myelofibrosis. They may or may not be right for you, but it is our goal to make sure you feel empowered to make a decision for yourself.

Thank you and we hope to see you again at a future program at The Patient Story.


GSK
Karyopharm Therapeutics logo

Special thanks again to GSK and Karyopharm for their support of our independent patient education content. The Patient Story retains full editorial control.


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Categories
Chemotherapy Hysterectomy Leiomyosarcoma Lung resection oophorectomy Patient Stories Radiation Therapy Sarcoma Soft Tissue Sarcoma Surgery Treatments

Brandie’s Stage 4 Leiomyosarcoma Story

Brandie’s Stage 4 Leiomyosarcoma Story

Interviewed by: Alexis Moberger
Edited by: Katrina Villareal

Brandie B. feature profile

Brandie shares her journey with stage 4 leiomyosarcoma. She had a history of painful menstrual periods and a family history of fibroids and endometriosis, but in the summer of 2021, Brandie experienced worsening symptoms, including severe urinary urgency. Assuming it was related to fibroids, she underwent ovary removal surgery and an elective hysterectomy.

Unexpectedly, the pathology report revealed leiomyosarcoma, a rare cancer of the smooth muscle. Further surgeries were performed to remove metastatic implants. She also underwent chemotherapy regimens, which proved ineffective.

Seeking a second opinion at MD Anderson, she was recommended radiation. Despite its damaging effects on her bladder and colon, Brandie remained hopeful. However, the tumor continued to grow, leading to a failed surgery attempt. Desperate for options, she sought opinions from other specialists and found a sarcoma surgeon at City of Hope.

In April 2023, Brandie underwent a 14-hour surgery. The tumor was successfully removed, but her medical oncologist warned about the risk of microscopic cells in her bloodstream. A follow-up scan in September revealed a lung nodule, leading to a pulmonary wedge resection in October.

Throughout her leiomyosarcoma treatment, Brandie faced significant side effects, including neuropathy, muscle loss, and urinary incontinence. She maintained a positive outlook and her most recent scans in January 2024 showed no evidence of disease.

Despite the challenges, Brandie emphasizes the importance of seeing a specialist, getting multiple opinions, and continuing support for cancer survivors. She also shares her experience with having an ostomy, expressing gratitude for the improved quality of life it brought. Brandie encourages others to openly discuss their cancer journey and seek help when needed.

In addition to Brandie’s narrative, The Patient Story offers a diverse collection of sarcoma stories. These empowering stories provide real-life experiences, valuable insights, and perspectives on symptoms, diagnosis, and treatment options for cancer.


  • Name: Brandie B.
  • Diagnosis:

    • Leiomyosarcoma

  • Staging:

    • 4

  • Initial Symptoms:

    • Abdominal & pelvic pain
    • Cramping
    • Increased frequency of urination
    • Abnormally heavy menstrual periods

  • Treatment:

    • Chemotherapy: gemcitabine, docetaxel, doxorubicin, ifosfamide
    • Radiation
    • Surgeries: oophorectomy, elective hysterectomy, pulmonary wedge resection

Brandie B.

Brandie B. timeline

Brandie B. timeline


This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.



I have a bit of a medical background so I’m running the different possible scenarios through my head. It never crossed my mind that it could be cancer.

Introduction

I live in Northern California. I’m a registered nurse and work as an educator for a medical device company.

I love to travel. Before my diagnosis, I was into fitness. I did CrossFit and was a Peloton enthusiast.

I have a 6-year-old big, fat orange tabby cat named Toby and a wonderful boyfriend named Brad, who is a high school math teacher.

Pre-diagnosis

Initial Symptoms

I’ve always had painful menstrual periods since I was a teenager and a family history of fibroids and endometriosis. I always suspected that there was something unusual going on.

Doctors weren’t concerned over the years. There wasn’t ever any evidence of anything wrong. They told me, “You probably do have endometriosis, but we have to do surgery to confirm that so we’re just going to assume you do. If it gets to the point where you need to have surgery, then we can confirm it that way.”

Brandie B.

Brandie B.

Symptoms Worsen

Fast forward to the summer of 2021, I started having heavier, more painful menstrual periods, which was unusual. I also had a sensation of fullness or bloating in my pelvis. What spurred me to see a doctor emergently was having severe urinary urgency.

I have a bit of a medical background so I’m running the different possible scenarios through my head. It never crossed my mind that it could be cancer. I assumed I had a fibroid. I’d been told years ago that I had a teeny tiny one so I assumed that it was related to that.

Oophorectomy (Ovary Removal Surgery)

I ended up getting rushed into surgery. At this point, cancer’s still not on my radar. I had a large cyst on my ovary, which was funny that it didn’t raise alarm bells for me. It didn’t even occur to me that it could be malignant. They ended up having to remove my ovary because the cyst was solid.

Everything came back benign. But the doctor said, “What do you want to do about this large fibroid in your uterus?” I had turned 38 at the time and wasn’t interested in having children so I told the doctor, “Let’s do a hysterectomy. I know fibroids can come back. I want to do a one-and-done.”

The surgeon gets on the call and tells me, ‘I’m sorry, but your pathology report came back and it was not a fibroid. It was a sarcoma.’

Elective Hysterectomy

I had an elective hysterectomy and a couple of weeks later, I got a phone call from the clinic and they said, “Do you have time this afternoon for a video visit with your surgeon?” I knew something was up.

Diagnosis

Getting the Diagnosis of Stage 4 Leiomyosarcoma

The surgeon gets on the call and tells me, “I’m sorry, but your pathology report came back and it was not a fibroid. It was a sarcoma.” He kept saying, “Wow,” and added, “I haven’t seen this in decades.” He told me that he would be referring me to an oncologist and that’s where it all began.

We were hopeful that this sarcoma was confined to my uterus and since my uterus was gone, maybe this was it. Maybe this was my whole cancer story.

Brandie B.

Brandie B.

Secondary Oophorectomy

A couple of months later, the oncologist decided that she wanted to remove my remaining ovary because the tumor had estrogen receptors. When she went in, she found metastatic implants throughout my pelvis, which were confirmed to be sarcoma.

There were about six tiny nodules throughout my pelvis. They were attached to my peritoneum, bowel, and diaphragm, and they removed them all.

There was one small piece on my colon that they left behind. The surgeon, who was a gynecologic oncologist, told me that she was concerned about damaging my colon so she didn’t want to mess with it.

When I woke up from surgery, the fellow talked to me and said, “I’m so sorry.” I was still hazy coming out of anesthesia. She put her hand on my arm and said, “I’m so sorry, nobody deserves this.” I said, “What are you talking about?” I still was not fully with what was going on and she said, “We found more cancer in your pelvis so we’re going to have you start chemo in three weeks.”

At that point, I thought, “All right, we got this. I’m going to do chemo and it’s going to be what it is.” It turns out, I have leiomyosarcoma, a cancer of the smooth muscle, and it’s pretty much resistant to treatment.

I did 12 infusions, but the tumor doubled in size.

Treatment for Stage 4 Leiomyosarcoma

Chemotherapy (Gemcitabine & Docetaxel)

I did about six rounds of gemcitabine and docetaxel for four months, which I had an allergic reaction to. I did 12 infusions, but the tumor doubled in size so it did nothing.

Chemotherapy (Doxorubicin & Ifosfamide)

They decided to start me on a more aggressive chemotherapy that required me to be hospitalized for five days every three weeks. I started doxorubicin, or what they call the Red Devil, and ifosfamide, which can cause damage to your bladder, which is part of the reason why I had to be hospitalized and monitored closely while undergoing chemotherapy.

I did three rounds of that in about nine weeks and stayed 15 days or so in the hospital for those chemo infusions. They sent me for a scan and it doubled in size again so the tumor was not having it.

Brandie B.

Brandie B.

Tumor Not Responding to Chemo

They started weighing the different options. “It’s starting to invade your bladder and your sigmoid colon. We need to see if we can go in and remove this. If this looks like a surgery that’s not going to cause a ton of damage to your insides, we want to get it done and get you back on another chemo.”

The MRI showed that there’s too much invasion into my internal organs that if they do a surgery, it’s not going to be straightforward. It’s going to be a long recovery. It’s going to delay getting on to another systemic therapy so they decided that they didn’t want to operate.

I was pretty freaked out. Two chemo regimens had already failed me and they wanted to put me on a third. I’m thinking, What are the chances of that doing anything at this point?

Sometimes I wonder if things would have played out differently if I had been with a sarcoma specialist from the beginning.

Getting a Second Opinion

I got on a plane and went to MD Anderson to see a team of specialists who only treated sarcoma. I guess that was my first mistake as the doctor I had been seeing was not a sarcoma specialist. Sometimes I wonder if things would have played out differently if I had been with a sarcoma specialist from the beginning.

The team at MD Anderson said, “We’re going to get some more scans. We’re going to bring this to the tumor board then we’re going to call you and let you know what we think we should do next.”

A few days later, they called me and said they thought radiation was the best way to go. I temporarily relocated to Houston for about six weeks. Luckily, I have an amazing friend who let me stay with her and her husband. It was nice and comfortable. I had my own room. It was a good experience despite the reason why I was there.

Brandie B.

Brandie B.

Radiation

I went through 25 fractions of radiation. I went every single day. It was the first time that anybody had given me any hope. She told me, “I’ve seen your type of tumor respond to radiation before.” She explained how they dosed it in a way that it was going to cover a margin around the tumor that would reduce the risk of it recurring by 50%. I was on cloud nine, thinking I finally figured out something that was going to work.

But even as a nurse, I didn’t realize how devastating radiation can be to your body. I tolerated it pretty well while I was going through it, but it damaged my bladder severely and my colon. I start having bowel issues and urinary incontinence. I thought, This is a means to an end.

I finished radiation the day before Thanksgiving 2022. I packed all my things, went back home, and spent the holidays with my family. That was the order from my doctors. “Go home, spend the holidays with your family, rest, recover from radiation, and we’re going to see you back at the beginning of January for your surgery. We’re going to remove this tumor.”

I thought, If these surgeons at this top hospital are not comfortable operating on me, then I’m a goner. This is it.

Tumor Grew

They scheduled me for surgery. I went out a few days early and my mom flew out with me. They did scans and a bunch of tests. I showed up on the morning of my pre-op, the day before the surgery was supposed to take place, and the surgeon told me, “I’m sorry. It looks like your tumor has grown and I can’t operate on you.”

That was probably the lowest point for me right there. I felt pretty hopeless. I went through all of this to get this thing out of me. It was 12 cm. It was huge and uncomfortable. It was crushing my bladder. I was having bowel issues. I was getting obstructed and I was miserable. I thought, If these surgeons at this top hospital are not comfortable operating on me, then I’m a goner. This is it.

Brandie B.

Brandie B.

Follow-up Appointment with Oncologist

They decided that they were going to have me follow up with my medical oncologist before I flew back home to California. I moped around for a couple of days then I got in to see him.

He said, “You know what? It might still be inflamed from the radiation. It’s negligibly larger. I’m going to run this by the tumor board, but we’re going to send you home for six more weeks. We’re going to scan you again and then make a decision. If it is larger, we’re going to consider systemic therapy again. But if it’s not, then we’ll talk about what we can do.”

I had this sense of relief. I’m going to go back to living my life for six more weeks.

The team at City of Hope brought my case to the tumor board and found out that there was a surgeon there who did nothing but operate on soft tissue sarcoma.

Getting Additional Opinions

During those six weeks, I got more opinions. I saw a doctor at Memorial Sloan-Kettering and a doctor at City of Hope. The team at City of Hope brought my case to the tumor board and found out that there was a surgeon there who did nothing but operate on soft tissue sarcoma.

I felt like it was all serendipitous. When I was first diagnosed, I looked for other sarcoma patients and their stories on social media to help guide me through what I was going through. I came across a surgeon whose Instagram name was @sarcomasurgeon. He turned out to be the surgeon who said that he would be able to help me. I thought, Everything’s aligning. This is meant to be. This guy’s going to save my life.

Brandie B.

Brandie B.

Surgery to Remove the Tumor

I went for my pre-op and saw the surgeon. I said, “Things are not moving.” He admitted me to the hospital right then and there, and I had surgery the next day.

The surgery was supposed to be on April 20th and it ended up happening earlier on April 12, 2023. I was brought in emergently. I had an almost 14-hour surgery.

There were five different surgeons involved. Dr. Tseng, a sarcoma oncologist at City of Hope, led the team, which included 1 or 2 urologists and a gynecologic surgeon. They had to do a diverting colostomy so there was a colorectal surgeon involved.

They ended up having to call on vascular surgery because the tumor was fused to the neurovascular bundle in the left side of my pelvis so the major artery in my pelvis was severed. They had to graft it and repair it because the tumor was fused to it. The tumor was stuck to my sigmoid colon. It had not grown into my colon, but it was smashing it so severely that nothing could pass through.

They had to remove a piece of my sigmoid colon and half of my bladder. The tumor was attached to my left distal ureter, which is the tube that goes from your kidney to your bladder, so they had to remove part of that.

I didn’t care what morbidities or complications I was left with. I wanted the tumor out and I didn’t care what they had to do.

My ureter wasn’t long enough to reach my bladder anymore so they had to reroute my ureters so that they funneled into one. My insides have been MacGyver-ed. They grafted the arterial damage to the artery in my pelvis.

When I went in for the surgery, there was some discrepancy because the radiologist said they were concerned that the cancer had implanted in my peritoneum so they were calling it sarcomatosis, which would pretty much be there’s nothing we can do at this point.

He told me that he did not see that. He did not agree with that radiologist and that we were going to proceed with the surgery, but I needed to be aware that if he opened me up and saw that, then he would have to abort the surgery. That was a big thing going in because I didn’t know if it was going to be successful. I didn’t know if they would be able to get the tumor out at all.

After a few hours, my mom was under the impression that they must be proceeding with the surgery because I’d been in there that long. That was a little bit nerve-wracking. I didn’t care what morbidities or complications I was left with. I wanted the tumor out and I didn’t care what they had to do.

Brandie B.

Brandie B.

Recovering from Surgery

I spent two days in the ICU and about 10 days total in the hospital. They wouldn’t let me go home to Northern California for another month because they wanted me to be close by. I stayed with a friend in the LA area who was a nurse and took great care of me. I have been fortunate to have so many good friends through all of this who have been willing to step up and help out.

I had a nephrostomy tube in my back to drain my kidney, a drain in my abdomen, and a catheter in my bladder. I had all these tubes coming out of me and they sent me home that way for about a month before they finally let me go home to Northern California.

I come back for my first scans and there is a nodule in my lung.

He said, ‘We’re not going to mess around. We’re not going to wait and see what this turns into. I’m sending you to a thoracic surgeon and having that piece of your lung removed.’

Status Post-Surgery

After the surgery, the surgeon came to talk to me and said, “We got the whole tumor out with clear margins, but with sarcoma, that doesn’t mean a whole lot. There could be microscopic cells floating throughout your bloodstream that are waiting to re-implant somewhere else. I’m not telling you that to scare you, but that’s the reality and I want you to be aware.”

I followed up a few weeks later with my medical oncologist and he said, “I consider you to be cured.” I was elated at this point. This was June 2023 and I’m being told that I’m cured of stage 4 sarcoma. This made me laugh. I told him, “Okay. I know we’re going to continue with the scans every four months. I’m going to be cautiously optimistic because I understand the risks of this returning,” and he said, “No, no, no, you should be grotesquely optimistic.” There was a big celebration at this point.

Brandie B.

Brandie B.

Post-Surgery Scan

Fast forward to September, I come back for my first scans and there is a nodule in my lung. My doctor is still very optimistic. He said, “Look, it looks like that nodule has been there for a long time. I went back and looked at your old scans. It decided to grow a little bit and it was still less than a centimeter. It was tiny.”

He said, “We’re not going to mess around. We’re not going to wait and see what this turns into. I’m sending you to a thoracic surgeon and having that piece of your lung removed.”

Pulmonary Wedge Resection

In October, I had a pulmonary wedge resection. They removed the top part of my left lung with the tumor. It was confirmed to be metastatic sarcoma, but they got it all out. Turns out that’s the best-case scenario for me. If something pops up and it is operable, then that’s the plan because we know that I don’t respond to chemo.

When you get diagnosed with cancer, your whole life changes.

Side Effects of Treatment

All of the treatments that I’ve been through have left me with some pretty significant impairments. I have pretty severe neuropathy in both feet and damage to a nerve in my left thigh. I have a lot of muscle loss. I have been able to regain a lot of strength months after surgery, but for a while, I was falling a lot. I even fell and broke my wrist at one point.

I had a lot of instability, like the feeling of not being able to feel your feet. Your feet feel like they’re asleep, like pins and needles 24/7 so that’s pretty uncomfortable. But like I said, I’m alive.

Follow-up Scans

My most recent scans were on January 4, 2024, and they were perfectly clear for the first time since I started this whole journey.

Brandie B.

Brandie B.

Sharing My Cancer Story

Part of the reason why I like to be so open about what I’ve been going through is sarcoma is a rare cancer and a lot of people don’t know what it is. When they hear the word sarcoma, they don’t necessarily know that it’s cancer or what it affects. It makes up less than 1% of all diagnosed cancers and there are over 80 subtypes. There’s not a lot of research. There aren’t a lot of treatment options.

When you get diagnosed with cancer, your whole life changes. It’s not as simple as, “I’m going to do chemo or have this surgery and then I’m going to go on my merry way and put this behind me.” For most people, that’s not the case.

The very first time my care team said that a colostomy was a possibility, I did everything I could to mentally prepare myself.

Having a Colostomy Bag

The colostomy has not been an issue at all. They told me that it would potentially be reversible. I don’t even care. It’s honestly improved my quality of life. I don’t mind it at all. It’s not hard to manage.

Most people wouldn’t know it was there if I didn’t tell them and the people who do know are people who know what to look for because they’re medical professionals that I encounter in my day-to-day life. Nobody needs to know it’s there if I don’t tell them.

I’ve had a pretty significant injury to my bladder so after all of the radiation and the surgery, I was left with a fistula. A hole that developed in my bladder has left me with pretty severe urinary incontinence, which is difficult for a woman in her late 30s who likes to travel and do things.

I’ve been confined to managing that. I spent about four months with a catheter in my bladder in 2023. We’ve tried a lot of things to get it to heal. I saw a specialist who attempted to repair it but my bladder and vaginal tissue were so severely damaged from all the radiation and the surgery that the repair did not work.

Brandie B.

Brandie B.

I’m getting ready to have an ileal conduit surgery, which is a urostomy so I’m going to have two ostomies. We decided that this was the quickest way to get my quality of life back so I could get back to traveling, going on girls’ trips, getting in a swimsuit, and not having to worry about urinary incontinence or having a catheter.

The very first time my care team said that a colostomy was a possibility, I did everything I could to mentally prepare myself. I went on Instagram and started following people who have colostomies, watching their day-to-day lives, how they dress, how they manage it, and how they maintain it. It helped me wrap my head around these women living these lives. They’re in swimsuits, wearing cute clothes, doing this and that, and nobody has to know that they have a colostomy. I can do this.

When I went in for the surgery, they still didn’t know if I would need it or not. It was going to be a surprise when I woke up. But when they told me, I wasn’t upset, not even a little bit. I said, “You guys did what you had to do to save my life and this is my new normal.”

For the most part, it doesn’t affect me. It’s not a problem. It’s only improved my quality of life.

When I came out of surgery, there were so many things going on that I didn’t pay any attention to it. The ostomy nurse saw me several times before I was discharged from the hospital and made sure I was comfortable changing it. She taught me how to do it and then she had me do it with her there so that she could watch, critique, and offer suggestions. We talked about the different products that were available and what I should try. She set me up with my first order of supplies and then I went from there.

I do think that I have a little bit of an unfair advantage being a nurse. Things that might be a little weird or gross to a regular person don’t necessarily gross me out, but it hasn’t been trouble. I haven’t had any horror stories, like a leakage accident, happen.

There have been times when the bag starts to detach from my abdomen, but I usually can tell that something’s going awry and I can intervene pretty quickly. For the most part, it doesn’t affect me. It’s not a problem. It’s only improved my quality of life.

Brandie B.

Brandie B.

Words of Advice

If you were to ever be diagnosed with sarcoma, the very first thing you need to do is search for a sarcoma center at a hospital with a cancer center. Sarcoma does not behave the same way as solid tumor cancers. It’s its own beast and requires somebody who knows exactly how it behaves and how to treat it.

I do wonder what if. What if I had been seeing a sarcoma specialist from the get-go? Not only should you see a sarcoma specialist right off the bat, but you should also get multiple opinions. I know that can seem daunting when you’re faced with a new diagnosis. You feel overwhelmed and don’t know what to do first.

I very much remember being in that situation where somebody like me, who is a nurse, who wants to understand everything about what’s going on, shut down. I wanted to curl up in a fetal position and let somebody else deal with it. It was too much for me to handle.

Once somebody is treated for cancer and receives clear scans or told that they have no evidence of disease, they still need support. It doesn’t end right there.

Fortunately, I have a really good friend who helped her mom navigate through a colon cancer diagnosis and she knew how to be that advocate. She stepped in and made phone calls for me. She handled what I was not capable of handling at the moment. I’m really grateful to her for that.

She set up multiple opinions for me because it’s overwhelming. You just want to go with what the first doctor says, get started with treatment, and get going, but it’s important to get multiple opinions from places that specialize in sarcoma.

Once somebody is treated for cancer and receives clear scans or told that they have no evidence of disease, they still need support. It doesn’t end right there. I’m going to continue to be scanned every four months, probably for the rest of my life, and I have to deal with that paralyzing fear every time.

I have all of these disabilities and complications to deal with now. This is the price that I had to pay to have more time on this earth and I would do it again if I had to.

Continue to support your friends who have been through cancer because it doesn’t go away once they get that all clear.

Brandie B.

Brandie B.

Honestly, if you’re comfortable, ask your doctor for medications that can help. It’s okay to not be able to deal with it all on your own. I take medication for anxiety when I go in for scans and usually, I have to start taking it a few days before.

This might be different for other people, but I can show up to surgery alone; it doesn’t scare me. I can go sit in a chemo chair alone; that’s fine. But when I’m going to have the doctor deliver my scan results, I need to have somebody close to me with me. I do my best to remind myself that whatever the result is, we will take the next steps and deal with it.

Brandie B.


Brandie B. feature profile
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Categories
Acute Myeloid Leukemia (AML) Bone marrow transplant Chemotherapy Leukemia Patient Stories self-advocacy Steroids Treatments

Emily’s Cytogenetically Normal Acute Myeloid Leukemia (CN-AML) Story

Emily’s Cytogenetically Normal Acute Myeloid Leukemia (CN-AML) Story with NPM1 & FLT3 Wild-Type Mutations

Interviewed by: Alexis Moberger
Edited by: Katrina Villareal

Emily T. feature profile

Emily shares her journey of being diagnosed with cytogenetically normal acute myeloid leukemia (CN-AML) with NPM1 & FLT3 wild-type mutations at the age of 32.

She shares the challenges she faced during the diagnostic process while she was in a foreign country. She delves into the experiences of undergoing intensive chemotherapy, facing side effects, and eventually receiving a bone marrow transplant.

She discusses the difficulties in finding a suitable bone marrow donor, the emotional and physical toll of the transplant process, and the ongoing challenges post-transplant, including graft-versus-host disease (GvHD) and early-onset menopause.

Emily emphasizes the importance of self-advocacy, seeking multiple medical opinions, and finding ways to cope with the physical and emotional aspects of cancer treatment. She highlights the need for a holistic approach to healing, involving supportive relationships, lifestyle adjustments, and a proactive mindset. She also reflects on empowerment and resilience, emphasizing the individual’s role in navigating the complexities of cancer survivorship.

In addition to Emily’s narrative, The Patient Story offers a diverse collection of AML stories. These empowering stories provide real-life experiences, valuable insights, and perspectives on symptoms, diagnosis, and treatment options for cancer.


  • Name: Emily T.
  • Diagnosis:

    • Cytogenetically Normal Acute Myeloid Leukemia (CN-AML)

  • Mutations:

    • NPM1
    • FLT3 wild-type

  • Initial Symptoms:

    • Nosebleeds
    • Fever
    • Chills
    • Small red spots all over the body

  • Treatment:

    • Chemotherapy
    • Bone marrow transplant

Emily T. timeline


This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.



Introduction

I was 32 when cancer happened. For most of my life, I’ve always been known as a fitness freak. I can’t even think of one hobby that doesn’t involve any sort of movement.

I’ve been in the health and fitness industry for almost 19 years, primarily coaching people in personal training and fitness, and, more interestingly, in pole dancing and aerial arts.

I was born in Kuala Lumpur, Malaysia, and moved to Tennessee at a young age. Since then, I have moved back to Asia and lived in Hong Kong, Dubai, and India. All of these places have taught me that it’s so easy to move to the next spot to see what’s next and say yes to everything because that’s life. You don’t say no to everything. You want to experience as much as you can.

There’s always a bit of a “too much” situation with most things and that eventually leads to burnout. At one point, I was living out of my suitcase for about two years for work and personal pursuits, wanting to say yes to every single project that came.

Now I live in a very quiet little town of Alicante, a bustling city in Spain.

Emily T.

I haven’t been able to eat proper food in three to four days. I only had soup and even then, I couldn’t keep it down.

Emily T.

Pre-diagnosis

Initial Symptoms

About three months before I planned to move to Spain for the first time, I started experiencing nosebleeds. I’ve always had nosebleeds throughout childhood but only when the temperature changes. I thought and was told that was normal. But this time, I had nosebleeds at the most random times, like in the middle of a squat or the minute I woke up.

Those were disturbing, but I chalked it up to traveling so much for work and not sleeping well. Typically in the past, when I didn’t sleep well, I tended to have jaw pain that would travel up the neck, which also included ringing in the ears. It becomes very hard to focus.

A few weeks before the diagnosis, I traveled for work from Australia to Hong Kong to pick up my stuff, to Dubai to pick up the rest of my stuff, and then eventually to Madrid, and then to Alicante. By the time I arrived in Alicante, I’d been on my third day of fever, which I thought was the travel and jetlag.

When I went to work the next day, I was told, “Hey, nice to see you! Are you okay?” People worried. “You don’t look as vibrant as you usually do. Are you okay?” My boss specifically said, “You don’t look okay. Are you sure you’re okay?” I brushed it off and said, “Nah, I’m good. Don’t worry. If I need to go to the hospital, I’ll let you know.”

Emily T.

The night before I went to the hospital, I noticed red dots all over my body, especially around my legs.

Emily T.

That night itself, I had an inclination that maybe something wasn’t okay. I haven’t been able to eat proper food in three to four days. I only had soup and even then, I couldn’t keep it down.

I was constantly shivering. I was shivering the whole way on the plane and the train ride. I was popping Advil almost every two hours. I noticed that every single time that I took Advil, it was becoming less and less effective. At the time, I didn’t know that I wasn’t supposed to be taking ibuprofen since it affects your blood count.

The night before I went to the hospital, I noticed red dots all over my body, especially around my legs. They weren’t itchy, but it looked like someone used a red pen and drew dots all over my body.

I went to a local clinic the next day and told the doctor my symptoms, but she didn’t say much. She gave me paracetamol in an IV and told me to go to the main hospital in the middle of the city. I didn’t think much of it because I thought that was protocol for a foreigner in Spain.

When I got to the main hospital, they immediately brought me a wheelchair and said I had to go to the emergency room. When I got there, no one told me anything. They kept jabbing me for test after test after test.

Emily T.

The team at the hospital in Alicante believed that I had leukemia.

Emily T.

Diagnosis

Getting the Official Diagnosis

I was in the ER with not much news. One doctor tried to explain in Spanish that they don’t typically do this because they were waiting for one of the blood results from a leukemia specialist hospital in Valencia. They’re waiting for that final confirmation. The team at the hospital in Alicante believed that I had leukemia.

The official diagnosis was cytogenetically normal AML (CN-AML) with NPM1 and FLT3 wild-type mutations. This essentially puts me at intermediate risk. It’s not low-risk where you can get away with less-intensive chemo, but it’s not high-risk where a bone marrow transplant might be mandated almost immediately.

With intermediate risk, it gave me a little more time to understand what a bone marrow transplant was and how to go about it because I didn’t know anything about bone marrow transplants.

It also gave me time to do consolidation rounds with ample rest time in between. In total, I had five rounds of chemotherapy before the bone marrow transplant and each of them was intensive and each of them was done inpatient.

They didn’t give me a stage. I asked the doctors in Spain and Hong Kong. When I was in Hong Kong, I repeatedly asked the doctor, “Can you tell me more about what all this means and tell me the stage?” He’s a leukemia specialist as well as specializing in AML.

He said, “Right now, we don’t have the test for your specific biomarkers to give you a specific stage,” and that was in 2018. I don’t know if there is new testing available now that could give someone with intermediate risk where exactly they are in stages. But for me, that information was not available at the time.

Emily T.

Deep down, I knew something was very wrong. Even with the language barrier, the way the doctor presented the diagnosis felt sincere and sympathetic.

Emily T.

Reaction to the Diagnosis

I don’t know how that might have sounded if I hadn’t gotten first-hand information from the doctor himself. My friend had to translate and he didn’t realize what leukemia was at the time he was translating. Hearing the news brought to you in that sense was underwhelming but quite profound.

My brain went into logistical mode. I immediately whipped out my phone to Google, “What’s leukemia and how do you recover from it?” When I found out it was blood cancer, my survival instinct said to shut down Google. Then the next day, I texted people to tell them that I wouldn’t be showing up for whatever commitment I had committed to and that was it.

Processing the Diagnosis

Deep down, I knew something was very wrong. Even with the language barrier, the way the doctor presented the diagnosis felt sincere and sympathetic. I was in the ER the whole day. They didn’t do one test and told me they thought it was leukemia.

Emily T.

My dad asked, ‘Can we have some time to look for another treatment? Do we need to jump into chemotherapy so quickly?’ The doctor said, ‘She doesn’t have time.’

Emily T.

Bone Marrow Aspiration

The next big test was bone marrow aspiration. For leukemia and specifically for acute myeloid leukemia, they needed to do a bone marrow aspiration to see how much of it was in my bone marrow. That test tells you how serious the situation is as well.

There are two ways to get your bone marrow out: from the hip and the chest. They chose the chest area where you could see everything. I remember lying down, thinking, Just don’t look. I kept my eyes open for as long as I could and kept it shut the rest of the time. That was probably one of the scariest procedures I had to undergo.

At the time, I didn’t know there was another option. I didn’t know that you could ask for the hip version if you’re not comfortable with the procedure being so close to your vital organs. I don’t even understand why that happens, but I guess it makes sense to always have an alternative just in case the other area is not accessible.

I wish I could have asked for the hip version where I didn’t feel like there was such a compression. Even today, I find myself breathing tightly and that might have been an aftermath and the reflex when you have such a forceful extraction from the chest area.

They gave a local numbing agent, which helped, especially when the first needle went in. It helps you feel less of it. But I do remember feeling a lot of pressure, especially when they started pumping out the marrow. If you dare open your eyes, you will see someone looming over you with a very aggressive type of movement. You’re not going to feel the aggression, but if they have trouble extracting the marrow, there will be some force.

Treatment

Discussing the Treatment Plan

The very next morning, they came in and said, “It’s confirmed. This is what’s going on. Given your condition right now, we have to start chemotherapy right away.” At that time, I was still on painkillers so I don’t remember exactly what I said.

Before I could verbalize anything, my dad jumped in and asked, “Can we have some time to look for another treatment? Do we need to jump into chemotherapy so quickly?” He has a bit of experience with this because his mom went through breast cancer in her 70s. For two years, he saw how it wore her down.

But you have to appreciate how pragmatic Spanish doctors are. I remember this verbatim as well. The doctor said, “She doesn’t have time. She will die,” and that was it. Discussion over.

Emily T.

All things considered, it was good that I had chemotherapy and even better that my body responded to chemotherapy.

Emily T.

Chemotherapy

I asked him about my prognosis. “What’s the next step after this first round of induction chemotherapy?” Induction chemotherapy is “7 + 3,” which is the one I was given. You’re on two different types of chemo. One is on a drip for seven days 24/7 and the other drug is on a drip for three days 24/7 and that’s your induction round. What they hope to do with this round is to induce you into remission, but it’s not considered complete remission from the disease. It has to be above a certain marker to qualify for the next round of chemotherapy.

They gave me three rounds because of the conditions that they said, “Considering your age and that you’re in a healthy weight range, we believe that you have a high chance of recovering from these intensive chemotherapies.” Hence why I was inpatient because they increased the dose on everything so I think the prognosis was positive.

It would have been a different story if my dad had argued and said, “Nope, I don’t believe in chemotherapy. Let’s go with another form of treatment.” I also developed pneumonia while I was in the hospital for the first round.

All things considered, it was good that I had chemotherapy and even better that my body responded to chemotherapy.

The induction chemotherapy included cytarabine. It was one of the drugs that was consistent in the induction round, the consolidation round, and the last round in preparation for transplant.

Cyclophosphamide was the one that was introduced right before the transplant. That was one of the more toxic ones but also one of the stronger ones.

There was also daunorubicin hydrochloride.

Side Effects of Chemotherapy

My side effects varied. During the first round of treatment, the induction chemo, I thought that was going to be as bad as it goes. There was nausea, but what was more prominent was gut pain. I couldn’t eat. I was put on an IV drip for seven days because I couldn’t eat literally and they had to give me nutrients.

Emily T.

I had skin reactions and somehow, I developed an allergic reaction to platelet transfusion

Emily T.

My bowel movement was very uncontrolled for about 20 days. It wasn’t until two days before leaving the hospital that I felt the side effects were finally under control.

I was in the hospital for three weeks for that first round of chemotherapy. I lost my hair. I had a lot of fever as well. Every time the fever happened, it was also accompanied by bad coughing, which explained the pneumonia.

I was given morphine for the gut pain because it was so painful that I couldn’t even function. Even when I had people visiting me, it was hard to talk. I was also given fever medication, antifungal medication, and antiviral medication. They did one scan to see how things were going in terms of the gut because it was so painful.

Throughout the consolidation rounds, the side effects weren’t as bad. My platelets dropped. I had fevers, but they weren’t as intense.

The worst side effects I had were skin-related. I had skin reactions and somehow, I developed an allergic reaction to platelet transfusion, which is ironic because that’s something I needed throughout my treatment. To counter that, they had to give me an antihistamine right before a platelet transfusion to mitigate that reaction.

Managing the Side Effects

The chemo before the bone marrow transplant was the most intense. That was when I started to second-guess myself. But during the first round of chemotherapy, what helped me was a sense of acceptance: to sit there and trust that my family and my friends have my best interests at heart, in how they communicate with the doctors, with the medical team, and also asking questions on my behalf.

In the first round, that’s when you’re very dazed, especially when you just heard your diagnosis two days ago before you started chemotherapy. In that situation, open yourself up to someone that you can trust. It was the moment when I felt like I could surrender to whatever higher power there was as well as conventional medicine. That was when I felt my parasympathetic nervous system start to settle a little.

If I’m in fight or flight mode, I don’t think my body biologically would have the ability to handle the side effects. My sense of touch was very strong. My mom was there. She gave me hand and foot massages. She gave hugs. All of those are the type of medicine that people don’t value. I realized how much power we can open ourselves to if we take a step back.

Emily T.

The chemotherapy before my bone marrow transplant was the hardest. The pain was the most intense. The fevers were relentless.

Emily T.

The steps that I took throughout the consolidation round were very helpful. I used the hospital grounds as my exercise place. I was taking walks around the nurses’ station. With every step that you take moving forward, you can feel yourself taking ownership and taking an active role in your recovery. Even if it’s five minutes of walking, even if it’s two minutes of walking, it’s something. It’s a physical representation of you taking action for what you can’t control, but you can still try and it still counts.

I leaped into my hobby of martial arts by watching martial arts movies, martial arts tutorials, and TV shows. I don’t have a martial arts background, but I enjoyed Thai boxing and jiu-jitsu as an adult. I can see how it’s not about the physical strength, but the mental agility that you have to exercise when you have to make decisions in the ring or on the mat.

Those don’t apply to everybody, but there are still some things that we can take from them. We can practice resilience in everyday tasks, like when you’re taking pills that you don’t want to take, but you’re taking them because you know that it’s going to help you. In a way, that’s a tiny practice in resilience.

The perspective exercise is to also see every little thing as, “How can I see this differently? By seeing it differently, I can do something differently. By doing something differently, I might get a different result.”

The chemotherapy before my bone marrow transplant was the hardest. The pain was the most intense. The fevers were relentless. I went into anaphylactic shock once during a platelet transfusion, but, luckily, I rang the call bell and everything was sorted.

I had a splitting headache and I got worried that it was a hemorrhage. Luckily, it wasn’t, but it was very important to articulate the sensation of how it occured. I timed it as well in terms of when it happened and how long it usually happened. This is important information to give to our medical team.

That’s what I mean by seeing things differently, being able to see everything that occurs. This is something that I can track. How can I build this case for my doctor to help me the best way they can?

Emily T.

I didn’t realize how difficult it was to get a donor. It’s complicated in the sense that your heritage matters.

Emily T.

Moving From Spain to Hong Kong

After the induction chemo in Spain, they gave me the green light to go back to Hong Kong. I told them, “I would love to continue here, but I don’t think the language barrier would serve me any good nor help you guys do a good job,” so I went back to Hong Kong.

I did all my consolidation rounds in Hong Kong as well as the bone marrow transplant. Luckily for me, Hong Kong had one of the most respected and prestigious transplant centers in Asia. It’s like everything was aligned.

I sought additional medical opinions outside of Hong Kong. I asked Australia, Canada, the UK, and Germany. The consensus was, “You are good where you are right now. Hong Kong has a very good system. They have a specialty specifically for bone marrow transplants there. They don’t even share that ward with anything else, specifically just for that. You are in a good place.” That was very comforting to know.

Bone Marrow Transplant

When they said that I needed a bone marrow transplant, I thought that it was going to be simple. I didn’t realize how difficult it was to get a donor. It’s complicated in the sense that your heritage matters.

The conversation of bone marrow donation is only very popular in first-world countries or mainly English-speaking countries so unless you have Caucasian genes, you have lesser chances of finding a bone marrow donor match all around the world.

This image was originally published in ASH Image Bank. Peter Maslak. Normal Bone Marrow Aspirate – 1. ASH Image Bank. 2005; 00003158. © the American Society of Hematology.

I was contacted by Be The Match as well as the Gift of Life Marrow Registry to see how they can help… Because of their reach, you have a higher chance of finding a donor.

Emily T.

Finding a Bone Marrow Donor

When I took my information to compare with my brothers, none of them were a match. Your siblings have the highest chance of being a match. They opened it up to Hong Kong and no one was a match. It was only when they opened it up internationally that increased my chances of finding a donor.

I was contacted by Be The Match as well as the Gift of Life Marrow Registry to see how they can help. I appreciate that these organizations are in place. Because of their reach, you have a higher chance of finding a donor, perhaps through one of their bone marrow donor drives.

Additionally, being a local in your area will play a big difference. My friends in Malaysia did a bone marrow donor drive at the pole dancing studio. My friends in Hong Kong did a bone marrow donor drive through a deadlifting fundraiser.

When it comes to the bone marrow donor, I didn’t realize that I had to pay a deposit for a search. I thought that was covered and you don’t have to pay for it, but I guess every country is different. At the time, I had to put down about HK$ 60,000 as a deposit to get the search going as well as cover the initial stages of getting a donor.

Emily T.

Emily T.

Once they have your information, they will put it in their system to see if anyone in their registry is a match. If they find a match, the registry will contact the donor to see if they’re still willing to donate and if they’re able to donate. If they’re pregnant, develop a disease, or age, these factors disqualify them from being able to donate. There are a lot of procedures before they even tell you that you finally have a confirmed donor.

The donor registry in Hong Kong did all of it. They got the news that they found a donor. The donor lives in China. Luckily for me, I was in Hong Kong at the time. China had a rule that they weren’t donating bone marrow anywhere outside of their territories except for Macau and Hong Kong. If I stayed in Spain, I probably wouldn’t have had the chance to receive that donation.

I don’t know if they changed their rules yet, but if they haven’t, that’s what you need to know. If you are of Chinese heritage and you can’t find a donor anywhere else, you need to be in a place where you can receive a donor from one of the biggest Chinese populations in the world.

Everything went well. I received the marrow. I remember specifically it felt like something glittery was coursing through the veins of my body.

Getting the Bone Marrow Transplant

That was probably my longest stay in the isolation ward. To optimize your chances of survival, they do everything in their ability so you don’t get a second disease while you’re in isolation at your most vulnerable.

There was a slight anxiety when I asked the doctor, “When exactly is the donation going to be? When is the marrow going to be extracted? When are they going to be on the way here? How long will they be kept until it’s time to be in my body?”

Emily T.

He said, “They will extract a few days before you are meant to receive the marrow.” I did the calculation in my head. I would be on day four of very intensive chemo, in which you made me sign a waiver that I might die from the chemo. If the donor changes his mind or something happens on the way, I might not receive the stem cells. The Chinese doctors said, “We try not to think about that. Let’s not talk about that.”

But to be fair, these are very important things to know. I’m the type of patient who the more you tell me, the more calm and collected I can be. When I don’t have the probabilities, my overthinking brain takes over and that’s not good for any recovering patient. In this case, knowledge is powerful.

Everything went well. I received the marrow. I remember specifically it felt like something glittery was coursing through the veins of my body. It wasn’t scary. It felt like a blood transfusion and that’s what it looks like. It goes through your port. It’s not painful.

As a precaution, they injected me with antihistamines and steroids because it’s possible to have an allergic reaction to some degree.

The graft versus host disease (GvHD) signs for me appeared earlier than what’s seen because typically, you only see signs after the two-week mark.

Side Effects of Bone Marrow Transplant

After the transplant itself, it’s expected that you will have side effects. The question is to what degree and how many of those side effects will require hospitalization or not. Most of my acute side effects happened while I was still in the hospital so they were able to counter many things.

I had a massive skin reaction. According to the doctor, the graft versus host disease (GvHD) signs for me appeared earlier than what’s seen because typically, you only see signs after the two-week mark. They saw signs within less than 10 days and it started with my skin then fevers and then mouth pain and headaches.

The skin was probably one of the hardest aspects as well because it was itchy. I had hives everywhere, including my face. It can be hard to look at yourself and even receive visitors during that time. If you’re a caregiver or want to visit someone, it’s not a bad idea to check in and respect that there are times when a patient doesn’t want to see anyone.

Emily T.

Emily T.

They gave me steroid creams as much as they could, but it was up to me to apply them diligently, especially when the weather was cold or hot. I kept asking for stronger medication, but the doctor said, “I can’t give you anything stronger right now because I’m waiting for the worst side effects to happen before I give you the stronger medication.” They were holding out on me for my good.

The gut pain this time was more intense. I was timing them as well to give the doctor an idea of what the pain was like and how frequently they were happening. Every patient is different. Sometimes we have to remind the doctors of that as well.

One of the common GvHD signs is the lungs are affected in some way. For me, it was the smaller airways at the bottom of my lungs. They’re not functioning anymore. They kind of have a blockage. I’ll be lying down sleeping and then I’ll start coughing all of a sudden because I need to get more air in.

The intensive chemotherapy I endured launched me into early-onset menopause… In my case, it’s chemo-induced and GvHD-related.

The more chronic GvHD signs that I’ve been living with until today are ulcers around the mouth. I had to change the food that I eat in terms of texture so no more potato chips because they’re too crunchy and stab my mouth. No more spicy food. Thankfully, I’m not a girl who loves spice anyway. There are certain seasonings that if they’re acidic, then I might get a nasty reaction as well.

Those are minor lifestyle tweaks. I’m happy to survive. If you talk to my current doctor in the hospital in Valencia, he will say, “Your quality of life is currently being affected. You’re not eating the foods that you like. Your sex life is very likely also affected. You can’t exercise as much as you can because of your lungs.”

But for me, part of the healing journey is also learning how to stop gaslighting myself. When it comes to disease management and having a background in health and fitness, it’s very common to hear people gaslighting themselves. “It’s fine, I can tweak it,” “It’s fine, I can do that,” or, “It might be this, it might not be that.”

One of the glands in my eyes is not functioning as well as it can so it causes very dry eyes. If you don’t manage it through medicated eye drops, regular checkups, and other practices, it can lead to worse eyesight conditions and ocular health.

Emily T.

Emily T.

Early-Onset Menopause

Part of the GvHD signs also include vaginal dryness, causing the capillaries in the lining of the wall to thin so during intercourse, pain and bleeding can happen. The intensive chemotherapy I endured launched me into early-onset menopause so that also played a big part in vaginal dryness. In my case, it’s chemo-induced and GvHD-related so it’s helpful to understand the options when it comes to hormone replacement therapy and not taking one doctor’s word for it.

Doctors in different regions are exposed to different types of studies and different types of statistics. In Hong Kong, when he found out that I had breast cancer in the family, he said, “Let’s not do hormone replacement therapy. Let’s wait it out. Even though you’re menopause right now, wait it out.”

But in Spain, when I went to a gynecologist, he said, “I would have put you on hormone replacement therapy seven years ago when your period stopped.” I took one doctor’s word for it. It’s always good to have a second or even a third opinion, preferably from different regions.

In the first two years after the transplant, I was not in the mindset for physical intimacy. It had a big impact on my relationship.

Follow-up Protocol

Before the transplant, they did a bone marrow aspiration to see where things were. Right before I was cleared to leave the hospital, they did another bone marrow aspiration to see where things were. But after that, based on my blood work, the doctor didn’t see a need for any more bone marrow aspirations or biopsy. The blood work was a roller coaster, but not to the point where there’s a red flag so that’s a plus.

The other scans that they did were around the lung area. I do a pulmonary function test every six months. That gives the doctor an idea to see if the GvHD is being controlled or advancing.

I’m in my fifth year after the transplant. I’m still here. Regular checkups are not at a fixed interval. It’s whenever the medical system can give me an appointment, which is around every 3 to 6 months.

The first 100 days after the transplant, is when they monitor the closest. I had to go to the hospital once a week then once every two weeks, once every three weeks, once every four weeks, and then it was stretched out from there.

In my case, I still had to go in to get medication intravenously. The doctor said, “You need to live with someone. You can’t live by yourself right now. If you pass out, if anything happens with your port, you need to be able to call for help.” That’s also important to recognize.

Emily T.

Emily T.

Design your home in a way that’s going to be conducive to healing and recovery. That was the first time I started yoga. I have a bit of yoga experience now.

In the first two years after the transplant, I was not in the mindset for physical intimacy. It had a big impact on my relationship. We’re no longer together, but he didn’t stop showing up as a supportive partner so props and kudos to him. He didn’t leave me in that sense.

I had to go through a stage where I had to learn what it meant. I don’t know if it was their training or culture, but whenever I asked questions about our sexual health, I wasn’t given a very open response. It was only in Spain that I had a doctor who initiated that question. “Tell me about your sex life. How are you doing right now? How is your sex? How is your health?” That prompted me to share.

As cancer patients, we have this ideal image of ringing the bell and being cancer-free. That’s our finish line, that’s the glory, but it’s not the case for everyone.

Words of Advice

What I learned in this journey is that you can go to all the specialists, experts, and trainers as much as you want. Go to a therapist, go to a counselor, find a coach, whatever it is. It comes down to you. Extrapolate the feedback that you get and come to your own conclusion on how healing will be for you. It doesn’t come down to a doctor telling you, “You are now cancer-free.”

My doctor said that he could not give me those words because there were no tests that could give me that guarantee. “I can tell you that you’re responding very well, but I can’t tell you that you’re cancer-free.”

Emily T.

Emily T.

Hearing that made me realize that as cancer patients, we have this ideal image of ringing the bell and being cancer-free. That’s our finish line, that’s the glory, but it’s not the case for everyone. It wouldn’t be fair to impose that on everyone.

You can take power back by deciding what you choose to do. If you want to see a therapist, see one. I saw three. If you want to talk to coaches, find one. I have plenty of coaches even until today. It doesn’t make you a weaker person. It doesn’t make you a weaker personality. It actually makes you brave.


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Categories
Active Myeloma bendamustine (Bendeka) Bispecific Antibodies Cancers CAR T-Cell Therapy CAR T-Cell Therapy Chemotherapy Clinical Trials CyBorD Cytoxan (cyclophosphamide) Darzalex (daratumumab) Darzalex (daratumumab) dexamethasone Immunotherapy Keytruda (pembrolizumab) Kyprolis (carfilzomib) Multiple Myeloma Patient Stories Pomalyst (pomalidomide) Revlimid (lenalidomide) Selinexor Stem cell transplant Steroids Talquetamab Targeted Therapies Teclistamab Treatments Velcade Venetoclax

Laura’s IgG kappa Multiple Myeloma Story

Laura’s IgG kappa Multiple Myeloma Story

Interviewed by: Stephanie Chuang
Edited by: Katrina Villareal

Laura E. feature profile

Laura, who was diagnosed with multiple myeloma in her late 60s, reflects on her experiences. As a former lawyer, she shares her journey from the shock of the diagnosis in 2012 to her various treatments, including participation in clinical trials.

She highlights the importance of having a supportive and knowledgeable doctor. She delves into the complexities of different treatments, including CAR T-cell therapy and bispecific antibodies.

Laura also discusses the challenges and adjustments in her life due to the diagnosis, the impact on her husband as a caregiver, and the importance of staying connected with the myeloma community.

Despite the ups and downs, she maintains an optimistic outlook, emphasizing the significance of having new treatment options and the support of a reputable medical facility. She shares how her life has been affected more by the pandemic than by her myeloma, expressing satisfaction with her current state while acknowledging the uncertainties that lie ahead.

In addition to Laura’s narrative, The Patient Story offers a diverse collection of multiple myeloma stories. These empowering stories provide real-life experiences, valuable insights, and perspectives on symptoms, diagnosis, and treatment options for cancer.


This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.


  • Name: Laura E.
  • Diagnosis:

    • Multiple myeloma, IgG kappa

  • Symptom:

    • Increasing back pain

  • Treatments:

    • VRd (Velcade, Revlimid, Dexamethasone) (August 2012)
    • Zometa (for bones)
    • Stem cell transplant (March 2013)
    • CyBorD (Cytoxan, Velcade, Dexamethasone)
    • Cleave study (didn’t last long)
    • Carfilzomib & panobinostat
    • CD47 study
    • Dara-Rd  (Daratumumab, Revlimid, Dexamethasone)
    • VenVd (Venetoclax, Velcade, Dexamethasone)
    • PCd (Pomalyst, Cytoxan, Dexamethasone)
    • Pomalyst, Bendamustine, Dexamethasone
    • Bendamustine, Dexamethasone
    • CAR-T trial BB2121 (October 2018)
    • Pomalyst, Daratumumab, Dexamethasone
    • CAR-T trial with GSI (Summer 2019)
    • Pomalyst, Keytruda
    • Cytoxan, Dexamethasone
    • Teclistamab trial with Daratumumab (2020)
    • Talquetamab trial with Daratumumab (2021)
    • Selinexor and Carfilzomib

Laura E.



Introduction

I’m getting up there in years. I can’t believe I’m this old, but here I am, almost 78, and have had a pretty full life.

I was a lawyer. I have a son that I adopted as a single parent and then I got married. 

I lost my first husband to cancer. We think it was stomach and liver cancer, but by the time it was discovered, it wasn’t entirely clear.

My second husband was somebody I’ve known since I was 15. We have a wonderful relationship and he’s been a wonderful companion in this journey with multiple myeloma. We lost touch for some years and we had some good friends who, at some point, decided that we should get together. They plotted to get us together and it worked.

My primary care physician said, ‘You have multiple myeloma and it’s treatable. I have patients who’ve lived for 10 and 20 years with this disease.’ I felt a lot better.

Diagnosis

Getting the Diagnosis

I was diagnosed in 2012.

The attending doctor at the emergency room wanted to give me a prescription for physical therapy and send me home. I said no. It wasn’t fair to the physical therapist to have to figure out what the problem was. She left the room and sent a younger doctor in after a while.

The younger doctor said I had two choices. One was the option I’d already refused and the other was to have a CT scan so I thought I’d have that one.

Meanwhile, the shift changed. The next attending physician came in and told me I had cancer. This was in the emergency room in the middle of the night. I went home with my husband and left a message for my primary care physician.

After a long day of seeing patients, he called me at about 8 o’clock in the evening. He said, “You have multiple myeloma and it’s treatable. I have patients who’ve lived for 10 and 20 years with this disease.” I felt a lot better. It didn’t relieve all of the bad feelings about having a cancer diagnosis, but it certainly made me feel better than what the first doctor had said.

When my primary care physician told me that it was treatable, it made a difference in how I felt about it.

Reaction to the Diagnosis

Even though I’d had some experience with cancer before, it still came as a terrible shock when I was told I had it. I wanted to press the reset button and have this not happen, but that’s not possible.

We were both devastated. I’d never even heard of this disease. My husband had, oddly enough. His father had had it so he knew a little about it.

I’m still doing okay. I keep having new treatments. They only last for a fairly short time with me. If it’s a good treatment, it lasts a year or less. If it’s not such a good treatment, it might not even last that long.

When my primary care physician told me that it was treatable, it made a difference in how I felt about it. It wasn’t nearly as scary. I accepted what he said and felt a lot better.

When you’ve had as many treatments as I’ve had, sometimes you come to a point where it’s difficult to know what the next step is.

Seeing a Myeloma Specialist

Because my husband knew about this disease, he met Dr. Durie at the International Myeloma Foundation and asked, “Who should we get to treat Laura?” He gave us Dr. Martin’s name so we managed to get in to see him and he took me as a patient. He wasn’t nearly as famous in 2012 as he is today. He’s been my doctor all along and I’m really glad.

I feel like he’s done right by me. When you’ve had as many treatments as I’ve had, sometimes you come to a point where it’s difficult to know what the next step is. He always has my best interest in mind. He knows a lot. He’s a really good doctor.

Once when I needed a new treatment, he told me that he had nothing to offer me so he helped me get on waiting lists at three other hospitals. When one of them came through, he encouraged me to take it and I did. He had my interest at heart.

Treatment

I started my first treatment in August 2012. They call it VRd. It’s a pretty common first treatment. They’re starting to change the usual first treatment, but for a long time, that was the first treatment almost everyone got. Unless you had a terrible reaction to one of the treatment drugs, you had VELCADE, REVLIMID, and dexamethasone, and that went on for several months.

I didn’t know much about clinical trials until I got involved.

Joining Myeloma Clinical Trials

I’m not sure exactly how many treatments I’ve had because there have been some changes that may or may not have been a separate treatment. I think I’ve had about 16 different treatments, 12 of which were clinical trials.

There were a couple of clinical trials near the beginning of my treatment that only lasted a month or two. He took me off them because they weren’t benefiting me.

I didn’t know much about clinical trials until I got involved. I know there are some misconceptions that a lot of people have, especially whether you’re going to get the study drug. In phase 1 and phase 2 trials, you get the study drug. I’ve only had phase 1 and phase 2 trials so I know I’m getting the drug that’s been described to me.

On more than one occasion, when it came time that I needed another treatment because the one I had been taking had stopped working, Dr. Martin would explain to me what the options were.

We’d have a meeting where he’d explain to me the possibilities. Typically, if I didn’t already have a pretty good idea of what I wanted, I would ask him which one he preferred for me. He’d tell me which one he thought was best and I’d usually go with his recommendation. He wouldn’t insist on it. He would only tell me his preference when I asked him.

It’s good to be near where you can not only get help but that has all of my records and access to the information that a doctor would need to deal with whatever the problem is.

Factors to Consider When Deciding to Join a Clinical Trial

Efficacy is, of course, very important. Sometimes side effects affect my preference but not often. I don’t even know how those side effects are going to feel until I experience them.

One of my other health issues is gastrointestinal issues so if a treatment is going to affect my GI, I would want to know about it and evaluate how that affects my choice. It won’t necessarily prevent me from entering into that trial, but it’ll be a consideration.

I’ve only traveled once and that was when Dr. Martin didn’t have an option for me. I prefer to stay at UCSF for several reasons, one of which is that if I have side effects, that can be addressed right away.

Side effects can be relatively minor or they can be major. There have been occasions when my husband puts me in the car late at night and takes me to the emergency room. It’s good to be near where you can not only get help but that has all of my records and access to the information that a doctor would need to deal with whatever the problem is. That’s important.

When I did go to another hospital, it was in Seattle and now my Seattle records are connected to my UCSF records. I have a doctor in Seattle, too. I don’t see him anymore, but that connection is very important. Being someplace where they know enough to know what to do is key.

You want to know about the experience of other people who’ve been in this clinical trial.

Extra Considerations in Traveling for a Clinical Trial

Seattle makes it easy for you. At the time, it was called the Seattle Cancer Care Alliance. The same place is now called Fred Hutchinson. They arrange housing for you and they have a shuttle that takes you to the clinic and the store.

I went there alone and didn’t think I needed a caregiver right away. One day, they told me that I needed a caregiver for a particular test that I had to undergo. I was living with other myeloma and cancer patients. They didn’t have anything to do except go to the clinic so there were lots of people who volunteered to help me that particular day.

Eventually, my husband had to come. I spent two and a half months in Seattle for this. He was there for maybe two months, I’m not sure exactly.

Clinical Trial Paperwork

They always send you a copy of the paperwork before you decide to join the clinical trial so you have a chance to look it over. I know that some people might find it daunting, but one of the things they have in that consent form is a list of the possible side effects. You can read all about it and ask questions before you sign.

I know where to look for all this so I go straight to it and ask questions. It’s easy to understand. It’s surrounded by a lot of other words, but if you find the possible side effects, that’s what you want to look at and ask questions about.

You want to know about the experience of other people who’ve been in this clinical trial. In Seattle, they told me that one of the participants had died so I wanted to know about her health. After they explained it all to me, I decided that I was considerably healthier than the patient who had died and it was going to be okay.

Expenses Related to Clinical Trials

My insurance paid for just about everything that the trial didn’t pay for. The sponsor will pay for anything new. Your insurance will pay for other things that have to be done anyway.

The most expensive was travel to Seattle and housing in Seattle. I had to pay for that.

My first CAR T didn’t work so well for me and we’re not entirely sure why.

CAR T-cell Therapy

I joined a CAR T trial in 2019.

The great thing about CAR T is if it works for you, it’s one and done. Once you’ve had the treatment, you don’t need treatment again for a while.

Like a lot of us, the treatment doesn’t last forever. It lasts for a while and you don’t have to keep coming back for additional infusions or anything like that. If it works, it’s great.

My first CAR T didn’t work so well for me and we’re not entirely sure why. It brought my numbers down, but not enough so I still needed treatment.

One theory is that I’d had bendamustine before, which might have made it difficult for the CAR T to work, but I don’t think anybody knows if that’s the answer.

Like a lot of us, the treatment doesn’t last forever.

Preparing for CAR T-cell Therapy

They take the T cells out of your body by running your blood through this contraption, which has a centrifuge that can separate the T cells from your blood and give the rest of it back to you. To do that, they put this giant thing in your neck to get the blood out and that’s just annoying, but it’s not terrible.

They put the re-engineered T cells back into you and look for the side effects. Neurotoxicity and CRS, which means cytokine release syndrome.

I had a very strong reaction to my second CAR T. I had a day when I was completely out of it. They tell me I couldn’t answer simple questions like, “What’s your name?” I don’t remember a thing from that day. All of my organs were affected. They were afraid that I’d had a heart attack, but I didn’t. It was a very strong reaction.

It worked. I’m not sure how long for exactly, but it was about a year.

I cope with this kind of uncertainty reasonably well. Not everybody does, I suppose.

Comparing CAR T-cell Therapy to Other Myeloma Treatment Options

CAR T is over so quickly compared to the others.

I did have a problem that showed up right after the treatment. I got parvovirus, which doesn’t affect most people, but it caused me to need IVIG. That takes care of the problem, but it complicates our ability to measure how well I’m doing.

If you put a lot of IgG into my body, it looks like there’s more cancer, but there isn’t. It’s not cancer. It took a little longer to figure out that it worked as well as it did, but it did work.

Dealing with the Wait

I cope with this kind of uncertainty reasonably well. Not everybody does, I suppose. For example, I think this is harder on my husband than it is on me sometimes because he has a completely different personality.

I’m optimistic and I believe that Dr. Martin is doing something that’s going to work for me. Now, my husband believes that Dr. Martin is doing right by me, too, but he’s naturally not as optimistic.

Like most patients, I get checked regularly so it’s not a big surprise when a treatment stops working. When my M protein reaches 1.0, it looks like another treatment is under consideration. We start thinking about it even before we reach that point.

Bispecifics are a very good choice, especially if you can get them at your home medical center.

Bispecific Antibodies

I’ve been on two of them so far.

He described all the options that were available at that point. He first recommended teclistamab. The second one was talquetamab, which hasn’t been approved yet.

Teclistamab was a good treatment, but I don’t remember the specifics. I think I was on teclistamab for the better part of a year.

I remember talquetamab better because it was problematic. Some of the side effects of talquetamab were annoying. The target molecule was something that was not just on myeloma cells but also on fingernails, toenails, and the tongue. Some people lose their fingernails altogether and food doesn’t taste the same. That was pretty annoying.

Bispecifics are a very good choice, especially if you can get them at your home medical center. Some new ones are coming out that I haven’t tried yet.

It didn’t affect everybody the same way, but I couldn’t stand eating blueberries and pears.

Side Effects of Bispecific Antibodies

The fingernails weren’t so terrible. The palms of my hands and the bottom of my feet also got a little red and peeling, but that’s not so terrible. I only lost a part of my fingernails and toenails. But the taste buds affected my everyday life because there were things that didn’t taste right.

It didn’t affect everybody the same way, but I couldn’t stand eating blueberries and pears. They tasted salty to me. I didn’t like anything spicy because it was very harsh to me. It affected what I would be willing to eat and eating is an important part of your life.

It was very unpleasant and I didn’t like it, but it didn’t cause me to stop treatment. I persisted, but I was annoyed all the time. Other people had different changes to their taste buds. Some people liked having hot foods and wanted them all the time.

It still caused a lot of nausea and throwing up so I had to stop because I was losing a lot of weight.

Selinexor & Carfilzomib

I was on it for about two months.

Selinexor also had a negative effect on my taste buds. I was given prescriptions for several anti-nausea drugs, but it still caused a lot of nausea and throwing up so I had to stop because I was losing a lot of weight. Not only was the food not tasting very good, but I couldn’t keep it down. But it kept my numbers down for a long time, even though I stopped taking it.

Dr. Martin and the nurse practitioner knew. I would come in regularly and one of the things they always do is weigh me and it was obvious. My weight was going down. At some point, Dr. Martin and I came to the conclusion about the same time that I really shouldn’t be taking selinexor anymore so he took me off.

It’s a nice holiday. I know it’s not going to last and that’s okay.

Treatment Holiday

My numbers have stayed down for so long even without treatment. At first, he only took me off selinexor. I was taking another drug with it at the same time and he took me off that, too.

I haven’t had treatment since November 2022, but I’m going to need treatment again soon. My antibodies are good so I don’t feel like I’m in danger every time I walk out the door. It’s been fine.

It’s a nice holiday. I know it’s not going to last and that’s okay. But it’s a nice thing to be able to do and to be able to do it at a time when I’m not too worried about COVID because my antibodies are good. I don’t want to get it. I’ve had it once, but I feel like I can enjoy a holiday.

I feel some freedom that I didn’t have for a while. Getting myeloma treatments usually means that there’ll be a problem with antibodies again, a problem with white cells. I’ll have to be more careful.

The diagnosis didn’t change my life nearly as much as the pandemic… The worst part is I don’t get to see my grandchildren much.

Living Life with Myeloma

A lot of people have given up masks and I’m not talking about myeloma patients. They think it’s a little odd when people continue to use them. I do what I need to do, but I feel a lot freer walking around without one nowadays. I know when I start treatment again, I’ll have to be careful again. That’s okay.

I’m satisfied with how my life is going. I’ve come to know some people in this journey that I like very much and it’s a very important part of my life now. I do other things. I have a nonprofit that I do a bunch of things with. Most of the meetings that I go to, I do on Zoom. Hardly anybody ever sees me in person, but occasionally they do.

I have a lot of friends in this community. People I meet when we have a support group meeting are people I keep up with. We might not go out to dinner together, but I feel like I know them and care about them. They’re people I’ve gotten to know and care about. We happen to have the same disease, but what’s important is that we met.

The diagnosis didn’t change my life nearly as much as the pandemic. My husband and I did some traveling. I wasn’t working full-time anyway. I moved from Virginia to California so I wasn’t practicing law. I was doing some arbitrations and I still do.

After the pandemic set in in early 2020, I couldn’t travel and that’s made more difference than having myeloma. Or having myeloma alone anyway.

I don’t think I’ve changed too much. The lawyer you meet today isn’t that much different from the lawyer who existed before. I have this disease and it limits me. The pandemic limits me, but I still get up every morning and do things that I like to do so that’s good.

The worst part is I don’t get to see my grandchildren much. My grandson, who was 13 last summer, visited me all by himself. He was great. He followed my instructions, got a COVID test, and wore glasses and a mask on the plane. He wanted to make the trip and had a good time. His little sister was extremely jealous, but she was too little to make the trip by herself. That will have to wait for a while.

Sometimes I think it’s harder for the caregiver than it is for the patient.

Husband as Caregiver

He has been such a loyal caregiver. Recent changes have been more important in a way because it’s been such a long, hard journey for him.  More than half of our marriage has been consumed with multiple myeloma and it’s affected his life at least as much as mine.

Sometimes I think it’s harder for the caregiver than it is for the patient. In our situation, I’m the one who makes decisions about my care. I listen to my husband because he comes with me most of the time. He has opinions, too, but I get to make the decision and he doesn’t. That’s much harder on him and I understand that.

It’s also coming at a time when we’re losing friends. This has happened to him more than it has to me. A lot of his friends have died these past 10 years and it becomes lonelier and lonelier when you don’t have your friends around. He still has some who are still living, but it’s making his life harder.

Having a wife with this terrible disease doesn’t help because I can’t help him with some of these things. We need to acknowledge that. Everybody works out these issues their way, I think.

Importance of Having New Treatment Options

I’ve had most treatments so I can run out of options. I don’t think I’ll run out of options completely, but it’s a little worrisome. I want UCSF to stay ahead of what I need.

If I have to, I could go somewhere else. It’s not my preference because I think it’s much better to be able to stay in my home medical facility.


Laura E. feature profile
Thank you for sharing your story, Laura!

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Categories
Cancers Chemotherapy Colon Colorectal FOLFOX (folinic acid, fluorouracil, oxaliplatin) Partial colectomy Patient Stories Radiation Therapy SBRT Surgery Treatments

Jason’s Stage 3B Colon Cancer Story

Jason’s Stage 3B Colon Cancer Story

Interviewed by: Alexis Moberger
Edited by: Katrina Villareal

Jason A. feature profile

Jason was diagnosed with stage 3B colon cancer at 36. He first experienced minor abdominal pain and blood in his stool. His concern grew after repeatedly encountering colon cancer in online searches.

No abnormalities were detected after a visit with his general physician. Despite reassurances that colon cancer is unlikely in a healthy 36-year-old, he pushes for a colonoscopy referral.

Because of pandemic delays, his anxiety grew, leading him to seek emergency room evaluation. A CT scan revealed a mass in his colon and enlarged lymph nodes while a subsequent colonoscopy confirmed the presence of a tumor. Pathology results indicated the presence of cancer cells in some lymph nodes.

Jason reflects on the shock of the diagnosis, the emotional impact, and the difficulty in breaking the news to family and friends. Throughout his journey, he learned the importance of actively participating in one’s health care, advocating for oneself, and seeking support from organizations and communities. He also highlights the impact of a cancer diagnosis on caregivers and the need for a strong support system.

In addition to Jason’s narrative, The Patient Story offers a diverse collection of colorectal cancer stories. These empowering stories provide real-life experiences, valuable insights, and perspectives on symptoms, diagnosis, and treatment options for cancer.


This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.


  • Name: Jason A.
  • Diagnosis:

    • Colon cancer

  • Staging:

    • 3B

  • Initial Symptoms:

    • Abdominal pressure
    • Fatigue
    • Small amounts of blood in stool

  • Treatment:

    • Surgery: colon resection
    • Chemotherapy: FOLFOX (folinic acid, fluorouracil, and oxaliplatin)

Jason A.

Jason A. timeline

Jason A. timeline



Introduction

I live in Ottawa, Canada, with my wife Leslie, our three-year-old daughter Kira, and our dog Sage.

I love the outdoors. I’m a big runner. Over the last few years, a big passion of mine has been doing a lot of advocacy work and peer support in the cancer world.

Jason A.

It was the blood in the stool that got me thinking there was something more going on.

Jason A.

Pre-diagnosis

Initial Symptoms

My story started when I was 36. I was a healthy, active, very typical 36-year-old adult. I was in the prime of my life. I was happily married and work was going well.

I started getting very minor abdominal cramps and pains that I’d never really felt before. I thought it was stress, something I ate, or a pulled muscle. I didn’t think anything of it.

Then I started to have a little bit of blood in my stool. It was very, very minor. It could have very easily been passed off for hemorrhoids, an inflammation in the intestine, or an infection in my GI tract.

But when I was searching “abdominal cramps, blood in the stool” on Google, colon cancer kept coming up. It wasn’t on my radar, to be honest, but the fact that it was there got me thinking about it. I got concerned when that started popping up over and over again.

Seeing a General Physician

In September 2020, I went to see my GP. I don’t think my early symptoms were what you often hear. I wasn’t in debilitating pain or needed emergency surgery.

My doctors even said they didn’t necessarily know if that had anything to do with the colon cancer because it was so mild. It was more like a nuisance. It was a little bit of pressure here and there, the odd spasm-like sensation. It came and went. There was nothing persistent. There was nothing that affected me dramatically. It wasn’t something that concerned me. It was the blood in the stool that got me thinking there was something more going on.

Jason A.

Jason A.

My tumor was quite small. It was only about 2 x 3.5 cm. Because of the size and where it was, which was in my sigmoid colon, my doctors don’t believe that a lot of that pain even had anything to do with that. At the time of my diagnosis, I had a very physical job. I was running and working out all the time so it could have been anything.

My GP is awesome. We have a great rapport. She has my back and has always taken good care of me. The day I went in, it was clinic day and they had residents working with the doctors. I got to meet one of her residents who was probably around the same age as I was.

He did everything I was expecting. He asked all the questions. “How long have you had the symptoms?” “Are they impacting bowel movements?” “Are you eating?”

Because of the blood, he did a digital rectal exam, but he didn’t feel anything nor was there anything odd so he left it as potentially an infection. It could be an inflammation from a hundred different things. Hemorrhoids and stress came up, the typical stuff you hear when you have things going on in your stomach. But I pushed back a little bit because I was concerned that I kept seeing colon cancer come up every time I searched on Google.

Part of the visit I always try to highlight was him looking right at me and saying, “Mr. Abramovich, you’re 36. You’re healthy. This is not cancer.” At the time, that was reassuring. When he said that, it was a huge weight off.

I still saw my actual GP afterward and she was honest. She did say that it’s very unlikely. She didn’t dismiss my concerns, but it was unlikely that a healthy 36-year-old adult had colon cancer and that was a fair assessment.

However, she’s quite diligent. She asked if I wanted to have a referral for a colonoscopy and I said, “Absolutely. That’s what I was hoping to get out of the appointment.” I hope the resident that I saw found out what happened. It happened right in front of him. He sat with a healthy, 36-year-old male and said, “It doesn’t happen to young adults.”

The scary thing was how many other patients he could’ve said something like that to. This was a brand new doctor who still thought that young adults couldn’t get this disease. It’s disheartening that it hasn’t hit home yet in medical school that it could happen to anybody.

Jason A.

My anxiety was getting quite high and I was getting worried… There was too much waiting and I wasn’t doing well with it.

Jason A.

Diagnosis

Going to the Emergency Room

My situation unfolded a little bit differently in the sense that this was all during the pandemic so everything was a little bit delayed. I had a little bit of a wait to get a colonoscopy because I wasn’t presenting urgent symptoms. It was more exploratory.

I was on a two- to four-month wait to get that colonoscopy done. However, my GP is an ER physician as well in the hospital and said, “If it’s getting worse or you want to get this solved quicker, go to the ER so you’ll have access to this a lot quicker.”

After a couple of weeks, my anxiety was getting quite high and I was getting worried. My wife had very gently encouraged me to go to the hospital and get it looked at for the good of my mental health. There was too much waiting and I wasn’t doing well with it.

I ended up in the ER because some of the symptoms were getting a bit worse. Again, I was looked at as a healthy 36-year-old adult. They did a physical exam. My blood work came back perfectly. My CEA was 1.8. It’s never changed. It’s always stayed at that so they were leaning towards diverticulitis, stress, inflammation, and everything they consider before cancer because of my age and my health.

Getting a CT Scan

The ER physician decided to do imaging. He wanted to do a CT scan to confirm what his thoughts were because he didn’t want to give me antibiotics unnecessarily.

I came back the next day and did the CT. About an hour later, he called me. I knew right away that something was wrong. From working in emergency services, I know people’s demeanors and the whole process of giving someone some bad news so I knew right away that something was up when he called me back.

He took me back to a private room, sat down on the bed right next to me, showed me my CT report, and said they found a mass in my colon. They also saw some lymph nodes that were enlarged regionally in that area.

Jason A.

Colonoscopies are not scary at all. They’re pretty smooth and painless.

Jason A.

Getting a Colonoscopy

I didn’t have a colonoscopy until after they found the tumor on a CT scan.

Colonoscopies are not scary at all. They’re pretty smooth and painless. To be honest, the most uncomfortable part is the prep to clean out your bowels but, at the same time, it’s not that bad. You have to drink a whole bunch of liquid that doesn’t taste very good.

Would I rather not have to do them? Absolutely. But at this point in my journey, I’ve had about 3 or 4 of them.

When you get the procedure done, you’re comfortable. I didn’t feel a thing. The staff was great. They gave me the choice to be awake or be totally out based on my comfort level.

The whole procedure lasted about 25 minutes. In my situation, I found it neat and a little empowering because I stayed awake. My surgeon did my colonoscopy and showed me my tumor. She explained where it was exactly and gave me an idea of what was going on, which I thought was cool because you never really get that perspective.

A procedure that could save someone’s life or make a drastic difference in an outcome is a no-brainer. I talk a lot about colonoscopies because a lot of people are scared of them or don’t want to do them. There are so many myths about them, but they’re quite simple, pretty comfortable, and quick procedures to get done.

Reaction to the CT Scan Results

I was in complete shock. This was the complete opposite of what anybody thought that was going on.

Unfortunately, given the pandemic, I was alone. It was not a pleasant situation. I know the staff felt quite bad as well. They were doing their best to comfort me and do what they could.

I was able to call my wife to let her know what was going on, but she wasn’t allowed in the hospital. She drove down and waited in the parking lot in case I needed anything.

I had an amazing medical professional. The nurse I had that day was phenomenal. She was a blessing in disguise in a difficult time. We were very similar in age so I think what was happening hit home to her.

The rest of that day was a blur. I was fortunate that my GP had a lot of connections at that hospital. I got a quick emergency procedure done to do a sigmoidoscopy and get a biopsy done.

Jason A.

Jason A.

Getting a Sigmoidoscopy & Biopsy

When I woke up, the general surgeon was very open with me. He said that he was 99% sure that we were looking at cancer. I was coming out of sedation so it didn’t hit me how it necessarily would if I wasn’t. Luckily, my wife was there.

Waiting and not knowing what was ahead, those few days after finding out were tough in many different ways.

Reaction to the Diagnosis

We went home in shock. We didn’t know what to say or what to do. We had a five-day wait to get the biopsy results back.

We both decided to keep working to keep things as normal as possible throughout the week. We tried not to sit around, thinking and waiting, because it wasn’t going to make anything easier.

That Friday, I got a call in the parking lot as I was leaving work and it was the general surgeon with the biopsy results. He confirmed that it was cancer, that he was sending all of my files immediately over to The Ottawa Hospital Cancer Centre, and that I’d be hearing from them at some point early the following week.

At that point, everything came crumbling down. I remember driving home and having to pull over on the side of the highway. My wife had to meet me because I couldn’t. I wasn’t there. When she pulled up, I was walking up and down the side of the road, in shock. I didn’t know what to think at that point.

We cried a bit. We drove home and were in shock for a few days. Waiting and not knowing what was ahead, those few days after finding out were tough in many different ways.

Jason A.

Jason A.

Breaking the News to Family and Friends

The toughest part was having to tell people because there’s very little cancer history in my family. I didn’t have any predispositions to anything that made sense.

Having to tell my family and friends was quite the thing. My wife played a huge role. She told a lot of people because I didn’t know what to say. I couldn’t have those conversations at that time.

The tumor was small and in a place they could reach very easily. They can take a few inches of my large intestines out and reconnect everything.

Treatment

Getting a Sigmoidoscopy

The initial procedure was a sigmoidoscopy. If I recall, it was 30 minutes between getting sedated and waking up again. There was no recovery, to be honest. I had a bit of a little discomfort in my rectum area, but beyond that, it was a quick, painless procedure.

I was very naive to the cancer world. You always hear of stages because of how cancer is portrayed in the media and on social media, I guess.

All my stuff got sent to The Ottawa Hospital. The following week after the biopsy confirmation, I heard from the colorectal surgeon’s office and they reviewed everything. Because the tumor was quite small, they decided to do surgery upfront.

Jason A.

Jason A.

Colon Resection

They weren’t sure if the lymph nodes they were seeing were involved. They couldn’t confirm that at that point. But what they did know was the tumor was small and in a place they could reach very easily. They can take a few inches of my large intestines out and reconnect everything.

Between the first week of December and about mid-January, I was doing pre-surgery workups, like blood work and pulmonary tests. They checked my heart and my lungs. I met with the anesthesiologist and the prep nurse. I had two MRIs because my stomach was not behaving and there were motion artifacts so they had to redo it.

Following that, I had a colonoscopy so they could go in, take a look, and mark the tumors because that’s how they locate them when they do the surgery laparoscopically. They also wanted to check the rest of my colon. Everything was clear. There were no other areas of concern.

I had my surgery on February 19th and it went smoothly. There were no issues. The surgery was about 3 1/2 hours. They were able to do it laparoscopically so it was minimally invasive, which was great. They ended up taking out about 6 or 7 inches of my large intestines and were able to reconnect the plumbing, as my surgeon called it.

I had a lot of support. My family was great. During that time, I found great social and emotional support groups that helped me during that time.

Recovering from Surgery

One of the things I was worried about was whether I was going to wake up with an ostomy bag. That was a big relief. I know it’s silly but out of everything, that was the big stressor for me. In retrospect, it’s probably the least that can go wrong.

Hospital stays are normally 4 to 7 days, depending on what happens. I was lucky I got out in three. The surgeons were happy. I went in strong and healthy. I was up and walking the next day.

The pain wasn’t too bad. I was off pain meds the next day. I was switched to Tylenol 3s. They sent me home with a bit of codeine. I used it once and beyond that was regular Tylenol.

I was in good shape. I worked out going into the surgery and prepped myself for it so that helped with the recovery as well.

In my mind, everything was great. The surgery was successful. Recovery was going well. There was the stress of all of this happening during COVID and being in the hospital was not fun.

Jason A.

Jason A.

After I got home, they called me because a nurse that I had tested positive. Luckily, I was negative, but it was a pretty stressful situation because I’d been home for a week already and my family was around me. Everything was great, but that was a stressful little situation after a pretty stressful situation of major surgery.

I was active during my recovery. Some days were more difficult and there was a little more pain. The first couple of weeks especially were frustrating. I’m active and independent. I work out, run, and lift weights, but for six weeks, I couldn’t even lift the laundry basket. I took handfuls of laundry in little scoops at a time. We went to buy groceries and I was able to carry in one item at a time. 

That was quite challenging mentally. Going from being strong, healthy, and independent to suddenly being unable to do anything for yourself. That was tough, but I got through it.

I had a lot of support. My family was great. During that time, I found great social and emotional support groups that helped me during that time. Getting onto some Zoom calls, talking to other patients, and making those peer connections definitely made recovery a lot easier.

There were cancer cells in 7 out of the 25 lymph nodes that they removed so that took me from what they thought was stage 1 or 2 to stage 3B.

Getting the Pathology Results

We had to wait for the pathology results. They took out the tumor, but they also took out about 25 lymph nodes that had to get sent to pathology so there was about a four-week wait for all that to come back.

When we got the pathology results, unfortunately, it showed that there were cancer cells in 7 out of the 25 lymph nodes that they removed so that took me from what they thought was stage 1 or 2 to stage 3B, which was a pretty big jump. I was not expecting that.

In retrospect, my stage still had great odds and was a very manageable stage, but it was still a shock to hear. It was more of a shock because I knew that meant chemo. It made the difference between everything being over after surgery and having a whole other adventure in this situation.

Jason A.

Jason A.

FOLFOX Chemotherapy Regimen

My diagnosis was stage 3B colon cancer. After recovery, I was lined up for six months of FOLFOX (folinic acid, fluorouracil, and oxaliplatin).

A couple of days before my first treatment, I went to the cancer center to do my chemo education. The first time I walked in, everything hit home. Up until that point, it was scary and traumatic. Hearing I had cancer was huge, but the surgery was like any other surgery. There was nothing different just because it was cancer surgery. The recovery was very smooth.

Walking into that cancer center and being a patient, not going there to visit someone or cut through to go to another part of the hospital, was quite the gut punch. That was a very big moment.

The beginning was a very interesting experience. The staff was amazing. They took great care of me. They took me on a tour. They educated me about my chemo and helped me choose if I wanted a PICC line or a port.

But one thing that stood out was every time I go to the cancer center, people look at me and wonder why I’m there. They don’t realize that I’m a patient. I’ve been asked several times, “Who are you picking up? Who are you visiting?” And when I say I’m here to get chemo, they give you the big deer-in-the-headlight look like it doesn’t make sense.

Waiting rooms are strange because I’m young and I look healthy and great. I would say 99% of the people are 50- to 60-plus. Most of them look pretty rough. The whole experience is very different. It’s really sad to say that I’ve gotten used to it. I put my blinders on, do my thing, and leave.

Those first couple of months were tough because they magnified and amplified the why me. Why am I the only 36-year-old sitting in this place? I treat myself well. I’m young and healthy beyond this, but I’m sitting in this room with all these people. That was quite a challenge as well.

Jason A.

Jason A.

The friends I made in Man Up to Cancer helped a lot because I was able to talk to them about that stuff. I quickly realized that it’s a widespread experience for a lot of people, especially younger adults. When you realize you’re not necessarily alone, it makes it a little bit easier to deal with.

Any colorectal cancer person is very familiar with the chemo regimen I did. I did six months of FOLFOX. I did 12 treatments.

I did a lot of things to help myself, which I do think made my experience with chemotherapy a little bit different.

Side Effects of FOLFOX

I tolerated it quite well. I was lucky in that regard. I worked while I was getting my treatments. I was quite active. They took great care of me.

I’m not going to sugarcoat it. There were days I felt like crap, but I also took control of a situation that I had very little control of. I did a lot of things to help myself, which I do think made my experience with chemotherapy a little bit different.

I got through the 12 cycles with no incidents. I did chemo from April until September 2021. My last session was on September 23rd. After that, I was NED (no evidence of disease) essentially. I was graduated to surveillance and that was supposed to be the end of it.

Jason A.

Jason A.

I know I did a lot, but I got very lucky. My body took to it very well, fortunately. The major side effect that I had was fatigue. I had quite a bit of fatigue.

My skin was not happy. I have sensitive skin as it is, but it did a number on my skin with rashes, dryness, and cracking. I had a pretty rough time with that at some points.

The neuropathy was not fun. Anyone who’s done FOLFOX knows that neuropathy from oxaliplatin can get pretty nasty, but I did a lot to counter it. It wasn’t too bad.

My oncologist and I have a great relationship… He’s very open to things as long as he has good data to make an educated decision.

Managing Neuropathy

To combat neuropathy, I worked with a naturopath. I took a lot of supplements. I did acupuncture, reflexology, and massage. I was doing all kinds of alternative stuff.

In my cancer center, I was one of the first people to do icing. I iced my hands and feet during every infusion of FOLFOX. I know in the States, in some of the larger cancer centers, it’s been a bit more common in the last few years, but in my cancer center, at that point, no one ever did that before. Everybody was dumbfounded by that because why would you ice your hands and feet with a chemotherapy agent that has extreme cold sensitivity?

I was fortunate to be hooked up with COLONTOWN. I was able to present my oncologist with studies, actual data, and factual information as to why it’s used.

My oncologist and I have a great relationship. We have a lot of respect for each other. He’s very open to things as long as he has good data to make an educated decision. I was the first person to do icing at my cancer center on FOLFOX and now he recommends that to a lot of his patients. He gives that as an option to anybody moving forward with that regimen so that’s cool.

Jason A.

Jason A.

I don’t know the detailed science behind it, but essentially what it’s supposed to do is help with the cold sensitivity because it restricts blood flow to your extremities. It shrinks your veins and arteries down so you don’t get as much blood flow in that area. I guess the theory is not as much chemo gets to your hands and feet so it lessens the cold sensitivity effects.

I’d put my hands in the freezer, pick up frozen food, and be okay. Patients who didn’t do that couldn’t even touch a cold cup. You’d get shocks and it would be extremely painful. I would take all these videos to show to my oncologist and he loved them because it’s not something that he was familiar with at that point.

There’s so much stuff out there and it’s not his fault. It seems a lot of stuff from the States comes to Canada 3 to 5 years later. It hasn’t gotten here yet, but it’s becoming more common. I’m happy that I got to try it and it benefited me so it’s going to benefit a lot of other people that come after me, too, which is cool.

Celebrating the End of Treatment

After I had my last chemo on September 23rd, I rang the bell. I had a nice big celebration. I hugged all the nurses there.

After six months of going in by myself, my wife was allowed to come in for my last treatment, which was cool because she’d never seen the cancer center because of the restrictions. She didn’t know what happened to me for three hours when she dropped me off at the front door. It was really neat for her to see what the process was and what I’d been doing for six months.

The plan was a couple of months after, I was going to get a follow-up scan to get a post-chemo baseline. That scan came back clean. At that point, I was under surveillance. I was declared NED and it stayed that way for about 16 months.

Jason A.

I realized how tired and burnt out I was… I didn’t process anything that happened to me that year and a half until chemo was over.

Jason A.

Taking Time Off Work

After that scan, I took time off work to recover because I’d been working through everything. Once that scan came back clear, it was like the weight of the world was lifted.

I realized how tired and burnt out I was from the year and a half of appointments, treatments, procedures, and operations so I decided to take a couple of months off work.

During that time, we adopted a little girl. She was one. That was something we put on hold when I got this diagnosis. We were in the process of becoming adoptive parents when we found out so we had to put that on pause.

Two weeks after my last treatment, we got a call that we were matched with this one-year-old adorable little girl. Two weeks after that, she was living with us. I went from a year and a half of being a patient to a dad in two weeks. There was no time to process anything.

It was this amazing, life-changing thing after a year and a half of this difficult, life-changing thing. It was exactly what my wife and I, and our family needed to have something great happen and get back to living.

Taking Time to Process Everything

It was a new normal. The next six months were hard. It was tough emotionally because I was finally able to stop. I wasn’t in survival mode anymore. I knew I was okay. All my systems started to slow down. Then you realize what you’ve been through. I didn’t process anything that happened to me that year and a half until chemo was over. 

Everything surfaced and hit me like a freight train. I spent a lot of time working with a social worker and my psychologist. I did a lot of peer groups within the cancer support community to work through everything and figure out what my new normal is and who I am now.

Jason A.

Jason A.

Everything changed. I was a first responder before and I was always a big risk taker and helper. After this, I realized, all my priorities had changed. Your outlook on everything is different.

I had to give myself time to heal both physically and mentally but also to figure out who I was, what I was going to do, what I wanted my life to look like now, and what was the healthiest thing for me moving forward. Working through all of that and trying to navigate some of the chemo side effects took a good chunk of the next year.

I was getting scans every three months for the first year. Then I moved up to every six months. I had one six-month scan that was clean.

How could a reoccurrence happen when you’re feeling great?

Finding a Lung Nodule

In September 2023, on one of my surveillance scans, a lung nodule popped up. We went back and saw that it was on a scan a year ago. It was tiny and a lot of the time, stuff in the lung isn’t noted until it changes because a lot of us have stuff on our lungs that are absolutely nothing. It changed gradually over the past year.

It was a bit of a shock. I’ve been completely asymptomatic. I’ve been feeling pretty good. I think I’m in better shape and feeling better than I was before my diagnosis, which is awesome but also a little confusing. How could a reoccurrence happen when you’re feeling great?

I didn’t feel any different. I was feeling great. If it wasn’t for that scan, I wouldn’t have a clue anything was there. That thrust me back into patient mode quickly, which was challenging because I’ve spent the last almost two years trying to figure out how not to be a patient anymore and I was in a really good spot.

Jason A.

Jason A.

Discussing Treatment Options

Luckily, I had a lot of options. I had a whole bunch of tests done. It was an isolated incident and there was no spread anywhere else. Everything else is still great. 

After meeting with a thoracic surgeon, the first go-to will be surgery to take it out. I did a PET scan, which came back great. I had a brain MRI, which was clear. I did a CT scan, a cardiopulmonary test, EKG, and all the pre-surgery stuff.

Because of the location, even though it was a small 18 mm tumor, they were going to have to remove my whole lower lobe because it was quite central. They couldn’t do a wedge resection. They would have had to take too much out so it was safer to take the whole lobe.

From the time that lung nodule popped up on the scan, within a week, I had four procedures booked and done. I had a consult with a surgeon the following week.

Seeking a Second Opinion

Because of my age, my health, and because there was a low disease burden, I asked for a second opinion. I knew that there had to be a less invasive but as effective approach. I thought I was being pretty logical.

I talked to a couple of great people who are quite educated in the advocacy world and they guided me in the right direction about how to do that, what to do, and who to contact.

I ended up getting a second opinion from a highly regarded surgeon in Toronto out of Sunnybrook and he ended up being my thoracic surgeon’s mentor when he was in med school. Small world.

I pushed. If I need something, my doctors make it happen because if not, their phones are going to be ringing and I’m going to annoy everybody.

Jason A.

Jason A.

From the time that lung nodule popped up on the scan, within a week, I had four procedures booked and done. I had a consult with a surgeon the following week.

My oncologist is great. He goes to bat for me, which helped as well, but I was on the phone daily, calling the offices. “Do you have my file? Has it arrived yet? When’s my appointment? Book me in.”

My oncologist called me that week, saying, “Who are you calling? I’ve been getting messages about you all day and I don’t understand where these are coming from.” We had a good little chuckle.

What that ended up doing was getting my second opinion quickly and getting it moved to the tumor board the very next day.

Stereotactic Body Radiation Therapy

We ended up deciding to do SBRT as opposed to surgery. I had three 15-minute sessions in that area, which was done in November.

It’s a very specialized and precise radiation. As opposed to traditional radiation, which targets an area of the body and a whole bunch of tissue gets affected, they map out almost to the millimeter. The radiation impacts only the tumor and very minimal surrounding tissue around it.

Jason A.

Jason A.

Side Effects of SBRT

I had very little side effects. I had a little bit of fatigue immediately after each session, a little bit lethargic, but that’s it.

It’s quite amazing that 45 minutes of treatment could replace losing a whole lobe of your lung. They’re as effective but on opposite ends of the spectrum with invasiveness so I’m fortunate for that second opinion.

My surgical oncologist would have come to that anyway, but that second opinion sped the whole thing up.

My situation is very good. I know I’m fortunate. I’m right on the brink of being NED again and staying there for a long time.

Follow-up Protocol

Technically speaking, if the SBRT did what it was supposed to do, I am back at NED. There was another tiny nodule that popped up that they were watching, but it did not light up on my PET scan so they’re not sold that it’s anything at all.

They’re going to keep a close eye on it in the next set of scans to see if anything changes. If it does, my radiation oncologist has already told me that he will treat it with SBRT right away. If it does turn into something at some point, I have a plan. I’m good. I know that SBRT is highly effective and minimally invasive so I’m happy about that.

Jason A.

Jason A.

My next scans are in January 2024. Those are going to be big ones. Everybody gave me the holidays off. They said, “SBRT takes some time to work so let’s push the scans back a couple of weeks. Enjoy the holidays with your family. You don’t need test results hanging over your head. We’re going to scan in the second week of January and ensure that the SBRT did what it was supposed to do.”

Knock on wood, it’s shrunk, it’s dead, it’s stable, whatever they need to see. If it did grow at all, I do have the option of doing another round of SBRT on it.

My situation is very good. I know I’m fortunate. I’m right on the brink of being NED again and staying there for a long time, if not forever this time. I’m a little bit nervous about that appointment because I don’t know if my oncologist is going to suggest clean-up chemo to be sure.

My situation is fairly unique because it was one isolated met. We didn’t do a biopsy on it because I felt that the risks of that lung biopsy were not necessarily worth it, especially given that it lit up on the PET scan. The fact that it lit up on the PET scan was enough for me. I didn’t feel that the potential side effects and risk factors were worth it. My oncologist and my team agreed.

Jason A.

Jason A.

Technically speaking, they don’t know 100% if it’s a CRC met or if it was potentially a second primary cancer in the lung. My staging is not necessarily changing. They’re not rushing to jump on anything. It’s essentially a stage 3B with an unconfirmed met in the lung essentially. I’m in a weird gray zone, I guess you could say.

The way I see it is I can still be NED from my stage 3 colon cancer and have a stage 1 lung something and they blast it out with SBRT. Both of those have extremely high cure rates and success rates. The worst case is that it was a met. It was isolated, the rest of me is clear, they blasted that away.

Do your research. Talk to organizations. There are great organizations out there. Get a network built around you.

Words of Advice

Our systems are very different in the US and Canada. Second opinions and all that work very differently, but at the core of it, advocacy is advocacy.

The biggest lesson I’ve learned is you have to trust your doctors. They’re the pros. But you also have the right to question them in a polite, professional, appropriate way.

You’re allowed to ask questions. You’re allowed to ask them why they’re making the decisions they’re making and why not. You’re allowed to give them ideas.

Jason A.

Jason A.

Do your research. Talk to organizations. There are great organizations out there. Get a network built around you.

Don’t hesitate and don’t be scared to say you don’t understand something, don’t agree with something, you got an idea from somebody, or you heard of a study, new treatment, or what have you. Don’t think that bringing that to your team is going to hurt their feelings or insult anybody.

At the end of the day, it’s your body and it’s your outcome. Doctors are amazing, absolutely. I love my team. There’s a very mixed bag of oncologists and doctors. People have very different experiences. But at the end of the day, they are not the be-all and end-all.

They help you and quarterback you, but their word is not the final say and it’s not always the right one. I’ve learned that when you bring things to their attention, when you learn how to work with them and be part of your care, they take your opinions and some of your ideas and make things happen.

Be part of your care. When there are meetings and decisions to be made, be part of that. Be actively engaged and make your voice heard.

If they know you’re going to cause a ruckus, speak up, and stir up the pot essentially to get things done, they will work that much harder for you because they know you’re invested and that you’re not going to wait. If they lag or say no, you’re going to find a way. Don’t take no for an answer. Don’t be scared to question and ask why.

Jason A.

Jason A.

We cannot do this alone. Supporters and caregivers are often not talked about enough. They get as affected as we do. Maybe not in the same ways, but they experience this with us. When one of us has cancer, the whole family does. Don’t forget about those people. Everybody’s trying to help. Surround yourself with good.

There are a lot of amazing organizations out there. I used Young Adult Cancer Canada, Colorectal Cancer Canada, Man Up to Cancer, and CCRAN.

Surround yourself, educate yourself, and be knowledgeable. Don’t put your head in the sand and isolate because that’s not going to go well. Find your people and latch on to what helps. That community will help you get through this.

Be part of your care… Be actively engaged and make your voice heard.


Jason A. feature profile
Thank you for sharing your story, Jason!

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Categories
Cancers MPN myelofibrosis Patient Stories Stem cell transplant Treatments

Kristin’s Myelofibrosis Story

Kristin’s Myelofibrosis Story

Interviewed by: Alexis Moberger
Edited by: Katrina Villareal

Kristin D.

Kristin shares her experience of being diagnosed with myelofibrosis, a rare type of bone marrow cancer.

She was initially diagnosed with polycythemia vera (PV), a blood disorder wherein there is an increase in red blood cells. She would have phlebotomies done every three months as a treatment for about a year until she didn’t need to anymore.

Shortly after, a routine blood work showed very, very low platelets. After having a bone marrow biopsy done, she was referred to an oncologist.

The only treatment suggested was a stem cell transplant. Unable to match with a donor through Be The Match, she thankfully matched with her sister. She also shares how she dealt with her 25-year-old daughter’s Hodgkin lymphoma diagnosis.

Kristin shares her journey and the importance of finding positive people to surround you.

In addition to Kristin’s narrative, The Patient Story offers a diverse collection of myeloproliferative neoplasm (MPN) stories. These empowering stories provide real-life experiences, valuable insights, and perspectives on symptoms, diagnosis, and treatment options for cancer.


This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.


  • Name: Kristin D.
  • Diagnosis:

    • Myelofibrosis

  • Mutations:

    • JAK2

  • Initial Symptoms:

    • None; caught at routine blood work

  • Treatment:

    • Stem cell transplant

Kristin D.

Kristin D. timeline



Introduction

I’ve been a flight attendant since ‘98, which has always been my dream job. I grew up in Chicago and went to college at the University of Illinois.

I’ve lived in a lot of interesting places. My favorite place in the world is where I live now in Annapolis, Maryland. My husband lived here so I moved here. We bought a house in 1996 and had a great life.

At the end of 2021, I was told I had myelofibrosis. I didn’t have many options. The treatment for it was a stem cell transplant.

It’s a very rare blood disease. I’ve never heard about it and I don’t know anybody who has. Luckily, I had a sister who helped me navigate through the whole process.

Kristin D.

When I had routine blood work done, my platelets were very, very low so my general doctor wanted me to see an oncologist.

Kristin D.

Pre-diagnosis

Initial Symptoms

During my annual blood work, they said my red count was so high. They said, “Don’t worry about anything. It’s easy to treat with phlebotomies.” They said it was not that uncommon.

I would go to the blood center every three months and pump out a couple of pints of blood. They would discard it because it wasn’t good blood. It was painless. I didn’t feel different going in or coming out.

I did that for a year. One time, my red blood cell count was good enough that I didn’t need it. I thought that was odd but a good sign.

Shortly after, when I had routine blood work done, my platelets were very, very low so my general doctor wanted me to see an oncologist. He did a bone marrow biopsy and turned me over to the University of Maryland.

I felt great. I wasn’t fatigued. I played a lot of tennis and nothing.

The only symptom was I bruised easily. There were bruises on my hands, legs, and arms. I would wake up with itchy arms.

Kristin D.

I felt confident this wasn’t something I was going to die prematurely of because there was a treatment for it.

Kristin D.

Diagnosis

Getting the Diagnosis

Nobody in my family ever had something like this. They said it’s not genetic.

My oncologist at the University of Maryland is fantastic. He’s a real rose-colored glasses kind of guy and non-alarmist. He said there was no explanation. It wasn’t environmental, genetic, or my lifestyle.

Before treatment, they thought it was related to working at altitude all the time, but they ruled that out.

Reaction to the Diagnosis

It was frightening, but I felt confident this wasn’t something I was going to die prematurely of because there was a treatment for it.

My sister’s a nurse. She’s my right hand when it comes to looking at my test results. She’s my interpreter because a lot of that’s so foreign to me. She was also my donor.

Getting a Second Opinion

I went for a second opinion at Hopkins. The doctor recommended a book about myelofibrosis, but I could never get my hands on it.

When people say, “What were you out with?” I say it’s a kind of blood disorder. I don’t say myelofibrosis because nobody knows what it is.

Kristin D.

There was nothing else I could do, but it was up to me as to when to do it.

Kristin D.

Treatment

Discussing the Treatment Plan

Other than the transplant, there was no other treatment suggested. It was the only solution. The only option I had was when to do it.

He said that since I felt so good, I could wait a year or two or three. He said it’s better to do it when you’re young. The way I am is I want to get it done.

He said, “You’re going to need a donor. You’re going to need to take a year off work,” and that shocked me. It turned out to be a year and a half.

I block out bad stuff and bad times, but I vaguely remember there was no other option than the transplant.

Bone Marrow Biopsy

They looked at my counts and my platelet counts were getting gradually worse. They said the next step was a biopsy, which was pretty much a no-brainer.

They got the diagnosis from the bone marrow biopsies. I’ve had probably at least 10 of them in my life.

Kristin D.

Kristin D.

Preparing for the Bone Marrow Transplant

Luckily, I have two children and that’s a good thing because they said the age of the donor is important to its success.

My son was living in Maui so he wasn’t an option. I didn’t want him to interrupt his life. My daughter stepped up to the plate and said she would do it. She started going for all the visits and tests.

I didn’t match with anyone in Be The Match. They said I was 1 in 1,000,000. My sister was a match so even though she was 61 at the time, there were advantages because we were full siblings.

I was in the hospital for five weeks. It was like being in a bubble.

Going Through Transplant

I went through radiation for two days for 15 minutes on each side.

I never knew how chemo worked. You get a port and it goes right in. You don’t feel a thing. They called it the eat, drink, and be merry days.

After the chemo went in, I felt really good. I couldn’t leave the floor so I would go on the treadmill.

My nurses predicted that by around day 10, I would feel sick and wouldn’t have any energy or appetite. They were right. Everything people say about chemo is true.

I had diarrhea pretty much for two months. It was a slow healing.

In my ward at the University of Maryland, I was the youngest person there. I was amazed that older bodies could go through that.

Kristin D.

Kristin D.

Recovering from Transplant

I was in the hospital for five weeks. It was like being in a bubble. You think it’s relaxing because you can read or watch a lot of TV or movies, but they’re constantly checking on you. They get your vitals every three hours. But I got a lot of support from them. I had my designated visitors so the five weeks went by fast.

You need a caregiver. You need somebody to live with you in case you fall, to check your temperature, and to monitor you. My best friend from Indiana gave up three months of her life and came to live with me.

She was the perfect person for it. She took notes and took charge of my meds. She went with me to every appointment. She’s an incredible person.

If this comes back, when my numbers start to falter, I will do it again in a second.

Transplant Didn’t Work As Planned

When they found out I accepted only 2% of my sister’s cells, they looked at it as somewhat of a failure. I was so mad when a nurse said my transplant was a failure. I asked Dr. Rapoport, “Why did she call it a failure?” He said, “It was a bad choice of words. It didn’t work as planned. You still succeeded in getting rid of the JAK2 mutation.”

I was so upset about that because it meant my immune system was weak.

I was on VALTREX (valacyclovir). When my refill came up, I asked Dr. Rapoport, “Do I still need to be on this?” He said no. I’m in the process of getting vaccinated again.

They offered clinical trials to everybody on the floor. It required coming back to the hospital. I live an hour away and I didn’t want to do it.

Kristin D.

Kristin D.

Danielle is different than me. She investigated and talked to people who had been through it. She met a few people online who had myelofibrosis. She wanted to know where you were at this point, this point, and this point. I wanted to dive in and then forget about it.

Getting Another Transplant

They want to see me every four months. If this comes back, when my numbers start to falter, I will do it again in a second.

My best friend came with me to one of my appointments and said, “I don’t understand what’s going on with Kristin. Is she cancer-free?” A different said, “She’s never going to be cancer-free. It’s just the way it works.”

Hopkins had a way of doing things that I liked and didn’t like, but I would probably do it again there.

As far as finding another donor, I would probably go with my son because he’s young. It worked out well for my daughter and I’m sure he would do it. My sister’s 63 and if it comes back, she might be older.

My numbers have been stable. They’re not off-the-charts great, but they’re not getting worse.

Life Post-Transplant

I wasn’t allowed to vacuum. I wasn’t allowed to go anywhere without a mask. I wasn’t allowed in restaurants. I wasn’t allowed to eat anything that other people brought in.

They made me paranoid about germs, going outside, and eating anything that hadn’t been washed. No sushi, nothing undercooked, and no lunch meats. They put the fear in me. If I got sick with pneumonia or COVID, it could have been really bad because I didn’t have anything to fight that off, but I didn’t.

Follow-up

When I go to the doctor, I have a little fear, but Dr. Rapoport emphasizes that my numbers have been stable. They’re not off-the-charts great, but they’re not getting worse. He’s a great guy to deal with because he always looks on the bright side.

Kristin D.

When she said, ‘I have a tumor in my chest. It’s big and it’s near my heart,’ we started crying.

Kristin D.

Going Through Cancer with Her Daughter

Even though she’s got a wonderful guy, a mother’s instinct is to take care of her daughter, go to her treatments, and baby her and I couldn’t at those stages.

We all got through it. I thought she was going to have no energy and be chronically sick to her stomach and she didn’t. She didn’t feel great, but she was strong throughout it while I could barely get off the couch or go up and down the stairs. I don’t know if it was her age or if they did something differently with her.

She started going through all the tests that a donor needed to go through. They were confident she’d be great because she’s healthy, too.

It was Friday afternoon when she had her chest X-ray done. They took her in after the results came out and the doctor said, “You have a tumor,” and it was pretty sizable.

She called me as we were taxiing out. I wanted to know what was going on, but she said, “I’ll talk to you when you come back Sunday,” because she knew I would probably break down.

I thought she was going to tell me she couldn’t be my donor because we didn’t match. When she said, “I have a tumor in my chest. It’s big and it’s near my heart,” we started crying and saying, “This doesn’t make any sense.”

She went through the PET scan and the biopsy of the tumor. We clung on to the hope it would be benign and it wasn’t.

My daughter, who went to Hopkins, didn’t have it affect her as badly. They put her on chemo and she handled it well. She rang the bell and had a cancer-free celebration.

Kristin D.

Kristin D.

Four months after she stopped chemo, they found a lymph node. They called it hot. It showed up red on the PET scan. She was called refractory because she didn’t respond to chemo.

That was probably the worst part because I thought she was headed towards what I went through, which was hard. She’s 25. She’s supposed to be doing so many other things.

I wanted them to move in with me after she got out of the hospital and they said, “No. We’re adults. We’re going to figure this out our way.” I respect them. They didn’t need me as much as I wanted her to, but that’s a good thing.

She and her boyfriend have a great relationship. They laugh, enjoy themselves, and go for walks. They navigated their way through it. Now we’re in a state of relief. They have a great future ahead of them.

Words of Advice

I rave about Dr. Rapoport because he was positive, but there’s a lot of negativity.

You have to rely on other people to keep your spirits up. Take in all the positives. I had people come over and do puzzles with me. We’d watch Ted Lasso and I’d eat a lot of ice cream. To be without anybody that loved you or cared for you would be dark.

When I was in New York and started running a fever, I called the University of Maryland and said, “Can I come in tomorrow? Because I’m running a fever. I don’t feel that bad. I’m just running a fever and I know you don’t like that.” She said, “Get to an emergency room right now.”

I said, “Why? Why can’t I see you at eight tomorrow morning? I’ll catch the next flight.” She said, “Because the infection could go into your bloodstream.” She said this was an emergency.

I went to the emergency room and, as you know in New York, that took about six hours. They diagnosed me with pneumonia. I went on medication and got over it in a couple of weeks.

You deal with fatalistic people who are the glass is half empty. Find a positive person who points out the good things.

Kristin D.


Kristin D.
Thank you for sharing your story, Kristin!

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Ruth R. Diagnosis: Myeloproliferative Neoplasms (MPN) Treatment: Chemotherapy, Bone marrow biopsy, clinical trial
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Categories
Adriamycin (doxorubicin) BRCA1 Breast Cancer Carboplatin Chemotherapy Cytoxan (cyclophosphamide) Hysterectomy (radical) Mastectomy Patient Stories Radiation Therapy Surgery Taxol (paclitaxel) Treatments triple negative (TNBC)

Chance’s Stage 2 Triple-Negative Breast Cancer Story

Chance’s Stage 2 Triple-Negative Breast Cancer Story

Interviewed by: Alexis Moberger
Edited by: Katrina Villareal

Chance, who has a family history of cancer and tested positive for the BRCA1 gene mutation, was diagnosed with stage 2 triple-negative breast cancer at 24.

She discovered a lump in her chest during a beach trip. Despite having no other symptoms, she acted promptly and sought medical attention. After various tests, she received the official diagnosis of triple-negative breast cancer, the most aggressive form of breast cancer with limited treatment options.

She navigated chemotherapy, facing severe side effects like nausea, fatigue, and hair loss, and encountered unexpected complications while healing from her double mastectomy. Radiation therapy also presented difficulties, preventing her from undergoing breast reconstruction.

Despite the challenging journey, Chance emphasizes her gratitude for being alive. She highlights the importance of making choices that benefit one’s well-being and encouraging openness with loved ones for support.

In addition to Chance’s narrative, The Patient Story offers a diverse collection of breast cancer stories. These empowering stories provide real-life experiences, valuable insights, and perspectives on symptoms, diagnosis, and treatment options for cancer.


This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.


  • Name: Chance O.
  • Diagnosis:

    • Triple-negative breast cancer (TNBC)

  • Staging:

    • 2

  • Initial Symptoms:

    • Lump in breast

  • Treatment:

    • Chemotherapy: doxorubicin, cyclophosphamide, paclitaxel, carboplatin and olaparib
    • Surgery: double mastectomy, radical hysterectomy (preventive)
    • Radiation

Chance O.



Introduction

I’m 27 years old and work full-time as a social worker in foster care. I’m the regional director for Louisiana and South Carolina. I love my job. I’ve been working in foster care since I graduated college and I don’t see myself doing anything else.

When I’m not working, I’m outside. I don’t care what the temperature is or what the conditions are. I’m barefoot if I can be and if it’s safe to do so, which my friends think is crazy.

I rock climb and mountain bike a lot. I go hiking. I like lying in the grass and looking at the sky.

I have a dog, a five-year-old mutt who’s the best. I’ve been in a relationship for three years. I started three months before I was diagnosed; talk about diving right into a relationship. I travel full-time with my partner. She’s a respiratory therapist so we go wherever her work is and I work from home full-time.

Chance O.

I looked down at my chest hesitantly and could see a lump sticking out of my chest. It felt like it happened overnight, which is so cliché.

Chance O.

Pre-diagnosis

Finding a Lump

I was 24 at the time with a very extensive family history of cancers. I tested positive for the BRCA1 genetic mutation years prior so I was hyper vigilant as is. I was getting scans and tests done every six months preventatively.

In January 2021, I got my MRI and everything looked great. In February, I was in Florida, having a great time. I was lying on the beach and as I went to flip over to tan the other side, I felt a sharp, surface-level pain in my chest. I thought I laid wrong or laid on a seashell or something so I went about my business. It happened again so I lifted my towel to check if something was poking me and there was nothing there.

I looked down at my chest hesitantly and could see a lump sticking out of my chest. It felt like it happened overnight, which is so cliché.

Other than that, I had no symptoms. Sometimes people look back and say, “Oh, now that I think about it, maybe this and that.” I had nothing else.

The lump was big enough for me to know that it wasn’t a cyst, a bump, or a bruise. The best way I can describe what I saw was a lot of defined edges. It was the strangest thing I’ve ever seen on my body.

Because of my family history and my BRCA1 genetic mutation, in my gut, I immediately knew. I didn’t panic. I wasn’t in denial. I knew I needed to do something about it.

Chance O.

My nurse practitioner took me seriously. She said, ‘I’m going to get you scheduled for an ultrasound. Let’s rule out the worst-case scenario.’

Chance O.

Appointment with Nurse Practitioner

I didn’t tell anybody besides the family I was with on that trip. I handled it in private for a little bit.

I called my nurse practitioner and said, “I want you to look at this. I don’t think it’s anything, but let’s take a peek.” We scheduled an appointment two weeks after I found it. Thankfully, she took me seriously and said, “We’ve got to get this looked at. It could be a cyst, but let’s double-check.” From there, I went about all of the testing and imaging that would take what felt like forever after that.

I feel like testing for breast cancer is different for everyone and, honestly, I’m going to go out and say it’s different depending on where you live and who your doctors are. Unfortunately, not everyone has access to the same scans and imaging.

My nurse practitioner took me seriously. She said, “I’m going to get you scheduled for an ultrasound. Let’s rule out the worst-case scenario.”

Testing for Breast Cancer

I went to the same imaging center where I get my scans every six months so they knew me and were familiar with my history. Usually, when I would get an ultrasound, they say, “Have a great day! We’ll see you in six months,” or, “Hey, we want to take a peek at this quickly.”

It was significantly different this time. It felt like I was the only one in the facility. It went silent. After my ultrasound, they immediately took me back for a mammogram. Then after, they immediately took me back for an MRI without even waiting for insurance approval. They said, “We’ll figure it out later,” which I thought was crazy.

I had all of those tests in one day, which is not common. You usually go about a week between each one. After I had all of those initial imaging done, three days later, I was lying on a table getting a biopsy. It’s not common for everything to happen that quickly so in my gut, I knew something wasn’t right.

Chance O.

I always thought that breast cancer is the most treatable cancer among women… I didn’t realize that there were so many subtypes of breast cancer and I got the worst one.

Chance O.

Diagnosis

Getting the Official Diagnosis

I had the biopsy on March 10, 2021. Five days later, on March 15, 2021, at 2:21 p.m. — I will never forget that time — while sitting in my grandparents’ living room, they called and said, “I have good news and bad news.” I said, “There’s no good news. What’s the bad news?” They told me I was diagnosed with stage 2 triple-negative breast cancer

At 24, and to date still, I am their youngest patient ever who’s been diagnosed with triple-negative. Now, there are people younger than me who have been diagnosed, but in my specific city, I’m still the youngest one that they’ve seen.

Learning About TNBC

I didn’t know anything about triple-negative breast cancer. As I was growing up, with my mom and her sisters having cancer, to me, cancer is cancer. Breast cancer is breast cancer. You either have breast cancer or you don’t. That’s the way that I approached it up until it happened to me.

I thought, Oh, triple negative. That’s amazing, right? Three negatives. We want that. We want negatives. I was then informed that triple-negative breast cancer is the most aggressive form of breast cancer with the least amount of treatment options. That’s the moment when I thought, Okay. This is real. My life is on the line here.

I was naive. I always thought that breast cancer is the most treatable cancer among women and all these other things you see online. I didn’t realize that there were so many subtypes of breast cancer and I got the worst one.

Chance O.

My breast surgeon sat with me for three hours and went into detail about everything I needed to know about triple-negative breast cancer.

Chance O.

I owe learning about triple-negative breast cancer to social media and my medical team. I say social media and not Google. If you’re newly diagnosed, please stay off of Google. I went straight to Google and I saw crazy stuff no one wants to read.

I turned to social media and found the Triple Negative Breast Cancer Foundation. I dove in head first and connected with a lot of people. I connected with Kelly Thomas instantly and she’s been like my big cancer sis. Five years out is the goal we want to reach. She and the whole community have been informative.

The Triple Negative Breast Cancer Foundation has great resources that I’ve utilized to learn about triple-negative breast cancer. At the end of the day, if I have a question, I go to my doctor first before anything else and then reach out if I’m unable to get the answers that I’m looking for.

Treatment

Discussing the Treatment Plan

I went in naive. I thought, Oh, it’s a tumor. You can see it. Just cut it out, right? No, not at all.

My very first appointment after being diagnosed was with an angel in human form, who is also my breast surgeon. She is the best thing that happened to me through all of this. I walked into her office scared and she sat with me for three hours and went into detail about everything I needed to know about triple-negative breast cancer. She told me I was going to need chemotherapy first and then she would do the surgery.

Then I went to my oncologist and met with the nurse practitioner. I got “chemo education” where you learn about all of the side effects, the what-could-happens, and the what-might-happens.

Chance O.

I feel very thankful for a team that cares about my life as much as I do.

Chance O.

Chemotherapy

The Tuesday after my oncologist appointment, I started my first round of chemotherapy. Thankfully, they acted very quickly with me. From the date of diagnosis to my first chemotherapy was 16 days, which is very, very uncommon. I feel very thankful for a team that cares about my life as much as I do. I have been so privileged with my medical team.

With chemotherapy, a lot of it was based on some preliminary tests. You have to get an echo to make sure your heart is strong enough. I also had a full body scan to make sure the cancer wasn’t anywhere else. I had a scan of my brain to make sure it wasn’t there. That was going to determine my chemotherapy approach.

Once they found out there was no lymph node involvement and nothing involved anywhere else, we decided to do what was considered the gold standard of triple-negative breast cancer at the time. Saying at the time makes me feel like it was so long ago but that is no longer the standard.

My regimen was four rounds of CYTOXAN (cyclophosphamide) and ADRIAMYCIN (doxorubicin), which you may hear as the Red Devil in the cancer community. I don’t refer to it as that, but some people do. I did that every other week and I thought that was going to be the end of me. It was hard on me. Thankfully, I made it through and this is when it starts to get a little tricky.

Side Effects of Chemotherapy

After those four rounds, I was supposed to move on to 12 rounds of TAXOL (paclitaxel) once a week. About four weeks in, while having an infusion, my heart started doing some crazy stuff. I thought it was a panic attack. My vitals showed otherwise and they immediately had to stop treatment.

My port sits on either side of the chest and goes into the aorta. My port catheter had migrated into my tricuspid valve. If you know anything about hearts, nothing should be in there. That’s what triggered the Afib (atrial fibrillation). But they thought it was the chemotherapy so they stopped the Taxol and switched me to carboplatin. I did that every three weeks for four weeks.

My plan didn’t go as planned, but I was still able to get a substantial amount of chemotherapy within about 16 weeks. Once the experience happened with Taxol, I had to get my port removed.

I was able to finish chemotherapy. Unfortunately, I had to have the rest of my chemo through my veins so I had to get poked every single time.

Chance O.

Towards the end of that round of chemo, I was at a point where I had to crawl to the bathroom because I had nothing left to give.

Chance O.

I want to make it very clear that these side effects are my side effects and they may not be your side effects. Every experience is significantly different. I, unfortunately, felt like I had the worst experience possible, at least with the first four rounds of chemotherapy. Adriamycin and Cytoxan is the most lethal form of chemotherapy and I felt every sense of that.

I had extreme nausea, constipation, bone pain, fatigue, low blood pressure, dizziness, and vomiting. It honestly felt like the worst hangover of your life for eight weeks straight. There were very few things that could resolve it. I couldn’t walk. I was very weak and frail.

I’ll never forget one of the most vulnerable moments for me and it makes me emotional to this day. Towards the end of that round of chemo, I was at a point where I had to crawl to the bathroom because I had nothing left to give. It broke me down.

Some things helped, thankfully. During my last infusion, I figured out to receive a different form of nausea medication and have more fluids at the time of infusion. Taking an allergy pill also helped with bone pain.

Baths helped. Anyone who knows me is going to laugh when I mention taking baths. I probably took 5 to 7 baths a day. The warmth on my body was the only thing that made me feel like I could survive.

Honestly, sleep helped. There were days when I would take a Benadryl or my sleeping medication in the morning because being asleep felt so much better than having to be awake and endure what I was enduring.

Chance O.

I rang the chemotherapy bell on August 8, 2021, and I thought the hardest part was behind me.

Chance O.

The second cycle of chemotherapies was night and day. I was able to work full-time. My hair started growing back. I was dizzy and I didn’t feel great, but for having chemicals pumped into me, I felt pretty good so that was a huge relief.

I didn’t have to change anything. I didn’t have to seek out any additional measures to feel comfortable and maybe it’s because I was comparing it to the first round. The second round felt like a breeze.

I didn’t look great. I was incredibly skinny. I was very pale and had big black circles around my eyes. I was bald pretty much, but I felt a lot better than I did initially.

I rang the chemotherapy bell on August 8, 2021, and I thought the hardest part was behind me. That’s what you see online. Chemotherapy is the hardest and if you can get through that, you can get through anything. I wish that’s how my story went.

Surgery

Double Mastectomy

After chemotherapy, I went in for surgery on August 30, 2021. The plan was a double mastectomy, lymph node dissection for testing purposes, and expanders to stretch out my skin to eventually get implants.

All went to plan. Everything was looking great. I had to stay in the hospital overnight. 

Complications from Surgery

When I woke up the second day, my chest was black. My skin was black. It was actively dying.

My team came in and explained that there was a dye that was used called methylene blue dye, which allows your surgeon to trace the cancer or for testing purposes. What ended up happening was that I was allergic to it.

We had to take the expanders out. On September 4th, I went back in for surgery. I was flat, which I was okay with. I was thinking I’ll get my expanders eventually. We needed to let my chest heal. It was black. There was no guarantee that my skin was going to recover. Thankfully, it did.

Chance O.

I feel comfortable in my body. It doesn’t look the way that I imagined it would at 27 years old, but I’m alive.

Chance O.

On September 14th, I had to have a third surgery because I developed a hematoma, which is uncommon to develop 10 days later. It was big enough that it looked like I had breast tissue.

This is a testament to my medical team. I called my breast surgeon in the middle of the day, not thinking anything would happen. At 10 o’clock that night, a bunch of people volunteered to come in and do the surgery, solely because they knew I was uncomfortable.

It wasn’t an emergency and I wasn’t in medical distress. I overemphasized how uncomfortable it was and that was enough for them to rally the troops and do my surgery that night, which felt incredible. Again, I felt privileged. I thought, Okay, the worst is over. I’m good. It’s going to heal. I’ll get my expanders.

Where my skin turned black, a tiny little piece of my expander was able to break through the skin and that part of my chest never recovered. That was a long, drawn-out process of staples, stitches, glue, a wound VAC, and all of these other things. It eventually closed.

By the time it closed, it was time for radiation. We’re thinking we’ll do radiation and do the reconstruction after.

Radiation

Radiation didn’t go to plan either. It was really hard on me. Radiation can be different for everyone, but in the context of my surgery, the radiation affected my skin. The scar that we finally got healed broke open again. There were a bunch of delays and a bunch of little things that happened in between.

All that to say, I never got reconstruction because my skin was not in a position to do so. It may be in a few years, but to be quite honest with you, I’m very happy with what I have now.

Even if my surgeon called me and said, “You can get implants right now,” I would say no. I feel comfortable in my body. It doesn’t look the way that I imagined it would at 27 years old, but I’m alive, and being alive outweighs anything that my body could look like. It was a crazy experience.

Preventative Surgery

Total Hysterectomy

On October 12, 2021, I had a total hysterectomy. My mother passed away from ovarian cancer in 2011 so it was an option given to me as a preventative measure. Again, that’s a conversation that individuals need to have with their medical team, but that was a decision that I made for myself.

Thankfully, that healing was textbook perfect. I handled that very well and recovered very well.

Chance O.

There are plenty of babies in this world that need me and I need them. I just don’t know them yet.

Chance O.

Fertility Preservation Before Cancer Treatment

Fertility was one of the first conversations I had with my medical oncologist. Being so young, he said, “We need to get you started on fertility treatments. You’re so young,” and I stopped him mid-conversation. I said, “I don’t want to proceed with that.”

He said, “This is a lot. Go home. Think about it.” He said this all out of kindness and stepped into dad mode. “Sleep on it. We can talk about it. We can educate you on it.”

There’s nothing to think about. Ever since my mom died, since I found out that I was BRCA1 positive, and since I’ve worked in foster care, I’ve never wanted to have children of my own. There are plenty of babies in this world that need me and I need them. I just don’t know them yet. It’s never crossed my mind.

I will say though, in a moment of vulnerability, do I grieve the loss of having my own children? Absolutely. But I know what it’s like to lose your mom in childhood and I’m going to do everything I can to prevent my children from enduring that same thing. If that means not having them biologically, then count me in.

Follow-up Protocol

November 2023 puts me at almost three years since diagnosis, which is crazy to me. I see my medical oncologist every 3 to 4 months, which seems to be on par with the community. I don’t get any scans unless there’s a reason to do so.

I get a Signatera test. It’s a very new development. It’s a cool test. They take your initial tumor DNA, draw your blood, and match it to your current blood DNA to see if there’s any circulating tumor DNA in your blood.

I’m not convinced that I trust it 1,000%, but for me, the reason we do that is that my tumor markers are not reliable. When I was diagnosed with cancer, it was a 9 and it’s been 9 ever since, even though I currently don’t have cancer so it doesn’t provide us accurate information to use it for determining reoccurrence.

I get a bone density test every two years because I had a hysterectomy and estrogen is what fuels healthy bones. I still see my gynecologist once a year to make sure that the fluid in that area is free of cancer.

I see my breast surgeon every six months or once a year to check on scarring. She does an exam and checks my chest wall, my armpits, and my neck. She is a true angel.

I see my team often and I plan to do so until I hit the golden five-year mark in the triple-negative breast cancer community.

Chance O.

Not having my mom with me to experience all of this was hard, but I was surrounded by my grandparents, my partner, really good friends, and my family. I felt very, very privileged to be loved so well.

Chance O.

Words of Advice

My biggest piece of encouragement is something that I’ve had to learn and now learning: there’s no wrong choice in your treatment. Sometimes you think of making the right or the wrong choice. I want to encourage you to understand that there’s no wrong choice. You may have to make a different choice if you don’t like the choice that you made at first.

I don’t like using the words right and wrong. There’s so much pressure with that, especially when it comes to your life. Instead, I encourage you to say, “What choice can I make right now that benefits me in this moment?” You have the autonomy and the privilege to make another choice if that choice doesn’t work out.

I was surrounded by amazing people. Not having my mom with me to experience all of this was hard, but I was surrounded by my grandparents, my partner, really good friends, and my family. I felt very, very privileged to be loved so well.

As time passed and as we had more open conversations about my journey, I asked them if there was something I could have done differently.

The only thing they said was that they wished I didn’t try to save them while I was saving myself. I withheld a lot of hurt, pain, and diagnosis information from them because I wanted to keep them as blind as possible to what was going on.

It wasn’t lost on me that that was just as hard for them. They watched my mom die and I’m sure that it was very triggering for them. I look just like my mom. I talk and act like my mom. I’m sure there were a lot of moments where it was like, “Oh no, is this going to repeat itself?”

If you’re newly diagnosed or in the thick of it, I encourage you to let your people in. They want to hurt with you. They want to be scared with you. I promise you, it’s way less scary if you allow people to be scared with you.

Chance O.


Chance O. feature profile
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Melissa H., Stage 2B, Triple Negative



Cancer details: Triple negative doesn’t have any receptors commonly found in breast cancer making it harder to treat
1st Symptoms: Lump in left breast
Treatment: Mastectomy, chemotherapy, 2nd mastectomy
Genoa

Genoa M., IDC, Stage 3, HER2+



Cancer details: HER2-positive tends to be more aggressive than HER2-negative cases
1st Symptoms: Nausea
Treatment: Chemotherapy, radiation

Andrea A., IDC, Stage 2B/3, ER+



Cancer details: Found cancer while pregnant
1st Symptoms: Divot in breast
Treatment: Chemotherapy, radiation, surgery

Stephanie J., Stage 3, Triple Negative, BRCA1+



Cancer details: Triple negative doesn’t have any receptors commonly found in breast cancer
1st Symptoms: Lump in left breast
Treatment: Chemotherapy, surgery

Renee N., IDC, Stage 3, HER2+



Cancer details: IDC is most common kind of breast cancer.
1st Symptoms: Lump in breast
Treatment: chemotherapy, bilateral mastectomy, radiation

Shari S., Stage 4, Metastatic, Triple Positive



Cancer details: Triple positive = positive for HER2, estrogen receptor (ER), progesterone receptor (PR)
1st Symptoms: Lump in breast
Treatment: Surgery, chemotherapy, radiation
Erin

Erin C., IDC, Stage 2B/4, Metastatic, Triple Negative



Cancer details: Triple negative doesn’t have any receptors commonly found in breast cancer making it harder to treat
1st Symptoms: Pain in breast
Treatment: Surgery, chemotherapy, radiation
Margaret A. feature

Margaret A., IDC & DCIS, Stage 2B



Cancer details: IDC is most common kind of breast cancer. DCIS means cancer has not spread into surrounding breast tissue
1st Symptoms: Pain in left breast, left nipple inverting
Treatment: Double mastectomy, chemo (AC-T), Radiation

Abigail J., Stage 4, Metastatic



Cancer Details: HER2-low, node negative, PIK3CA mutation



1st Symptoms: Back and leg pain, lump in breast



Treatment: Surgery, chemotherapy, radiation, CDK4/6 inhibitors
Bethany W. feature profile

Bethany W., Stage 2, ER+



Symptoms: Lump in breast and armpit
Treatment: Chemotherapy, double mastectomy, radiation
Bethany W. feature profile

Bethany W., Stage 4 Metastatic



Symptoms: Lower back pain
Treatment: Chemotherapy, radiation, maintenance treatment
Lainie J.

Lainie J., IDC, Stage 2, HER2+



Symptoms: Lump in breast
Treatment: Chemotherapy, double mastectomy, radiation
Cynthia is the founder of Learn Look Locate, a breast cancer community
Cynthia J., IDC, Stage 2B Diagnosis: Stage 2B Breast Cancer Symptoms: Architectural distortion on mammogram Treatment: Double mastectomy, radiation
Nikki M., Stage 3 HER2+ Inflammatory Diagnosis: Stage 3 Inflammatory Breast Cancer Symptoms: Centralized pain around the nipple, inverted nipple, swollen breast, differences in nipple color, warm-feeling breast Treatment: Chemotherapy, single mastectomy, radiotherapy

Margaret A. feature

Margaret A., IDC & DCIS, Stage 2B



Cancer details: IDC is most common kind of breast cancer. DCIS means cancer has not spread into surrounding breast tissue
1st Symptoms: Pain in left breast, left nipple inverting
Treatment: Double mastectomy, chemo (AC-T), Radiation

Alison R., Partially Differentiated DCIS, Stage 4 Metastatic



Cancer details: Triple positive = positive for HER2, estrogen receptor (ER), progesterone receptor (PR)
1st Symptoms: Lump in underarm/breast
Treatment: Chemotherapy, surgery, radiation, targeted therapy

Natalie
Natalie W., DCIS, Stage 0, ER+; Paget’s Disease



Cancer Details: Only 1-4% of breast cancer cases also includes Paget’s
1st Symptoms: 2cm lump found in right breast
Treatment: Lumpectomy, double subcutaneous mastectomy, hormone therapy
Margaret A. feature

Margaret A., IDC & DCIS, Stage 2B



Cancer details: IDC is most common kind of breast cancer. DCIS means cancer has not spread into surrounding breast tissue
1st Symptoms: Pain in left breast, left nipple inverting
Treatment: Double mastectomy, chemo (AC-T), Radiation
Tina C., DCIS & LCIS, Stage 3A, ER+



Cancer details: Both ductal and lobular, estrogen receptor positive. Different than breast cancer Tina’s mom was diagnosed w/ twice.
1st Symptoms: Sunken in nipple of right breast
Treatment: Double mastectomy, chemotherapy, radiation, hormone therapy

Cat L., IDC & DCIS, Stage 2B



Cancer details: IDC is most common kind of breast cancer. DCIS means cancer has not spread into surrounding breast tissue
1st Symptoms: Pain in left breast radiating from lump
Treatment: Bilateral mastectomy, chemotherapy


Categories
MPN myelofibrosis Patient Stories Treatments

Joseph’s Myelofibrosis Story

Joseph’s Myelofibrosis Story

Interviewed by: Alexis Moberger
Edited by: Katrina Villareal

Joseph, a 76-year-old man who maintains an active lifestyle, shares his journey with myelofibrosis, a rare bone marrow cancer.

Initially unaware of his condition, his low hemoglobin levels prompted a visit to a hematologist and a gastroenterologist, which eventually led to a hospital admission when a nurse noticed that he was symptomatic.

After his oncologist diagnosed him with myelofibrosis, he found out that there was no cure. Hesitant about undergoing a transplant, Joseph explored alternative options, eventually joining a clinical trial at Mount Sinai. The trial, which involved the drug pacritinib, became a vital part of his treatment plan.

Despite initial challenges, Joseph’s health started to improve. His hemoglobin levels stabilized and he found success on the clinical trial. The treatment being studied was pacritinib, later known as VONJO, which later received FDA approval.

Throughout his journey, Joseph experienced changes in spleen size and fluctuations in appetite. Despite these challenges, his hemoglobin and platelet levels improved significantly.

Joseph emphasizes the importance of seeking specialized medical care, encouraging others to research and choose healthcare providers wisely, and stressing the importance of self-advocacy and education in navigating medical challenges.

In addition to Joseph’s narrative, The Patient Story offers a diverse collection of myeloproliferative neoplasm (MPN) stories. These empowering stories provide real-life experiences, valuable insights, and perspectives on symptoms, diagnosis, and treatment options for cancer.


CTI BioPharma logo

Thank you to CTI for its support of our patient education program! The Patient Story retains full editorial control over all content.

This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider for treatment decisions.


  • Name: Joseph C.
  • Diagnosis:

    • Myelofibrosis

  • Initial Symptoms:

    • None; caught at routine blood work

  • Treatment:

    • Clinical trial: VONJO (pacritinib)

Joseph C.



Introduction

I’m 76 years old. I go to the gym seven days a week. I ride a bicycle for two hours every day then I come home.

I’ve always run and walked my whole life. I’ve been in sports for decades. I’ve played football, basketball, tennis, and ran track. I do all of these things to keep myself active.

Joseph C.

Joseph C.

Pre-diagnosis

Initial Symptoms

When we came back from a vacation, I got a call from my primary physician who said my hemoglobin was 6. I didn’t know what that meant. He told me to make an appointment with a hematologist and go to a gastroenterologist to see if I could get a colonoscopy.

At the appointment with the gastroenterologist, the nurse looked at me and said, “You look symptomatic. I think you should go to the hospital.”

I went home, picked up my wife, and went to the hospital. By the time I got admitted and got into a bed, my hemoglobin was 5. They gave me a couple of pints of blood and I stayed overnight.

Diagnosis

Getting the Official Diagnosis

I met Dr. Samir Patel of New York Cancer & Blood Specialists. He told me I had myelofibrosis. When I went home, I looked it up and found out that there was no cure.

When I went back to see him, he said, “Make an appointment to go to Mount Sinai Hospital in Manhattan and talk to a surgeon regarding a transplant.”

Joseph C.

They told me I was in good enough shape to do the transplant, but I didn’t want to put my family through all of that.

Joseph C.

Treatment

Discussing Treatment Options

I shied away from a transplant. I knew a little bit about it so it wasn’t something I wanted to entertain. I asked him, “What’s the alternative?” He said, “Another part of the team has a trial program that you can try.”

I told myself that the trial program is the nucleus. I’m going to roll the dice and see what happens. I don’t know what the answer will be.

They told me I was in good enough shape to do the transplant, but I didn’t want to put my family through all of that.

We were going to Mount Sinai once every three months and it was a headache. If we had to do that 3 or 4 times a week, I don’t know what would’ve happened. It’s too much pressure.

I know from my experience that a trial is what it says, it’s a trial. They don’t know what the answer is going to be.

Enrolling in a Clinical Trial

I saw Dr. John Mascarenhas, who introduced me to the trial. He told me that this is about the third trial they’ve had so far and 70% of the people do well. I didn’t ask how the other 30% do, but I said, “I’m going to try it.”

He asked me a bunch of questions, which was always interesting because they asked me these questions all the time. Do you have bone pain? Do you have sweats? Do you have this? Do you have that? I said, “I don’t have anything. If you didn’t tell me I was sick, I would just think I’m old.”

Joseph C.

The drug seems to be working for 70%, is what he told me and 70% is pretty good if you ask me.

Joseph C.

Deciding to Join a Clinical Trial

I know from my experience that a trial is what it says, it’s a trial. They don’t know what the answer is going to be. They’re going to take the results and compare it at the end. That’s what it means to me.

I said, “The transplant is not the answer. I don’t want that. What other option is there?” They said this is the option and this is what I did.

The paperwork was pretty much done by Mount Sinai. I had to sign at the end. I don’t remember what the details were.

Everybody’s going to be different. The trial is a trial. The drug seems to be working for 70%, is what he told me and 70% is pretty good if you ask me.

Joining the Pacritinib Clinical Trial

I started to do the trial. For the first year or so, the medicine was working but not working. I was producing red blood cells, but they weren’t staying.

I would get a transfusion and my hemoglobin would go up maybe one point per pint. If I went there with a 7, I come out and have a 10, but in 10 days, I’d be back to 7. That was what happened for a while.

All of a sudden, I had my last transfusion on September 15, 2021. Things started to kick in. My hemoglobin is now 14.9 and has been pretty steady between 13 and 14. Dr. Mascarenhas said I was famous in Mount Sinai and was like a poster child.

Pacritinib Receives FDA Approval

He told me the trial was going to end in January 2023. The drug got approved and is now known as VONJO. Everything was great. “But as of January 23rd, you’re off the trial,” he said.

Joseph C.

Joseph C.

Getting Financial Support for Treatment

I didn’t know how much the drug cost. I found out that it costs $22,000 a month. I got in touch with Mount Sinai and they gave me a grant.

Then I got in touch with the drug company and I qualified for an exemption. In case the grant isn’t good, the drug company will pick up the rest.

I’m under the assumption it’s for the rest of my life. This pill is keeping me alive so to speak.

Side Effects

For whatever reason, at one point in time, my spleen was getting bigger. I took this and then it shrunk by 65%. I don’t feel any different anywhere. He said I didn’t have to do anything. Maybe it’s the medicine. I couldn’t tell you, honestly. They told me it was large and then it shrunk.

They asked me about my food intake. I said it depends. Even up to now, some food tastes good and some food doesn’t taste so great to me. My appetite is good if it’s something that tastes good. If it’s something that I’ve had before and it was good then, sometimes it’s not so good now so I don’t eat as much.

I have a big appetite, but there are days when it doesn’t interest me to eat anything. It’s hard to say. Give me Italian food, I’ll sit and eat all day. Give me something else, maybe not.

With the hemoglobin and the platelets, my hemoglobin was at 5 and my platelets were at 2. Now my hemoglobin is at 14.9 and my platelets were 186 the last time I checked. But the platelets fluctuate. They’re not as steady as hemoglobin for some reason.

Joseph C.

For whatever reason, at one point in time, my spleen was getting bigger. I took [pacritinib] and then it shrunk by 65%.

Joseph C.

Being on Pacritinib Long-Term

This is my third year on pacritinib. They haven’t said, but I’m under the assumption it’s for the rest of my life. This pill is keeping me alive so to speak. My red blood cells have been pretty steady for almost a year and a half now so I’m thinking that the pill is the answer.

If I needed to have a transplant, I probably would have done it.

Importance of Seeing a Specialist

My primary care physician sent me to see an oncologist. I picked somebody based on somebody else’s experience who gave me some feedback as to where to go.

The oncologist and I discussed the scenario. He said, “You need to speak to a surgeon who does transplants,” and laid it on the line that this is what you need to do if you want to stay alive.

When I went and spoke to the surgeon, who was part of Dr. Mascarenhas’ team, he gave me a booklet to read and told me how the transplant works.

If I needed to have a transplant, I probably would have done it, but they gave me the clinical trial option and I decided to take it.

Joseph C.

Be educated with what you have.

Joseph C.

Being Physically Active

I do a Marcum Workplace run through my employer. I’ve also done a run for breast cancer. My wife had breast cancer so I’m all for the walk.

I’ve done a Michael Murphy Run in Long Island. I’ve done that for the last eight years. He was in the Navy and passed away in Afghanistan. He’s from our high school. Both sons went there and that place is loaded with Michael Murphy memorabilia.

I don’t run; I walk. I don’t walk as fast as I used to. I get there at 6:00 a.m. and park in the handicapped spot. I walk from the bus stop to the lake and go back and forth until I reach the four-mile mark on my watch then I stop. By then, it’s 8:00 a.m. The race hasn’t started yet and I’m already done. I can’t leave because all the roads are closed so I sit and wait, listen to music, or have a bagel.

Do exercise. Diet is another issue, but I think exercise is key to being in shape. If that helps you with this issue, God bless you.

Importance of Self-Advocacy

Go and check out the doctor that you go to see. Check out their credentials. Read the reviews. You might find some things that you don’t want to know or things that you want to know. It’s good to compare before making these decisions.

It’s important to be active. If somebody tells you something, you need to look it up and see what you can find. There are a lot of things out there. There are a lot of people out there who don’t know much about medical stuff and they listen to what somebody tells them. You need to be educated with what you have.

Joseph C.


CTI BioPharma logo

Special thanks again to CTI BioPharma for its support of our independent patient education content. The Patient Story retains full editorial control.


Joseph C. feature profile
Thank you for sharing your story, Joseph!

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More Myelofibrosis Stories

Stacy S.

Stacy S.



Diagnosis: Myelofibrosis with CALR and ASXL1 mutations
Symptoms: Fatique, cold hands and feet
Treatment: Agrylin (for thrombocythemia), Ruxolitinib (Jakafi), Fedratinib (INREBIC), stem cell transplant
Ruth R. Diagnosis: Myeloproliferative Neoplasms (MPN) Treatment: Chemotherapy, Bone marrow biopsy, clinical trial
Natalia's Myelofibrosis Story
Natalia A. Diagnosis: Myelofibrosis Symptoms: Anemia, fatigue, weakness, shortness of breath Treatment: Phlebotomies, iron pills, blood transfusion

Mary L.



Diagnosis: Myelofibrosis (MPN)
1st Symptoms: Fatigue, extreme dizziness (later diagnosed as vertigo)
Treatment: Pegasys, hydroxyurea (current)
Kristin D.

Kristin D.



Symptoms: None; caught at routine blood work
Treatment: Stem cell transplant
Joseph C. feature profile

Joseph C.



Symptoms: None; caught at routine blood work
Treatment: Clinical trial: VONJO (pacritinib)

Jeremy S.



Diagnosis: Myeloproliferative Neoplasm (MPN), Polycythemia vera (PV) and Chronic Lymphocytic Leukemia (CLL)

Cathy T. feature profile

Cathy T.



Diagnosis: Myelofibrosis

Symptoms: None; caught at a routine blood test
Treatment: Stem cell transplant
Andrew SchorrDiagnosis: Myelofibrosis, Chronic Lymphocytic Leukemia (CLL)Treatment: Clinical trial, Gazyva, Jakafi, Increbic, Reblozyl and steroids


Categories
Patient Events

Disputing Cancer Care Costs

How to Dispute Cancer Care Costs

A Practical Approach to Disputing Cancer Care Expenses, Backed by Experts and Real Patient Experiences

Edited by:
Katrina Villareal

Navigating the costs of cancer treatment can be overwhelming. This live conversation provides practical tips from experts and real cancer patients on understanding your health insurance, finding financial assistance programs, knowing your rights to appeal insurance decisions, and reducing financial toxicity.

In this conversation, we’ll explore the fundamentals of health insurance, emphasizing the importance of reading and understanding your policy, including basic insurance terms. Discover your rights as a cancer patient, learn strategies for appealing insurance decisions, and explore avenues for applying for financial assistance.

Hear from Abigail Johnson, a stage 4 metastatic breast cancer patient advocate, and attorney, Gregory Proctor, a multiple myeloma patient advocate, and Monica Fawzy Bryant, a cancer rights attorney and co-founder of Triage Cancer, as they share real-world experiences, health insurance tips, and strategies for tackling financial toxicity to help you navigate the financial aspects of cancer treatment. This live conversation took place in November 2023.


This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider for treatment decisions.



Managing Cancer Care Costs

Introduction

Abigail Johnson: Hello, everyone, and welcome to a discussion of how to dispute cancer care costs sponsored by The Patient Story and including representatives of patients experiencing this individually, as well as a representative from Triage Cancer.

The Patient Story’s tagline is Human Answers to Your Cancer Questions. Founded by a cancer survivor who took her love of storytelling and producing videos, they assist people in the cancer community to get that all-important peer support and information about how other people have handled something that you as an individual might be facing yourself.

Without further ado, I want to get to the amazing people that we have talking about this very human issue, which is getting your cancer care costs covered.

Managing Cancer Care Costs

Gregory Proctor: My name is Gregory Proctor. I’m a multiple myeloma survivor diagnosed back in July 2021. In the early stages, it was very overwhelming and very impactful not only emotionally but physically. Coming from a project management background, one of the things was trying to figure out how to navigate.

Information is not easily found in a lot of cases because if you Google things, you tend to get the bad before you get the good. But overall, my professional experience as well as having friends and family to help me move this forward has provided an overall successful outcome.

I’m proud to say that I’m still MRD negative, thriving, in remission, and continuing to flourish and be an advocate.

Managing Cancer Care Costs

Monica Bryant: My name is Monica Bryant. I’m a cancer rights attorney and co-founder and chief operating officer for Triage Cancer, which is a national nonprofit dedicated to providing free education on legal and practical issues that arise after a cancer diagnosis. We provide education to the individuals who have been diagnosed, their caregivers, and healthcare professionals who are often on the front lines of getting these questions.

Abigail: Thank you, Monica. Y’all wrote the book on cancer and the law. What’s the name of that again?

Monica: It’s Cancer Rights Law and it is published by the American Bar Association.

It isn’t written for lawyers because we wanted to make sure that it was written in a way that was accessible for anybody to be able to access it — whether it’s the person who’s been diagnosed, their caregivers, lawyers who are trying to help out, or healthcare professionals. It’s written in a way that anybody should be able to pick it up, regardless of whether or not they have a law degree.

Abigail: I enjoyed reading it very much.

Managing Cancer Care Costs

Like Monica, I’m also a lawyer, and in 2017, I was diagnosed with stage 4 metastatic breast cancer. I was 38 and it was, to put it nicely, a bombshell that went off in our lives and has changed everything since that has happened.

I’m working on getting into a clinical trial, which will be my sixth line of treatment. With breast cancer, because it’s a solid tumor, we don’t go into remission. That’s not necessarily a status or a goal for us. It doesn’t necessarily apply to our experience.

There can be no evidence of disease or, in my case, no evidence of active disease. I have been able to get to that point at least once in the last six years but I’m back getting a new treatment. For us with metastatic breast cancer, we go from treatment to treatment to treatment. There are a few that can go off treatment for some time.

I’m learning to adjust to being a professional patient, I like to call myself, because managing cancer itself can be a full-time job and that’s why discussions like this are very important because our quality of life, and Gregory alluded to this, is very much tied to not just how the cancer cells are being controlled in our bodies by the medication but also impacted by how we can get to that treatment, whether it’s literal transportation to get to that treatment or being able to afford cancer treatment.

Here in the US, cancer is quite the machine in a lot of ways. There are a lot of different players and moving parts. Our goal is hopefully to illuminate some of those moving parts, at least when it comes to covering the cost of cancer care.

Managing cancer itself can be a full-time job.

Abigail Johnson

Managing Cancer Care Costs

Health Insurance

Abigail: This concept of covering cancer care a lot of times boils down to insurance. In my experience, being on a private insurance plan through my husband’s employment as well as Medicare, the first thing that I always talk to people about is getting a copy of the insurance contract. That can be daunting for a lot of people because these contracts can be 200 or 300 pages long. They are written by lawyers and many clauses can be super complicated.

If this seems daunting, intimidating, and confusing, it is. It absolutely is. It is for the professionals that are working in this arena. Getting your insurance contract, whether you have a government-sponsored insurance policy, whether you’re working with the Veterans Affairs and have coverage there, whether it’s Medicare, some documents explain what is covered.

When it’s private insurance, it is a literal contract between you and the insurance company, and it spells out what they’re going to do and not do. In my experience, there are about 10 pages that are vital for me to know out of the 300-page long contract. I have those pages highlighted, bookmarked, saved, and written all over.

I continually go back to those pages to see the clauses and the language that govern what my insurance company is supposed to do. I set my expectations based on what my insurance company is supposed to do, and then I know if they have or not.

It’s important to know what tier your medication falls in because that impacts the cost of your copay.

Abigail Johnson

Many times, a medication, a surgery, or a procedure has to have prior authorization. The medical professional has to get with the insurance company and say, “We want to do X,” and the insurance company has to look over that and opine whether or not that is medically necessary. I won’t get started about how that is practicing medicine on the part of the insurance company, but that’s the system that we have.

My insurance company has 24 hours to respond to a prior authorization request from my medical team. That’s important for me to know because if there’s a delay, I can call the insurance company and say, “My doctor sent you a fax 48 hours ago. You had 24 hours to respond. This needs to rise to the top. You need to deal with this right away because you’ve not responded in the timeline that we anticipate.”

That’s one example of how knowing what my policy says, who’s supposed to do what, and when they’re supposed to do that helps me set my expectations. I’m not fussing at my doctor’s office if it’s not their responsibility and I’m not fussing at the insurance company if my doctor hasn’t done what they’re supposed to do. Knowing when they have not done what they’re supposed to do, I can bring that to their attention and that means that will become more of a priority for my insurance company.

It’s important to know what tier your medication falls in because that impacts the cost of your copay. These are examples of things that are important to know about your insurance policy so that you know how to navigate that.

Managing Cancer Care Costs

Gregory: I’ve worked with a lot of attorneys in my professional career, but I’m not one. I have always been a professional. I make my premium payment and expect that coverages are going to be there when I need them. Until something traumatic or something like cancer knocks on your door, you don’t realize the implications that you’re faced with.

We contacted my insurance company and they said, “Okay, we’re going to be able to help you move and navigate through this,” with all of the empathy and compassion that they try to give.

I’m 2 ½-3 months into treatment. I’m paying my $1,000 premium and doing everything I need to do, but I’m burning $22,500 a week. The billing department for my oncologist calls and says, “Mr. Proctor, we’re at a point where you’re a quarter of $1 million. We’re going to have to stop your treatment. Your insurance company hasn’t paid.”

I’m sitting here flabbergasted. I’m trying to fight for my life. I’m several months into my treatment and my doctor hasn’t received a single dollar from my private healthcare insurance. At that moment, I realized it wasn’t just about me fighting cancer. Now I’ve got to engage in something that you expect would be covered.

For me and my family, we had to turn the switch on and get laser-focused. Now it’s not just about the financial implications, insurance, and survival. We’ve got to look at all three with a critical eye.

Having the knowledge and knowing what to do with that knowledge to be able to save your life, save money, and avoid some of those pitfalls is extremely important.

Gregory Proctor

I had to contact the insurance company and say, “I need to see the full contract. I need to understand why you guys are not paying my doctor.” Their reason at that time was, “We have to go through an audit, Mr. Proctor. You’ve been healthy. You’ve never had any type of circumstance like this come along and then all of a sudden, now you go from 0 to $22,500 a week.”

To me, that wasn’t an excuse. I said, “I’ve never missed a premium. I’ve never missed a payment. I need this to occur for me on my behalf because I’ve done what I needed to do.”

Everyone comes from a different walk of life and sometimes knowing what to do as well as knowing how to do it becomes extremely important. One of the things that was formidably important for my wife and me was taking all of my project management experience and applying it to myself as the project so that we could cover all of the gaps.

As they always say, knowledge is power. In this particular case, having the knowledge and knowing what to do with that knowledge to be able to save your life, save money, and avoid some of those pitfalls is extremely important.

In most cases, those are not things that you think about when you’re thrown into the tsunami of cancer. You’re thinking how to get from day to day, from week to week. There’s a lot more involved and it all embodies getting yourself educated.

Abigail: Thank you for all of that, Gregory. You’re coming to this with all of the information and experience that you have. You’re going to do it as a project manager because that’s your background. Who you are, your strengths, and how you solve problems is going to be key.

Managing Cancer Care Costs

Understanding Insurance Terms

Abigail: Monica, what are the top things that patients need to know when they’re looking at their insurance contract or how to get cancer care covered?

Monica: There are some things that people really should understand about their insurance long before there’s ever a diagnosis or a serious medical situation. But the unfortunate reality is that in this country, health insurance is confusing. There are going to be differences depending on the source of that insurance, whether that’s government insurance, through an employer, or a policy someone purchased on their own.

Based on studies that have been done, only about 4% of Americans understand the four most common terms used in health insurance policies. People don’t even understand the words. We’re not even talking about complex legalese here. We’re talking about the basic words because we’re never taught what those words mean.

There is an amount someone pays monthly to have health insurance and that’s the monthly premium. They’re going to pay that amount whether they go to the doctor or not. It’s like having car insurance all year but never getting into an accident.

Once someone starts utilizing their health care, there are going to be some additional costs and those costs are going to depend on the policy. Most policies have an annual deductible, a fixed dollar amount that someone has to pay before health insurance kicks in. Someone could have a $500 deductible or a $5,000 deductible. It’s all going to depend on the plan.

Once they’ve met that deductible, insurance kicks in and pays a percentage. That percentage is referred to as the cost share or the coinsurance. Here’s where it gets tricky because we have multiple names for the same thing. Cost share and coinsurance are the same thing, and that’s a percentage. If someone has an 80/20 plan, once they meet their deductible, insurance kicks in at 80%, but they’re still responsible for 20%. And when the treatment is expensive, 20% is still a huge dollar figure.

Based on studies that have been done, only about 4% of Americans understand the four most common terms used in health insurance policies.

Monica Fawzy Bryant

In addition to that percentage, many plans have copayments, which is a fixed dollar amount that is going to depend on the policy and also potentially on the service. Someone could have a $25 copayment to see the doctor, a $35 copayment to see a specialist, or a $250 copayment to go to the E.R. Figuring that out could be complicated.

The most important thing for every single person to know about their health insurance policy is if there’s an out-of-pocket maximum and what is it. Because in theory, that’s the most that someone is going to pay out of pocket for their care if they go to in-network providers for the year.

Understanding that allows us to figure out what you are going to have to be responsible for out of pocket in a worst-case scenario. The way you get to your out-of-pocket maximum depends on the plan, but often it involves adding up everything you’re paying towards your deductible, your copayments, and your coinsurance. It’s everything you’re paying out of pocket except the monthly premiums.

The reason this is so important on the front end is when people are making choices around their health insurance. We have the opportunity to do that every single year now, thanks to the Affordable Care Act and a whole bunch of other laws.

To be an effective shopper and consumer of health insurance, you have to understand those terms and be able to do the math concerning your out-of-pocket maximum.

Managing Cancer Care Costs

Gregory: For me, that’s key. I always maintain a pretty healthy lifestyle. I don’t want to have to come up with $15,000 as a deductible. If I’m healthy and I still feel pretty good, I can go with a little less coverage. You take a little bit more risk.

I was diagnosed at the age of 50, which was not the best year to be diagnosed with multiple myeloma. The older I got, I began to get laser-focused in my mindset as it relates to my family of four and my insurance.

At the age of 50, I’m more susceptive to all of these things that maybe I don’t want to think about, but I need to be in a position to ensure that I’m covered holistically without any repercussions.

Abigail: It’s amazing how expensive everything is. One of the things about cancer treatment is the medication and prescription drug costs, which can be complicated. When you’re put on medication by your doctor, they don’t always tell you the price tag upfront. In the breast cancer world, many of the medications that we take will cost our insurance companies between $14,000 and $20,000 per month.

Managing Cancer Care Costs

Copay Assistance Programs

Abigail: In the context of private insurance, there are often copay assistance programs, which pharmacists will often help patients apply for. These programs are offered by the drug manufacturers or pharmaceutical companies. They will also have foundations sometimes. But depending on your insurance, these programs apply differently.

For myself, having a private policy means I’m eligible for copay assistance programs. Those copays go from hundreds of dollars a month to zero, oftentimes depending on which tier of medication you’re on.

My friends who transitioned to Medicare are surprised to notice that those copay assistance programs are not always possible when you’re on Medicare and that’s where those foundations do come into play as well.

Gregory, how has that affected you in terms of paying for your medication and working with the VA, where your primary insurance is?

Managing Cancer Care Costs

Gregory: I was in a unique category. I had private healthcare insurance with a national provider when I was first diagnosed. I had been away from the government programs for many years. Since I’d gotten out of the Navy, I hadn’t utilized any of their benefits.

I started going through this process and all of this funding that you don’t account for starts to show up at my doorstep. Blood work for $16,000, a test for $15,000, and I wondered what insurance is truly covering if these bills are showing up.

I was very lethargic and incoherent for five days a week for three and a half months because I was on chemo for five days a week, 6 to 8 hours per day, which was tough.

Once I finally got to the point of reckoning and saying it was time to get a hold of this situation, I found out that there are subsidy programs. Sometimes they’re publicly known, other times they’re not, particularly if you don’t ask. We started pulling our energy into how could we tap into maybe a program to be able to give us a grant and move forward.

On record today, I’ve spent $2.65 million. Navigating that journey was not easy… It’s overwhelming. You’ve got to get other people involved to help be your eyes and ears

Gregory Proctor

With private healthcare, there’s a little bit of leniency. By the time I was approved for government healthcare being a prior veteran, I couldn’t utilize those programs. It was a very delicate balancing act to ensure that going forward, I would be able to reap all of the potential benefits that I could not afford out of my pocket to maximize my overall primary care going forward.

Because on record today, I’ve spent $2.65 million. Navigating that journey was not easy. But certainly, you have to get laser-focused because no one is going to do it for you.

It’s overwhelming. You’ve got to get other people involved to help be your eyes and ears, to help address the questions of who, what, where, when, and how. Sometimes when you’re getting information from the doctors, you don’t want to accept the reality. Acceptance is always the key to making the first step in the progress of being able to battle and weather the storm.

Managing Cancer Care Costs

Abigail: You have personally spent $2.65 million or your insurance company has spent that?

Gregory: I love to throw that number out there because people always say, “Oh my, what happened?” For clarification, that’s the running total. When you think about that number and go back to what Monica said. Whether you’re 70/30, 80/20, or 60/40, part of that expense is coming from you as the patient.

When you step into the throes of dealing with cancer, these are the things that you have to get laser-focused on very early on. Are you going to be successful coming out of the back side of this? Are you going to be bankrupt or dealing with the overall financial toxicity of what it does to you and how it changes your life?

Abigail: Thank you for that. Those are big numbers. Mine’s a little over $3 million so I’m tracking with you. I have not spent $3 million keeping me alive, but certainly between my family and the insurance company.

Monica: Thank you for your service, Gregory. I’m glad that the VA was helpful in this process for you because it’s deserved.

Managing Cancer Care Costs

Financial Assistance for Cancer Patients

Abigail: Monica, would you like to talk a little bit more about financial assistance and how patients can go about getting help to cover their portion of these costs?

Monica: With respect to getting financial assistance, I would say don’t start there. That should not be step one when you see the big bills come in because there isn’t a whole lot to go around. As you both alluded to, there are some barriers depending on the type of insurance that somebody has.

Before someone goes down the path of trying to apply for financial assistance, there are some steps to take. Did the insurance company cover what they’re supposed to cover? That requires making sure you’ve waited until you’ve gotten your explanation of benefits, which is the letter from the health insurance saying this is what we’re going to cover and this is what you potentially owe. It’s about keeping track of your out-of-pocket maximums.

If someone understands what their out-of-pocket maximum is and what’s included in their out-of-pocket maximum, it can help them figure out how much they need from financial assistance. A lot of times, people get those prescription drug bills and don’t realize the prescription drug benefits are included. It doesn’t matter what their insurance company will pay or not. If you’ve hit your out-of-pocket maximum, they’re responsible for 100% of it.

Unfortunately, some additional steps fall into the laps of patients and family members before getting financial assistance.

Do a deep dive into what’s out there and what’s available. Even among the pharmaceutical companies, there might be different programs.

Monica Fawzy Bryant

With financial assistance, oftentimes people get tunnel vision when they’re thinking about sources of help. Abigail, you mentioned how expensive your monthly prescription drug is.

How am I going to get money? How am I going to get assistance to pay for that prescription drug? I’m on Medicare so I don’t have access to the same pharmaceutical programs that I did. What am I going to do now?

Are there other places you could potentially get help? Could you get mortgage assistance, utility assistance, or other types of financial assistance and then shift the money around? Anything that you set aside to pay for the mortgage or student loans can get shifted to help pay for prescription drugs.

Do a deep dive into what’s out there and what’s available. Even among the pharmaceutical companies, there might be different programs. Some companies can provide free drugs, some companies can provide assistance to pay copays. They all have different programs. Figuring that out is daunting.

At TriageCancer.org, we have a chart that lists most of the major cancer drugs, the pharmaceutical companies that make those drugs, and the various programs that they have to try to make it a little less daunting to go down the Google rabbit hole because that is stressful by itself.

You can look for other types of financial assistance or grants that might be out there based on the type of cancer you’ve been diagnosed with. Sometimes there’s even financial assistance for family members who might be acting as caregivers. We have a tool called Cancer Finances that has pulled those resources from trusted sources to make it a little easier. It’s still not easy but a little easier for people who are trying to seek out those sources of financial support.

Abigail: Great resources. I have sent so many people to Triage Cancer. If you have a Sam’s or a Costco membership, you don’t even use insurance when you go to your wholesale clubs. For a medication that I was previously on, my copay was $15, but if I got it without using my insurance company, it was $20, which boggled my mind. Unfortunately, that puts a whole lot of burden on the family to figure out some of those things.

Gregory, did you ever get assistance from a social worker to help you figure some of these things out? Was that something that was offered in your oncologist’s office?

The life that you know before and after cancer is totally different. Asking questions could be the differentiator in a lot of the things that we’re talking about.

Gregory Proctor

Gregory: Not in my oncologist’s office but as I was getting prepped for a stem cell transplant. As a patient, it is important for you to ask.

Seek out and ask as many questions as possible. What do I need to do? How do I need to do it? What resources? What assets? Even if your doctor doesn’t want to give you the answers, you need to continue to perpetuate that going forward because it’s your life. The importance of survival doesn’t have a price tag.

I looked at everything. My wife and I flipped everything upside down because, at that point in time, your life is already flipped upside down. The life that you know before and after cancer is totally different. Asking questions could be the differentiator in a lot of the things that we’re talking about.

Abigail: Thank you for saying that. I talk to so many patients all the time who are worried that asking questions might be offensive or upset their healthcare providers. While that is certainly a good human thing to think about, in a situation like cancer, it’s your life on the line so ruffling a few feathers doesn’t seem to be as important as getting the answers.

Managing Cancer Care Costs

Appealing Insurance Decisions

Abigail: I want to talk more about denials or when the insurance company is asking for your doctor to jump through some hoops. I talked about prior authorizations. What happens when an insurance company says, “No, we don’t think that that is medically necessary,” or like in Gregory’s situation, “We need to examine this a little bit more,” that sort of thing?

I want to throw out a couple of things that I’ve learned along the way in dealing with private insurance. Typically, when a doctor gets prior authorization, the insurance company says no. Usually, you, as the insured, get a letter that says why they denied it. Your doctor typically gets the same letter. And then what?

Besides changing your mind and doing something different that your insurance company goes along with, in my experience, what’s next is your doctor has the opportunity to do a peer-to-peer discussion. This is covered in all the insurance contracts that I have seen, along with the definition of what a peer is.

Very early on in my cancer treatment, my doctor wanted to do a PET scan. For those of us with solid tumor cancers, PET scans are often the gold standard in terms of seeing where the cancer is and how metabolically active it is. This is a tool that doctors need to be able to make good decisions.

A doctor employed by my insurance company, who was a family doctor about five years out of medical school, deemed the PET scan not medically necessary.

By looking at my insurance policy, I learned that my insurance company was required, upon my asking, to provide a peer to my doctor. I realized that somebody who’s five years out of medical school, who has a small amount of experience, and who is in a specialty that has nothing to do with oncology does not meet the definition of a peer.

I learned that I could say to my insurance company, “I require you to provide a peer to talk to my doctor.” That conversation took five minutes.

two people talking

In the first conversation where it was denied, my doctor spent 40 minutes trying to convince this doctor employed by the insurance company that what she was doing was standard of care. When she was able to talk to an oncologist — not an oncologist that had 30-plus years of experience, but somebody in the cancer world — it was a five-minute conversation and it was approved.

The first person that my doctor talked to was looking at a chart and the wrong category. She was looking at somebody who was stage 3 versus stage 4.

I’ve let my doctor’s offices and their staff know as they are scheduling that they can ask for a peer. Make sure it’s a peer who’s talking to your doctor.

By looking at my insurance policy, I learned that my insurance company was required, upon my asking, to provide a peer to my doctor.

Abigail Johnson

By looking at your insurance policy and understanding the definition of a peer, that one small thing can save your doctor time. That 40-minute conversation took my doctor away from seeing patients. The five-minute conversation was a whole lot more effective and efficient.

As an insured, you also have the option of filing an appeal. It can get involved and it’s a really heavy lift when it comes to attempting to explain to your insurance company why they are not following the contract.

Gregory, what experiences have you had in getting something covered, especially when you got that initial no?

Managing Cancer Care Costs

Gregory: After burning $22,500 a week and hitting a cap, hearing the words, “We will cover this, but we won’t cover that,” meant, “We’ll cover you for the period of your transplant. However, if there are any complications, then that’s on you, Mr. Proctor.”

Going from my private healthcare and trying to get the VA to pick me up had already been denied by the VA. It was very frustrating very early on knowing that I would want it to go through the VA from the beginning, but I was denied and that’s just how the system works.

Their rationale was there was no service-related tie that could tie back to me being diagnosed with cancer. I had to get attorneys involved and justify what my job and MOS (military occupational specialty) was in the military. Going through that took a tremendous amount of time.

You can’t ever give up. You have to continue to push.

Gregory Proctor

For me, one of the things that I had to sink into throughout this whole journey is don’t ever give up. Find a will. Find a way to navigate. I had to go back through all of the tests to prove that I had multiple myeloma.

Once we proved that, I was able to get 100% coverage but that took approximately five months from the time that I was diagnosed up until I was getting ready to go into a stem cell transplant.

The best Christmas gift that my wife and I could have ever received in December 2021 was that letter from the VA saying they are now my primary healthcare provider and they will cover not only my stem cell transplant but all post-maintenance costs. We’re talking, “Hallelujah!”

That was well worth all of the effort, the headache, the anxiety, the concerns, and the worries to get to that point. But like I said, you can’t ever give up. You have to continue to push.

Abigail: Thank you for those reminders. It’s easy to give up, especially when there are a lot of roadblocks. I love how you mentioned that you realized you needed help and that getting a professional involved was important.

Managing Cancer Care Costs

Legal Rights as Insurance Consumers

Abigail: Monica, would you talk a little bit about the legal rights that we each have as consumers and talk about those appeals and what services might be available to patients?

Monica: Gregory did a little bit of my job for me in that we don’t have to take no for an answer. The details around that will certainly depend on the type of insurance we’re talking about, whether it’s the VA, Tricare, Medicare, or Medicaid.

If we’re talking about private insurance, at the bare minimum, every single consumer is entitled to at least two levels of appeal. The first level is an internal appeal and that’s essentially where we go back to the insurance company and say we’d like you to reconsider.

The internal appeal can take a couple of different forms. It could be a written internal appeal where you’re providing documentation. It could also be what Abigail was referring to, which is a peer-to-peer conversation between two healthcare providers.

There are time limitations on when we as consumers get to file internal appeals. We usually get 180 days. Then there are time limitations on the insurance company to give a response depending on where somebody is.

In Abigail’s example, it was a denial of a prior authorization so the insurance company has to answer within 30 days. If you’ve already received the service and they’ve come back and said, “Nope, we’re not covering that,” then they get 45 days.

Here’s the problem. When we’re talking about cancer care specifically, a lot of times we don’t have 30 or 45 days to wait for an answer. What we as consumers need to understand is that we have the right to ask for an expedited appeal when the need for care is urgent, which it is in most cases when we’re talking about cancer care. The insurance company then has to answer within 72 hours. But people don’t know this. People don’t understand that they have this right.

If the insurance company ultimately comes back and still says no, we have the right to an external appeal and that’s where we go to an independent entity. It’s going to vary from state to state, but an independent entity will look at all the facts and all the medical evidence, and then make a decision as to whether or not the care is medically necessary.

People need to understand those words, medically necessary, are the legal standard on which the appeals will be decided. Is it medically necessary for you to get that service? The decision of the independent entity at these external appeals is binding on the insurance company.

We don’t have to take no for an answer. The details around that will certainly depend on the type of insurance we’re talking about

Monica Fawzy Bryant

I made it overly simplistic for this session. I understand that requires a lot of legwork and effort to get the doctors involved. I’m not minimizing any of that, but here’s what we know to be true.

Of the millions of claims that are denied every single year, 99.9% of them are never appealed. Yet we also know that when people do appeal, somewhere between 40 and 60% of the time is decided in favor of the patient.

When we’re talking about how to help people afford cancer care, I want to talk about appeals long before we get to financial assistance. If insurance is coming back and saying, “We’re not going to cover that,” for whatever reason, “You’ve hit your max,” “We think you’re too expensive,” “We don’t think you need your PET scan,” if you’re not appealing those denials, you’re essentially leaving money on the table.

Managing Cancer Care Costs

Abigail: That is such a great point. When your insurance company knows that you will appeal and will not take their decision lying down, in my experience, they’re much less likely to deny things in the future. It’s really important to make it hurt and make it difficult for them.

I’m not talking about doing anything drastic. Take up a lot of their time. Be bold in saying what you need and in filing those appeals. In my experience, they typically won’t be as likely to deny something in the future.

Thank you for giving us those numbers, Monica, because those are shocking numbers, like the millions of dollars that Gregory and I were talking about earlier.

I’m going to do whatever it takes because I’m all about living. I still have a lot more life to live than to let cancer dictate and determine how that’s going to be for me.

Gregory Proctor

Monica: It’s also helpful to put into context for people who are already overwhelmed. They’re reaching capacity in what they can handle. They’re trying to survive. Now the lawyer is saying to go through this burdensome appeals process. The numbers are helpful, particularly around the number of successful stories, to make that additional burden almost worthwhile, so to speak.

Gregory: That’s the main reason why my mantra going through this was don’t ever give up. There’s got to be a will. There’s got to be a way. It may not be door A, it may be door B or door C, but you’ve got to keep asking those questions and ensure that you’re getting the answer that you need to move forward.

When my life’s at stake, it doesn’t matter to me if it’s $1 billion. I’m going to do whatever it takes because I’m all about living. I still have a lot more life to live than to let cancer dictate and determine how that’s going to be for me.

holding credit card using laptop

Financial Toxicity

Abigail: I want to talk about financial toxicity. We’ve thrown that word around a couple of times. I didn’t realize this, but in 2013, it was researchers at Duke University that coined the term financial toxicity to describe the financial hardship and distress that can result from the high cost of cancer treatment.

Their research showed how the burdensome out-of-pocket expenses associated with cancer care, such as copays and deductibles, can negatively impact a patient’s mental health and quality of life, leading to increased anxiety, stress, and depression.

We hear all the time that stress is not good for patients. Stress is not good because it changes chemical things in your body. It makes your quality of life more difficult when you are stressed out. Then here comes our medical system that causes stress on us.

Gregory, how have you handled the mental toll of those bills and the financial stress? How do you handle that emotionally, too?

At one point in my life, I was questioning whether or not I would be able to afford groceries that week. That’s when you know the toxicity has gotten hold of you.

Gregory Proctor

Gregory: You’ve got to be willing to accept that this is your reality. That’s the first step in going forward with any type of traumatic or life-altering things that are happening.

The other aspect that became very, very important for me personally was stepping away from the notion of dealing with cancer 24 hours a day, seven days a week. One of the most therapeutic things that I did during my cancer battle was getting out in nature, walking on the trails, and separating my mind from the overall objective of having this wreak havoc on me.

With all of the debt and bills coming in, your life still goes on. You still have your normal expenses and now you’ve got cancer expenses and all these other things that happen. At one point in my life, I was questioning whether or not I would be able to afford groceries that week. That’s when you know the toxicity has gotten hold of you. You’ve got to navigate and weather the storm to figure out how to maneuver and move forward.

I’ve done a lot of things to get through that and find assets and various other elements in my life that I could move forward without having so much of the burden of the debt wreak havoc on me.

Managing Cancer Care Costs

Abigail: Thank you for sharing that. I tell my medical teams all the time that I have to fit cancer care into my life not fit my life into cancer care. It’s a paradigm or a different way of looking at things that I think makes us as patients address some of these things a little bit differently.

Monica, would you talk a little bit about resources that Triage Cancer has or strategies for managing medical bills and finances so that people can have a good quality of life?

Monica: It’s at the core of what Triage Cancer is about. We have tons of educational resources in a variety of formats because we’re trying to meet people where they are and how they learn. Some people are big readers and that’s how they’re going to absorb information so we have quick guides and longer practical guides that can be downloaded and read off our websites.

We have live events that people can join for free, both in person and virtually. We also have worksheets, animated videos, and other materials to help people with things that can contribute to financial toxicity.

Health insurance status and navigation are only one piece of the puzzle. Certainly, employment changes that can occur after a diagnosis are going to impact somebody’s finances. Everything that normally happens in life that impacts finances keeps happening. You don’t get a pause button on paying the mortgage.

Managing Cancer Care Costs

When you look at TriageCancer.org, you will see a variety of topics around health insurance, employment, and disability insurance to address holistically the financial impact that cancer and cancer care can have on people. When thinking about how to maximize health insurance, people need to remember a couple of things.

Every single year, we have the opportunity to make choices. If someone is experiencing high out-of-pocket expenses due to their insurance this year, there may be opportunities to pick a different source of insurance for the coming year.

Open enrollment for Medicare is coming up at the end of the year and that’s an opportunity to make some different choices — whether that’s finding a plan with a lower out-of-pocket maximum, a plan that has more of your providers in their network so they’re being covered at higher rates, or has a different prescription drug formulary so any prescription drugs you’re taking may be covered at a better rate.

You may be experiencing high financial toxicity right now based on the type of insurance you have, but there may be opportunities to make those changes for the coming year. We have resources at Triage Cancer to help you make those determinations.

When you look at TriageCancer.org, you will see a variety of topics around health insurance, employment, and disability insurance to address holistically the financial impact that cancer and cancer care can have on people.

Monica Fawzy Bryant

We also have a legal and financial navigation program where people can fill out a form and they’ll get a calendar link where they can schedule a call with one of our staff. We’ll talk through their situation and the sources of financial toxicity. We’ll try to provide them with personalized education and information about what they need to know and understand, point them in the right direction, and give them action steps. You can read quick guides all day long, but you may still have questions about your situation.

Abigail: Those are wonderful resources. I’ve sent all kinds of people to Triage Cancer and they’ve helped them figure things out and navigate those things.

Since Monica was talking about open enrollment and the possibility of adjusting your coverage, working with a good insurance broker can also be a tremendous help, especially when you’re going on Medicare. There are all these supplements and different options. Working with somebody who can take your situation, your doctors, your medication, and your diagnosis, and help you back into those policies that would meet some of those needs.

Typically, brokers are paid by the companies so you are not out of pocket any amount of money when you work with an insurance broker. That’s one thing that I suggest to a lot of people, especially those transitioning from private insurance to Medicare because it can be complicated with all of the different supplements.

Managing Cancer Care Costs

Monica: I actually would give the opposite advice to somebody and that’s based on reports that have come out of the U.S. General Accountability Office. Over the last several years, many insurance agents and brokers have misbehaved in several ways. Now, certainly, that is not all of them. There are wonderful insurance agents and brokers out there so I’m not disparaging the profession as a whole by any stretch of the imagination.

Oftentimes, people can be led down a path that may not be the best for them. Those agents and brokers are paid by the insurance companies so they have a vested interest in enrolling people in specific insurance policies, even if those aren’t the best policies for that patient.

For the cancer community, where there is a heightened importance of making sure they are in the right plan for them, we would suggest unbiased sources of support and there are different places that people could go.

You might get a very different answer from an insurance broker versus a social worker who is employed by your cancer center. Getting different input can be important.

Abigail Johnson

If someone is transitioning to Medicare for the first time, every single state has a SHIP program, which is the State Health Insurance Assistance Program. They’re called different things in every single state. They are trained to help people navigate their Medicare options and they are unbiased. They do not get paid by enrolling people in one plan over the other.

For people who are buying insurance in the marketplace, there is a similar entity called In-Person Assistors. Again, they are paid by the government not by the insurance companies so they don’t have any bias as to putting people in one plan over the other. I agree with your sentiment about seeking help and support in picking those plans, but I’m not sure that’s the place I would send someone for support.

Managing Cancer Care Costs

Abigail: That’s why we’re having this conversation to talk about different perspectives. I work with a handful of insurance brokers who I have personally vetted and are now familiar with metastatic breast cancer because they’ve assisted a lot of people that I have worked with. Having those connections and knowing if there are people in your community who are doing some of these things can be key.

But thank you for that caution, Monica, because that’s also important to remember who you’re talking to and who they’re employed by. You might get a very different answer from an insurance broker versus a social worker who is employed by your cancer center. Getting different input can be important.

Gregory: You have to educate yourself. You have to go through due diligence to ensure that you understand your situation. I’m more aware of my needs now going forward as opposed to before because it was something that I wasn’t interested in. Make sure that you educate yourself and do your due diligence because those two things can save you thousands of dollars going forward.

As we’re navigating this system, how we embody that power can make a big difference in navigating cancer treatment.

Abigail Johnson

Empowerment

Abigail: The word empowerment gets thrown around a lot. We need to understand how we’re looking at empowerment because there are multiple definitions of empowerment.

One definition, that makes me itchy, is that somebody is giving you power. The second definition, which doesn’t make me as itchy, is that we all have inherent power as people and as patients. As we’re navigating this system, how we embody that power can make a big difference in navigating cancer treatment.

Gregory, how do you look at empowerment? How have you gotten in touch with your power as an individual and as a patient?

praying hands

Gregory: When I was diagnosed, I realized the importance of my purpose in life and the importance of rekindling my faith in the Lord Jesus Christ. My empowerment came back through not only my connectivity to my spirituality but also through my family, friends, and the congregation of people who follow me on social media who were there to lift me.

I took that empowerment and tried to be a beacon of hope and inspiration, uplifting people’s minds and souls when they go through a horrific experience, and letting them know that they’re not in this alone. There’s unconditional love out there, even if you get that unconditional love from a stranger who gives you power and uplifts you to be able to weather the storm and be able to move forward.

Abigail: Thank you for that, Gregory, that was beautiful. Monica, would you like to chime in on this whole idea of empowerment and how that fits in with what Triage Cancer does?

Monica: It’s not my job as a cancer rights attorney to give somebody else power because that power is theirs. But what I can hopefully give people is the knowledge that they need. Knowledge is power.

You shouldn’t have to have a law degree, a project management background, or a million people surrounding you and lifting you to be able to survive this disease with your homes intact, your jobs intact, your insurance, and overall financial health. Yet, unfortunately, because of our system, sometimes that is what’s needed. We want to walk side by side with people and support them through education and providing information so that they can then take that and use their power.

I took that empowerment and tried to be a beacon of hope and inspiration, uplifting people’s minds and souls when they go through a horrific experience, and letting them know that they’re not in this alone.

Gregory Proctor

Gregory: That’s very, very powerful. As we talk about education, you need to seek others who have endured and weathered the same storm that you’ve gone through. A lot of times, people say that may not be a good idea or maybe that is a good idea.

For me, that became one of the circumstances that my wife and I were able to glean from others who are five-year survivors, 10-year survivors, and 20-year survivors and understand how they made it that far. Of course, now drugs and everything has changed, but knowing how they weathered the storm became a tremendous, valuable lesson for us.

Abigail: That’s a wonderful comment, Gregory, this idea of seeing examples of other people, which is what we’re doing and what The Patient Story does all the time as well.

Managing Cancer Care Costs

Key Takeaways

Abigail: Know who you are. Allow your strategies and how you figure out how to pay for cancer to flow from who you are. You’re doing something that’s not you. It’s not going to work so well so know who you are.

Knowledge is power. Knowing how to navigate things, knowing the right things, and sticking to your guns in that context can be extremely helpful.

Don’t take no for an answer. Keep going. Keep pushing. Keep asking questions.

Don’t forget to ask for help and collect those people who you can ask so make sure that you’re saving the link to Triage Cancer, which is TriageCancer.org.

Watch for other patients who are navigating this, jot their names down, and know that you might be able to reach out to those people for help. That list can include social workers, nurse navigators, and professionals who do these things that you’re trying to do.

Vote with your feet. When your insurance policy doesn’t cover what you need, vote with your feet. If your doctor is not going to bat for you and not going to do that peer-to-peer discussion, vote with your feet. If you know that medication is way too costly and there’s an alternative, vote with your feet.

We have these choices and to vote with our feet can be extremely helpful and maintain that quality of life to fit cancer care into our lives versus the other way around.

Knowledge is power. Knowing how to navigate things, knowing the right things, and sticking to your guns in that context can be extremely helpful.

Abigail Johnson


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Dr. Toufic Kachaamy is a gastroenterologist trained in advanced endoscopy, including endoscopic ultrasound, he helps care for patients fighting pancreatic, stomach, esophageal, colon, liver or bile duct cancer at our Phoenix hospital. As Chief of Medicine at City of Hope Phoenix, Dr. Kachaamy has clinical leadership responsibilities for several medical departments and supportive care services.

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