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Michelle’s Recurrent Stage 1 Bladder Cancer Story

Post author By Katrina Villareal
Post date September 18, 2024
No Comments on Michelle’s Recurrent Stage 1 Bladder Cancer Story

October 18, 2024

Michelle’s Recurrent Stage 1 Bladder Cancer Story

Interviewed by: Taylor Scheib
Edited by: Katrina Villareal

Michelle’s experience with recurrent stage 1 bladder cancer started with intermittent blood in her urine, which led to multiple urgent care visits, where she was initially misdiagnosed, and eventually a diagnosis of papillary urothelial carcinoma. Upon diagnosis, she underwent TURBT surgery to remove the tumor and then chemotherapy.

Despite multiple rounds of chemotherapy, Michelle’s cancer recurs within three to six months after stopping treatment. Her doctor suggests ongoing monthly maintenance chemotherapy, but she negotiates for less frequent sessions due to the harsh side effects. She became vigilant about recognizing symptoms of recurrence, helping her manage the chronic nature of her cancer.

Facing the possibility of losing her bladder, she expresses a preference for an Indiana pouch, influenced by her friend’s experience and her desire for a better quality of life. She has already undergone surgery to improve her chances of adapting to the Indiana pouch, demonstrating her proactive approach to managing her health.

Michelle emphasizes the importance of self-advocacy in medical care, seeking multiple opinions, and making informed decisions. She acknowledges the emotional toll of living with cancer and stresses the importance of mental health care and self-care.

Name: Michelle R.
Age at Diagnosis:
- 43
Diagnosis:
- Bladder Cancer
Staging:
- Stage 1
Symptoms:
- Irregular occurrences of seeing streaks of blood in urine
- Specific type of pain when bladder is full
- Unexplained weight loss
- Urinary urgency
- Malaise
- Fatigue
Treatments:
- Chemotherapy: gemcitabine
- Surgery: transurethral resection of bladder tumor (TURBT)

Thank you to Johnson & Johnson 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.

I had been experiencing some streaks of blood in my urine… It was very random and not consistent at all.

Introduction

I live near Atlanta, Georgia. I’m a mother to an adult son and an auntie to my nieces and nephews. I have two brothers and a sister. I’m a genetic genealogist. If I’m not working my full-time job, I’m working my side business, Bless Your Vibes LLC.

I have recurrent stage 1 non-muscle-invasive bladder cancer (NMIBC). I’ve had nine recurrences, countless surgeries, and chemotherapy. As long as I catch it before it invades the muscle, I’ve been told I can deal with this for the rest of my life.

Pre-diagnosis

Initial Symptoms

I had been experiencing some streaks of blood in my urine. It would happen for a day or two and then nothing for a month, and then it would happen again. It was very random and not consistent at all. I already had a hysterectomy several years prior, so I knew it wasn’t related to that. I didn’t have any pain nor symptoms of a urinary tract infection, so I immediately thought about kidney stones.

Going to Urgent Care

When I went to urgent care, they did a culture and said, “You don’t have any infection, so it’s probably kidney stones. We’re going to give you antibiotics and send you on your way.” I went to urgent care a total of four times from June 2017 to February 2018.

She said, “I want you to demand to see a urologist. You’ve been experiencing this for quite some time. Tell them painless bleeding.’

The last time, I did a televisit. I knew they were going to give me antibiotics because it was the same old story, so I planned to call them during my lunch break. The doctor I spoke with during my televisit was more thorough than any other doctor I’ve ever had in my life.

She asked me questions and didn’t allude to any infection or kidney stones. She said, “I want you to demand to see a urologist. You’ve been experiencing this for quite some time. Tell them painless bleeding. Don’t say ‘blood without pain.’” She stressed that to me for whatever reason.

Seeing a Urologist

The urologist still didn’t indicate anything. They said, “We’ll try to figure out what’s going on.” I had a CT scan and some urine tests, but that was about it.

Diagnosis

Getting the Diagnosis

The urine test results came back through my patient portal and said I was positive for papillary urothelial carcinoma. I knew what carcinoma was, but I didn’t know what papillary urothelial meant. I panicked. It was Friday afternoon and everybody’s gone. The only person I told was my boss at work because I had to leave early.

First thing on Monday morning, I called the office and left a message. They called back and said, “We can’t tell you anything. You need to come in to see the doctor.” I couldn’t go in until later that week, so I had to sit with it for a whole week.

When I went in, the doctor was so matter-of-fact and cold. He started talking about treatment. I said, “Stop. Do I have cancer?” He looked at me like I should already know. I was numb. He said, “Based on the CT scan, it looks like there’s a large mass. Normally, we would go in with a scope and then proceed with surgery. But since we know that it’s cancer, can we bypass the scope and go into surgery?” I said yes because I wanted this out of me, so he scheduled it for two weeks after.

I had one friend… She wasn’t that close of a friend but for her to drop what she’s doing to help me, stay with me, and bring me home meant the world to me.

Treatment

Discussing the Treatment Plan

With bladder cancer, you have high-grade or low-grade, muscle-invasive or non-muscle-invasive. My doctor pulled out a treatment chart and it showed everything. It was pretty clear-cut. It showed the schedule of treatment, which starts from removal or transurethral removal of bladder tumor (TURBT), and then it goes through the surgeries and the types of chemotherapy.

Preparing for Surgery

I remember trying to prepare myself. I was freaking out because up until the night before, I had no ride to my surgery. My son didn’t have his license yet and all of my friends worked. I didn’t have any family to help. I literally had no one. I started calling people that I casually knew and nobody stepped up.

Then I had one friend who I called and I was telling her about it when she said, “Why didn’t you ask me?” I didn’t even think about it because she’s disabled and she turned out to be the one who would step up. She wasn’t that close of a friend but for her to drop what she’s doing to help me, stay with me, and bring me home meant the world to me. It humbled me. I didn’t even know then all the friendships that I was about to lose over this, but from back home, she’s the only friend I have left. I’ve lost all of them.

I went into surgery and at the time, I felt like I had a lot of people depending on me, so I told the doctor, “I’m not just another patient. Treat me well. Do me right because I have a lot of people who depend on me.” I felt he was offended by that because he said, “I treat all my patients the same.” He was very dry.

I asked, “What’s the best-case and worst-case scenario?” He said, “Best-case scenario is I get it all, you go home today, and you rest. Worst-case scenario is you wake up and have a bladder bag.” He told me this right before going in and I was in complete shock. I couldn’t do anything else but pray.

I had a follow-up after surgery and there was another growth. It was the first time I got to see it inside of me.

Surgery

After surgery, my friend was the first person to greet me coming out. She was in the recovery room and as I was waking up, I felt that he got it all and I was going home. I believed it in my head. After I got more coherent, I asked the nurse, “Did he get it all?” And she said yes.

I went home to recover, took the next day off, and went back to work the following day. It was like I had cancer and then I didn’t have cancer in that short time. I didn’t know at the time that it was going to happen nine more times over 6 ½ years.

One of the first things this doctor told me was, “I have patients who have been coming to me for 20 years. I go in and get it out, and they go about their way for 20 years.” At first, I was upset that he said that, but later, I was glad because that prepared me. He indicated that it was going to be normal to keep coming back.

Not every case is chronic, but I like to know things because I like to be prepared. It helped me put it into my head that I’m going to have to deal with this. On one hand, it helps me. But on the other hand, I don’t feel like I’ll ever have that winning moment. It’s going to be a lifetime thing to deal with.

Recurrence

I had a follow-up after surgery and there was another growth. It was the first time I got to see it inside of me. It looked like a succulent flower because it was so tiny and had little shoots. I’m lying there looking at the screen, thinking, “How could something so beautiful be so deadly?” Then he said, “We can take care of this right now.”

I asked him, “What does this entail?” He said, “We pluck it off.” Then through the screen, I saw this little grabber thing come through and he plucks it. It was very surreal. You go from cancer to no cancer because once that’s gone, you have no evidence of disease.

If I have to do a cystoscopy or a procedure, that takes priority because in order to keep my bladder, I have to stay on top of everything and not wait.

Moving to Atlanta

I was moving from Ohio to Atlanta, so I asked him what I needed to do. He said, “Come see me one more time before you go.” I did that and I was clear, so I was okay.

I started searching for the top urologists, top oncologists, and the hospital networks in the area. I did a lot of research and called some of the hospitals, which included Emory because they were in my insurance network. I asked, “If you had a serious problem with your bladder and you needed a urologist, who would you go to?” They told me about this doctor and as soon as I connected with the office, it was so different.

This doctor is a urologic oncologist and supposedly the best in the network. I explained my situation and gave my brother’s address since I didn’t have my new address yet. They emailed me papers and everything. There was such an urgency to be seen and that made me feel very comfortable and that I would be taken care of.

When I went, they said, “We’re not even going to have a consultation. We’re going right into cystoscopy. I want to see what’s going on there.” I’m glad they did because that was my fourth growth and it had taken off. It was very large and from the pathology report, it was high-grade.

After that scope, they said, “We’re going to do the surgery and we’re going to do your chemo,” so I did that.

During my follow-up, I didn’t see the doctor, but I saw someone else from his team. I had been taking cues from my first doctor that it wasn’t a big deal. She was the first one who looked me in the face and said, “Do not put this off because you can die from this,” and that was the first time anybody said that I could actually die from this.

Up until then, it was very casual. From that point on, I took everything very seriously. If I have to do a cystoscopy or a procedure, that takes priority because in order to keep my bladder, I have to stay on top of everything and not wait.

There are specific symptoms that I now recognize when I have active cancer.

Being Aware of Symptoms of Recurrence

I’ve had this nine times now, so I’ve paid attention to my body and my symptoms, and I started recognizing patterns. When I have active growth, there is a very specific pain that I feel in the morning when my bladder is full. Once I empty it, the pain goes away. When I feel that, I know I have a growth.

I’m a plus-sized person. I’m fairly large. But before I was diagnosed, I lost a lot of weight. I lost 60 lbs and that was one of my other symptoms before I was actually diagnosed. I had unexplained weight loss and I had been trying to lose weight my whole life.

Then I have a lot of sense of urgency to go to the bathroom, like when you have a UTI. I can’t wait for too long because the fuller my bladder, the more it hurts. Then I have a general feeling of unwell and being tired a lot. There are specific symptoms that I now recognize when I have active cancer.

One time, I was having bad pain in the morning. I had a cystoscopy not even a month prior and he said, “It’s probably because you’re still healing.” I said, “No, something’s going on.” He got me in and sure enough, it was another growth. This doctor trusts that I know my body and he’s fully on my team.

Maintenance Chemotherapy

For the last recurrence, we know that chemo worked. I got chemo for a whole year and didn’t have any growth, but when I stopped, I had another growth within three to six months, so I had to have another surgery and chemo.

I told him that it seems my growths occur between the three- and six-month mark, so he wants to introduce another chemo to mix with the original one I was taking and do monthly maintenance chemo probably for the rest of my life. I’m not down for that, so I said, “That’s hard on me. What if we go every two or three months?” That’s not even what the board recommends, but he’s willing to consider it.

He said I could stop and we’ll see how I do. In six months, it came back, so I’m going to be on chemo for the rest of my life.

Side Effects of Chemotherapy

The chemotherapy drugs are all different. I get nauseous, but I don’t get sick. I have a little thinning of my hair, but I don’t go bald. I feel overall icky and tired. I go through hot and cold flashes, low-grade fevers, and night sweats. Those last probably about five days before I start to feel a little bit better. But when I went for the whole year, the longer I was doing it, the worse I felt every month.

It started like I was having aphasia or problems with recalling certain words. My memory wasn’t as good. I was having trouble concentrating and trying to process things. It was more complicated. I still have that problem where I trip on my words sometimes. It got progressively worse the longer I was doing chemo.

Taking a Chemo Break

I was supposed to do it until the end of the year, but I asked him, “Can I take a break for a month?” Since I had the six-week course before the monthly sessions, he said I could stop and we’ll see how I do. In six months, it came back, so I’m going to be on chemo for the rest of my life.

It’s going to be a cat and mouse game, and the end result is a ticking time bomb. I’m going to do whatever I can to avoid losing my bladder and as long as I can tolerate the chemo. If it gets to the point where I can no longer take it, then I’ll probably have my bladder removed. There aren’t very many options for that.

Even if it meant I was going to lose the battle to not lose my bladder and choose quality of life over quantity of life, I made peace with that.

Facing the Possibility of Losing Her Bladder

There’s only one option that I would like. My best friend had urethral cancer, a rare form of it, and she got an Indiana pouch and that to me is the most tolerable. I don’t want to live with a bladder bag. It’s a decision I made before I met her. The only options I knew of were a neobladder or ileostomy bag, and I didn’t like either of those options because if the neobladder doesn’t work, then all you have is the bag.

I’m older and my child is grown and independent. I’ve suffered a variety of things throughout my life. I’m a chronic pain patient and with where I’m at in my life, I didn’t want to suffer, so I made the decision. Even if it meant I was going to lose the battle to not lose my bladder and choose quality of life over quantity of life, I made peace with that, and that was hard for other people.

I didn’t really talk about it, but I mentioned to people close to me, “Spend time with me now.” I didn’t come right out and say it, but I would drop hints. Then I met my friend and she showed me that and for the first time, I actually had hope that I could live with this little pouch and do the catheter. I could deal with that. Now that’s where I’m at. If I have to lose my bladder, I want the Indiana pouch.

When I was first diagnosed, I was fortunate to get involved with a cancer support center in my old town. I started going to support groups and would see there was only one other person with bladder cancer and he had a bag. He was pretty matter of fact about it and he was happy. He didn’t go through what I did, but his was found at a later stage.

You could tell which ones had a good support system and which ones didn’t. The ones who had a good support system wanted to fight and they fought until the very end.

At the time, I thought I had a good support system, so I was ready to fight. There was a woman who came in who had been diagnosed with stage 4 and it looked like there was no hope for her, but she had such a good support system. Her decision was to not do any treatment. She was going to live the rest of her days.

I remember that meeting because that’s where we got into quality versus quantity. She said, “Why would I prolong my life with the extra time I have being miserable, rather than have a shorter life and be absolutely happy and at peace with it?” That hit me so deeply because I wasn’t even nowhere near where she was as far as stage, but it put in my head that if I ever get to that point, that’s what I would do. It allowed me to process those choices and come to terms with it.

I knew people wouldn’t understand that. Even to this day, when I talk about it, people would say, “Why would you even think like that?” And these are people with cancer. You’re not me. You’re not going through what I do.

Everybody’s days are limited, whether you have cancer or not. We only have one life, so you have to do what you can in between the dashes.

Shared Treatment Decision-Making

My doctor is still pretty dry, but I’ve grown to appreciate him. I had a different surgery a few years ago and prior to that surgery, I let him know right away, “I’ll do whatever I need to do to keep my bladder, but if it comes down to losing my bladder, I will pass. I want you to know that’s where I’m at.” He respected that and said, “I’ll do whatever you want.” I appreciated that for a variety of reasons. He must have written it in my file, so he knows that when I come in, we have the surgery and then chemo. It’s become routine now.

When I had the high-grade recurrence, it got to the point where we weren’t sure and I was scared. I had met my friend by then and brought it up to him. I said, “Can I do the Indiana pouch if I have to lose my bladder?” He said, “Let me see your abdomen.” At the time, I had a B belly, so my waist dipped in and right where the crease was is where the stoma would be. I asked, “How would that work?” He said, “It probably wouldn’t.”

I had this discussion with him. My concern was if I had a bladder bag, every time I moved, bent over, or sat, it would fold over on itself, so it would pinch off the flow. The stickers for the bag wouldn’t stick. I would then have a higher risk for infection and leaks. It solidified why I wasn’t going to live with a bladder bag.

I thought about it and said, “What if I got a tummy tuck to smooth that out?” I’m a bariatric patient too and I had lost some weight. He felt around and said, “If you could get this smoother, I think you would have a better chance,” so I started on that journey to get that done.

I had a panniculectomy, so now I have a big round D belly and I’m comfortable with the fact that if I had an ileostomy bag, I wouldn’t crease anywhere. But then I met my friend and that made me feel even better. Now that I’ve had the surgery, I could live with that. It was important that I had that discussion with my doctor because if he blew me off, then I wouldn’t have made that decision.

At my last visit, I brought up that I’m coming up to seven years. He said, “If you want to remove your bladder, we can do that, but I don’t think you’re there yet. This is all superficial, but I understand that if the chemo’s getting to be too much and doing all this is too much, we can do that. But I remember what your decision was initially.” Whatever I decide, he’s comfortable with it.

Where we left off was, I have to let him know whether we’re going to introduce this other chemo and try a few rounds every three months to see if that keeps it away. I can live with that and that’ll buy me a little bit more time. Everybody’s days are limited, whether you have cancer or not. We only have one life, so you have to do what you can in between the dashes.

Importance of Self-Advocacy

Self-advocacy is absolutely critical. I talk about it on my social media and I have a lot of women sending me messages, not very many men, but I tell them that this doesn’t have to be a death sentence. It’s a health challenge, especially if you have the type that I have.

You have to advocate for yourself and understand what’s going on with you. Ask your doctor. Don’t feel like you’re putting him off. If he or she’s brushing you off, find another doctor. Get those answers and make those decisions.

Don’t let any doctor gaslight you. I’m a big proponent of that. I don’t think I would’ve been like this if it wasn’t for all the other experiences I’ve gone through in my life. It brought me to this point where I can advocate for myself and others.

A lot of people I talk to don’t know how to advocate for themselves. I’ve seen five oncologists, two different ones in the same week. There’s nothing out there that says you can’t go to another doctor. You have to fight for yourself and speak up for yourself.

Handling the Emotional Toll

I haven’t carried myself with grace. I’ve spent a lot of time crying and being angry at everything. Oddly, one thing I never felt was, “Why me? Why did this happen to me?” I don’t know why. I can’t tell you why, but I’ve not handled it very well.

There have been a lot of times that I get depressed. I shut down. I get gripe-y with people. I withdraw. I’ve always been a quiet person. Everybody says you have to remain positive and be positive. In a lot of aspects, that’s true, but you also have to be a realist and allow yourself to feel these feelings to get through them.

My counselor said, ‘Before cancer or any major health issue, you experience a grieving process over the life that you had before the diagnosis.’

Some things that I do that help me is seek mental health care. When I was first diagnosed, I was seeing a counselor and was on anxiety medication. When I moved, I didn’t need those anymore because back then, I had other situations I was dealing with that I wasn’t in anymore.

I practice a lot of self-care. I used to feel guilty about spending money on myself, especially as a parent, but I don’t anymore because it’s vital to my survival and helps me cope after years of dealing with my cancer.

You go through a grieving process too, much like a death. My counselor said, “Before cancer or any major health issue, you experience a grieving process over the life that you had before the diagnosis. You’ll never go back to life before that diagnosis, especially with cancer. You start grieving the loss of that life, so you need to go through all those steps and emotions to get through it.” For a lot of people, that’s hard.

The biggest stigma in the cancer community is to fight it and beat it. Either beat it or you lose. Normally, those are your only options. But when you have cancer that keeps on coming back, you don’t have that. You’re either sick or not sick. You never win. You never go the rest of your life not having to worry about it again. It becomes a part of you and you learn to deal with it. It’s like getting diagnosed with any other type of major illness. There’s before the diagnosis and after the diagnosis. You have to figure out how to live with it. Find a good support system and resources to help you.

Publishing a Cancer Care Book

When I was first diagnosed, there were different things that I had to keep track of. I had a little notebook where I was writing everything down on because I couldn’t keep track of everything, especially once I moved. I had to get new doctors, new patient portals, and new insurance. There was too much for me to keep track of. I found a group and talked to other people about it.

I’m a graphic designer by profession, so I thought about making a book for other people and created a guided journal called Cancer Care Book, which is available on Amazon (no commission is being earned with this link). It’s geared toward women, but men could use it too. It’s for anybody who has cancer but specifically for newly diagnosed people.

There are different sections in it where you can keep track of all your appointments and bills, write things out like a journal, or if you’re an artist, you can draw or doodle. There are coloring pages because I’m a big believer in art therapy.

There’s a section called The Tough Stuff where you can organize your bucket list items and final wishes. They may deny it, but everybody will think about what happens if they die and this is the perfect way. Nobody has to see this if you don’t want to.

If you get so sick and have a caretaker, you can keep track of all the information, like medication, and hand it off to a caretaker. There’s an emergency contact list on the first page, so if something happens to you, people will know who to reach out to. I put everything that I thought I would want when I was first diagnosed.

You can’t take care of anybody else if you don’t take care of yourself first.

Words of Advice

I made a video that showed six things that are key to your survival and the biggest one is early detection. Don’t wait. If you have any kind of symptom or you feel like something is wrong with your body, get it checked out. Don’t put it off. Early detection is key.

Advocate for yourself no matter what. Get those answers and get education.

Find your tribe. Find your support. They’re out there. On my website, I have a Resources page with over 500 websites for all cancers.

Take care of yourself because much like when you’re flying on a plane and they tell you to put the oxygen mask on first, you can’t take care of anybody else if you don’t take care of yourself first.

Anyone who has had a cancer diagnosis needs to get some kind of mental health care to process everything. You can find a lot of help in support groups and support centers, but they’re limited and can only help you so much. If you’ve never seen a counselor or a therapist before, once you get a diagnosis, they should be next on your list of doctors to see.

You have to come to terms with your mortality. A lot of people think they’re going to live forever. You have to shift your thinking. Cancer could take you out, a car accident could take you out, or a fire could take you out. Anything could happen. You need to reevaluate your life and make better choices of what’s important to you and your closest loved ones.

Special thanks again to Johnson & Johnson for its support of our independent patient education content. The Patient Story retains full editorial control.

Thank you for sharing your story, Michelle!

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Lauren’s Stage 4 Breast and Stage 4 Colon Cancer Story

Post author By Chris Sanchez
Post date September 18, 2024
No Comments on Lauren’s Stage 4 Breast and Stage 4 Colon Cancer Story

September 18, 2024

Lauren’s Stage 4 Breast and Stage 4 Colon Cancer Story

Interviewed by: Taylor Scheib
Edited by: Chris Sanchez

Lauren, from Houston, Texas, is living with stage 4 breast cancer and stage 4 colon cancer. Her journey began in 2014 when, after breastfeeding her second child, she discovered a lump in her breast. As her doctor initially dismissed it as fibroadenoma, Lauren did not undergo further testing. Two years later, she developed pains in her breast and noticed that her left nipple looked strange, and upon further examination, doctors diagnosed her with stage 3 breast cancer. She underwent chemotherapy, a mastectomy, and radiation, followed by hormone therapy for several years.

In 2021, Lauren began experiencing stomach pains and noticed blood in her stool. Following a colonoscopy, she was diagnosed with stage 3 colon cancer after doctors discovered a cancerous lymph node. She underwent surgery and chemotherapy but struggled with side effects, particularly from the chemotherapy drug oxaliplatin. Lauren also began to explore alternative treatments like high-dose intravenous vitamin C and fasting, inspired by research on treating KRAS mutation cancers, which are known to be particularly aggressive and difficult to treat.

In 2022, after experiencing further stomach pain, a PET scan revealed that the cancer had spread to Lauren’s abdominal lining and spine. Her oncologist gave her a terminal prognosis, estimating that she had around 10 months left to live. Desperate, Lauren intensified her vitamin C treatments, fasting, and other therapies. Remarkably, by December of that year, her PET scan showed no evidence of disease, although her doctor cautioned her to remain vigilant.

Lauren’s journey took another turn when a biopsy revealed that her spinal cancer was not colon cancer but a recurrence of her breast cancer, which had resurfaced and spread while her immune system was weakened. Although she has had to deal with recurring spots of cancer in her spine, Lauren has successfully managed her colon cancer, with her tumor markers remaining low. She credits her alternative treatments, alongside traditional therapies, for keeping her cancer at bay.

Now, Lauren undergoes PET scans every 3 months to monitor her condition. While managing cancer has become part of her daily life, especially with gastrointestinal side effects from her colon surgery, she remains proactive in her treatment and hopeful for the future. Despite the challenges, Lauren emphasizes the importance of staying informed, advocating for oneself, and maintaining hope, especially for those dealing with KRAS mutation cancers.

Name:
- Lauren B.
Age at Diagnosis:
- 31
Diagnosis:
- Breast cancer
- Colon cancer
Staging:
- Stage 4 for both
Initial Symptoms:
- Lump in left breast that grew
- Strange appearance of nipple
Treatment:
- Surgery (radical left mastectomy, lymph node removal; removal of part of colon and appendix)
- Chemotherapy (Doxorubicin and Taxol; Oxaliplatin and Xeloda)
- Radiation therapy
- Hormone therapy
- Complementary treatments (fasting, high-dose intravenous Vitamin C)

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

Thank you for sharing your story, Lauren!

Inspired by Lauren's story?

Share your story, too!

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

Table of Contents

Introduction
Pre-diagnosis
Diagnosis
- Getting the Biopsy Results
Treatment
Working While in Treatment
Switching to Immunotherapy
Treatment Plan
Managing Scanxiety
Words of Advice

My symptoms started a year or two before diagnosis. It started with a change in bowel habits, size, consistency, some blood in the stool, and abdominal pain.

Introduction

I’m a stage 4A colorectal cancer fighter. My wife and I live in Chippewa Falls, Wisconsin. We have a wonderful 28-year-old daughter.

I’m a full-time firefighter and critical care paramedic. I’ve been doing firefighting for about 16 years and paramedicine for about 13 of those 16 years.

Pre-diagnosis

Initial Symptoms

My symptoms started a year or two before diagnosis with stage 4A colorectal cancer. It started with a change in bowel habits, size, consistency, some blood in the stool, and abdominal pain. I had some acid reflux type of reactions that my wife and I chalked up to aging and not being as healthy as I could be. My wife has irritable bowel syndrome and I thought some of it was IBS because some foods would trigger some reactions in me.

I was working full-time for the department for about a decade and a couple of years later, I decided to change over to a neighboring department. For these jobs, we have to pass a physical agility test.

I have been working by myself daily. I was in pretty good shape. The test is a pretty rigorous test to be able to do what we do. I was 48. I was doing this at an older age than the 20-year-olds they were usually hiring.

I was diagnosed with diverticulitis and sepsis, so they started me on antibiotics right away.

A couple of months later, we responded to a house fire. At some point, my battalion chief pulled me off the line and said, “You look wiped out. I’m going to sit you out for a little bit to catch your breath.” I felt a little tired, but, again, I was getting a little older.

I sat out and went back in for another round. This time, the chief was on the scene and said, “Nick, take your gear off. You don’t look good. Go back to the ambulance. You’re going to be doing rehab, making sure everyone else is doing okay, but we don’t want you going back in.” I thought something was weird.

I called my wife to meet me in the ER. I didn’t know what was going on. I’ve got bad abdominal pain. I haven’t slept. I’m going to go get checked out.

Diverticulitis & Sepsis

I was diagnosed with diverticulitis and sepsis, so they started me on antibiotics right away. They weren’t sure if surgery was going to be necessary, but they transferred me to another hospital. At that point, I was stable.

When I got transferred, I met with a thoracic surgeon and started to realize that things were serious. He said, “We’re not going to go in right away. We’re going to keep an eye on you tonight. Hopefully, things will subside with some more antibiotics and some steroids, if we have to. But we’re going to keep an eye on you and evaluate you. We’d like to avoid surgery.”

The next day, when they were getting my vitals, the nurses said, “We see you’re slated for surgery.” That turned into a laparoscopic washout. They found that I had a perforated colon in the sigmoid area, the area right before the rectum, but that had healed itself.

All of a sudden, I heard the doctors say, ‘That’s not good.’ I remember seeing a black mass on the screen.

They went in through a couple of small incisions, washed everything out to make sure there was no fecal matter, and stitched me back up. I had a couple of surgical drains. I was in the hospital for five or six days and then I was sent home to heal.

I ended up getting readmitted a couple of days later because I had some drainage coming from my drain sites. After a CT scan, they found I had an abscess. I believe E coli was one of the culprits. There was something else too, so they needed heavy-hitter antibiotics.

After another two weeks of antibiotics, the PICC line was removed. I met with the surgeon and everything was looking great. He said, “Let’s do a follow-up colonoscopy to check how the diverticulitis is.”

Colonoscopy

I wanted to sleep through it. I was joking with them and we were all relaxed when all of a sudden, I heard the doctors say, “That’s not good.” I remember seeing a black mass on the screen. He tried advancing past it and I said, “Ow,” but I didn’t feel it. I said “ow” instinctively. He said, “We can’t get past this mass. We’re going to pull out.” The tone changed. You could have heard a needle drop in that procedure room.

They wheeled me back into the recovery room where my wife was waiting. On the way there, one of the nurses handed me a polished stone that had the word “hope” stamped on it. I didn’t think that choked me up, but I carry it wherever I go. In hindsight, it meant a lot and drove home the seriousness of the situation. We didn’t know exactly what was going on, but something wasn’t right. I have enough medical training and field experience to read the room and know it wasn’t good.

The doctor eventually came back in and said they couldn’t diagnose it yet. They took a small sample to send off for testing to confirm what they thought it was. He wouldn’t say whether it was cancer or not.

The good news was they got the tumor with clear margins. They felt it hadn’t spread far…

Diagnosis

Getting the Biopsy Results

I was waiting for the results at home. When I finally got the notification on my phone, I checked it and it said adenocarcinoma. Now we know what we’re dealing with. It’s cancer of some sort. I never thought about it as a possibility.

Treatment

Sigmoid Colectomy

During the colonoscopy, he said we were going to have surgery because what it was had to come out. He referred me to surgery right away. Luckily, it was the same surgeon who performed my earlier surgery who I trusted with my life.

I met with him about a week later. They were going to do an exploratory surgery until they knew exactly what it was in there and then do their thing.

I remember being in the room when my mother-in-law came out too. My wife was there, of course. They wheeled me in, put in the IVs, and told me to start counting back from 100. I don’t think I hit 95. Hours later, I woke up in my hospital room with a slightly sore throat. They performed a sigmoid resection. I can’t remember how much of my colon they took out, but I didn’t require an ostomy, thankfully. They were able to resect it and reconnect it right away.

The good news was they got the tumor with clear margins. They felt it hadn’t spread far, at least in the tissue of the colon. But the surgeon sampled some lymph nodes right next to the tumor site. They took out 49 and 19 of them tested positive for cancer.

I stayed positive. The whole reason I’m in this fight is my family.

CAPOX Chemotherapy

At that point, I was referred to oncology. I met with my oncologist. His nurse was a former ER nurse who I was familiar with and seeing a familiar face went a long long way.

He explained what he planned on doing based on the CT scans. They saw some inflammation in other lymph nodes and they weren’t sure if that was post-surgical. They wanted to do another CT scan to check, but they were happy about the margins being clear. I was staged at 3C then. It metastasized a little bit past the point of origin but not very far.

The first day of chemo was going to include labs and a CT scan to see where we were at. The plan was to do CAPOX: capecitabine, an oral medication, and oxaliplatin, an IV medication. I would do the oral chemo for two weeks and then on the third week, I would go in for the IV chemo. They would do labs on those days to make sure everything was okay.

Unfortunately, the doctor didn’t like what he saw on the CT. He wanted to get a little more defined imaging, so he set me up for a PET scan and delayed the chemo. A couple of days later, we came back to start chemo again and get the PET scan read.

The doctor confirmed that it had spread to the lymph nodes in the abdominal area, along my aorta, and up to my left shoulder. It had spread a lot further than we thought it had.

I felt like every time we made a plan to move forward, we were getting kicked back a couple of steps, but I stayed positive. The whole reason I’m in this fight is my family. I believe that someday, this cancer will get me, but I’m not going down without a fight. I’m stubborn, so it’s going to be a long fight. I won’t go down without swinging.

I have a four-day weekend so I tried to time my infusion, so I had a couple of days to recover post-infusion and feel somewhat human before returning to work.

Side Effects of CAPOX Chemotherapy

Chemo wasn’t fun. It knocks you out. I felt fatigued on the first day. For probably a week and a half, when you start getting the infusion, you can’t drink cold drinks. It felt like swallowing glass shards. A lot of fatigue and neuropathy kicked in.

I didn’t like being out in the cold and I love ice fishing. You’ll catch me outside at -20°F on a normal day, but with chemo, not a chance. I had to be bundled all the time.

My eyes were always drying out, so they hurt a lot. I had insomnia, joint pain, and muscle pain.

They added Avastin (bevacizumab), which is an immunotherapy, to my chemo routine. That caused a bad acne rash on my back from the waistline up to my neck. The doctor had never seen nor heard of it, but we can only attribute it to Avastin.

Working While in Treatment

I was able to go back to work full-time as a firefighter. I have a four-day weekend so I tried to time my infusion, so I had a couple of days to recover post-infusion and feel somewhat human before returning to work.

My work was very accommodating. We’re firefighters, so we don’t sleep all day, but the chief said if I needed to rest, I could go to the dorm, which I appreciate. I never took him up on it. I tried to stay with my brothers and sisters training or doing calls, and that worked great.

I was going to be on treatment for the rest of my life. I might get some time off if we get no evidence of disease at any point, but it will come back at some point and I’ll have to go back on treatment.

Switching to Immunotherapy

The initial plan was for six months or eight cycles of chemo and Avastin. Unfortunately, because of the restaging, I was going to be on treatment for the rest of my life. I might get some time off if we get no evidence of disease at any point, but it will come back at some point and I’ll have to go back on treatment.

My tumor marker was through the roof when this all started and it was dropping with chemo. We were seeing shrinkage in the lymph nodes. Chemo sucks, but it’s doing what it’s doing, so we stayed very positive.

When we got to cycle six, we noticed my CEA was going up a little bit. We were doing CT scans every three months and we noticed some growth in the lymph nodes. The doctor said, “We’re going to stop the chemo. It’s not working. You can only receive so much oxaliplatin before it becomes completely ineffective. This saves us a couple of cycles where if we need to go back to it, we can go back to it. We’re going to switch over to an immunotherapy called Keytruda (pembrolizumab).”

The side effects of immunotherapy are supposed to be much less than chemo and I’m all for that. I switched from chemotherapy to immunotherapy in August 2023. I still have very slight neuropathy every now and then in my toes and my fingertips. Nothing debilitating but a reminder that I was on chemo at one point and that probably won’t get any better or any worse, hopefully.

Keytruda is a half-hour infusion. Side effects are minimal. Between cycles two and three, while we were camping, I noticed that my resting heart rate was higher than it should be. I was not exercising as much and a little out of shape, but I shouldn’t have a resting heart rate of 130-140 beats a minute. I was sweating a lot without doing anything, so I couldn’t figure it out. I talked to the oncologist and they ran some thyroid tests.

One of the known side effects of Keytruda is thyroid burn. It’ll cause hyperthyroidism until the thyroid burns out and then it’ll cause hypothyroidism.

The support of my family, my work family, and my friends is what gets me through this.

Treatment Plan

We want to do Keytruda for 18 more months. It’s a two-year plan. We’ll see what it does and go from there. Hopefully, the response brings everything down to normal levels, I won’t have evidence of disease, and I can ride that out for a while.

Fingers crossed, maybe Keytruda is the cure for colon cancer, but realistically, I don’t think so. I think it’ll be a lifetime battle, but it’s going to be a long life. The support of my family, my work family, and my friends is what gets me through this.

Managing Scanxiety

As a paramedic, I’ve dealt with patients with panic attacks and anxiety. Anxiety’s a real thing. A lot of times, it doesn’t seem like it with the patients you’re dealing with, but now that I’m put in that position, it’s a real thing. I’ve dealt with it even before cancer through another set of unfortunate circumstances and luckily, I have a great support group in place.

We see a lot of things as paramedics and firefighters, so after a while, you realize things aren’t normal. I had to start paying closer attention to my mental health. I started seeing a therapist and she’s great. She taught me how to deal with stress, anxiety, and my feelings.

What we go through as cancer patients is not something most people go through nor is it something they understand.

Stay strong and recognize that the stress is real. What we go through as cancer patients is not something most people go through nor is it something they understand. Take a deep breath. Listen to what your mind and body are telling you.

Your feelings are valid. Don’t try to brush it off and try to be strong by pushing your way through it. Rely on your support team. If you have a therapist, talk to that therapist.

Most oncology teams come with a social worker. Use that resource. Rely on your family for strength. Tell your spouse what you’re feeling even when you don’t want to. Sometimes talking about it gets it out there and puts it away, as opposed to it weighing you down.

What helps me is retreating home, spending time with family, or staying busy with work. Rely on your hobbies if you have any. If you don’t, find some. I’m a big fisherman. I love fishing. You could put me on a lake and even if I couldn’t catch a fish for days, I would be in my happy place. Find something that helps you disconnect from the cancer and what you’re going through.

Words of Advice

For anyone who might be experiencing symptoms that you’re not quite sure of, listen to your body. Talk to your doctor. Advocate for yourself. If you feel something’s not right, push for tests to try and figure out what’s going on. The answer, “We don’t know what’s wrong with you,” is not acceptable. Push to find answers.

For cancer warriors who are going through this, keep going. You’re not alone. There’s support beyond your family, friends, and coworkers. There are a ton of support groups online. There are social workers available. There are platforms like The Patient Story.

(For more support options, please visit one of our many partners such as Colontown or the Colon Cancer Coalition.

You’re not in this alone. Some days, it may feel like it. Some days, I get down in the dumps, but I find something to get me back up. I find a reason to keep going. There are a million reasons to keep going and even if you find just one, that’s all it takes.

Listen to your body. Talk to your doctor. Advocate for yourself.

Thank you for sharing your story, Nick!

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Gigi’s Stage 1A, High-Grade Serous HER2+, PR+, ER- Endometrial Cancer Story

Post author By Katrina Villareal
Post date July 25, 2024
No Comments on Gigi’s Stage 1A, High-Grade Serous HER2+, PR+, ER- Endometrial Cancer Story

August 12, 2024

Gigi’s Stage 1A, High-Grade Serous HER2+, PR+, ER- Endometrial Cancer Story

Interviewed by: Taylor Scheib
Edited by: Katrina Villareal

Gigi’s initial symptoms included hiccup-like sensations behind her sternum, gastrointestinal issues, and spotting. An ultrasound showed a thickened endometrial lining, and a biopsy confirmed her diagnosis – endometrial cancer. A month later, she underwent a radical hysterectomy.

Initially, Gigi thought a hysterectomy would suffice, but further testing revealed a more serious condition. Her tumor had 25% mixed undifferentiated cells, placing her in the top 1-2% for her cancer type.

Although additional tests showed no spread of the cancer, her oncologist recommended chemotherapy. Gigi enrolled in a clinical trial, receiving six rounds of carboplatin and paclitaxel every three weeks.

Alongside chemotherapy, Gigi took dexamethasone, anti-nausea medication, antihistamines, and gabapentin. She found chemotherapy more manageable over time, despite side effects like facial redness, dry skin, nausea, bone pain, restless leg syndrome, neuropathy, and tinnitus. Fortunately, her blood work stayed stable, allowing continuous treatment without delays.

Gigi adopted a plant-based, low-inflammatory diet and explored alternative therapies to support her body during treatment. She now has CT scans every nine weeks and follow-ups with labs every 12 weeks.

Inspired by resilient patients, Gigi actively participates in her care and treatment decisions, collaborating with respected care providers, asking tough questions, and balancing being well-informed with learning to let go.

Name: Gigi D.
Diagnosis:
- Endometrial Cancer
- HER2+
- PR+
- ER-
Staging:
- 1A High-Grade Serous
Initial Symptoms:
- Hiccup-like sensations behind the sternum
- Gastrointestinal issues
- Spotting
Treatment:
- Clinical trial: chemotherapy (carboplatin and paclitaxel)

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

Thank you for sharing your story, Gigi!

Inspired by Gigi's story?

Share your story, too!

Margie Wilson’s Endometrial Cancer Story

Lexie’s High-Grade Endometrial Stromal Sarcoma Story

Gigi’s Stage 1A, High-Grade Serous HER2+, PR+, ER- Endometrial Cancer Story

Ellen’s Stage 3C, Grade 3 Endometrial Cancer Story

Tags clinical trial, endometrial cancer, ER-, HER2+, PR+, side effects

Chemotherapy Clinical Trials Colon Colorectal FOLFOX (folinic acid, fluorouracil, oxaliplatin) FOLFOXIRI Immunotherapy Patient Stories Surgery Treatments

Amy’s Stage 4 Colon Cancer Story

Post author By Katrina Villareal
Post date July 19, 2024
No Comments on Amy’s Stage 4 Colon Cancer Story

August 7, 2024

Amy’s Stage 4 Colon Cancer Story

Interviewed by: Taylor Scheib
Edited by: Katrina Villareal

Amy initially noticed a slight change in her stool consistency, which persisted despite normal test results. After a year-long delay due to the COVID-19 pandemic, a colonoscopy revealed a 6-cm mass in her colon. Although the initial biopsy showed no cancer, surgery confirmed cancer in the tumor center and 11 out of 21 lymph nodes. It was stage 4 colon cancer.

She began treatment with FOLFOX, experiencing severe side effects like jaw pain, cold sensitivity, and neuropathy. Despite completing the regimen, a slight increase in CEA levels prompted further tests. A CT scan and MRI revealed cancer in her liver, leading to a relapse diagnosis. Unhappy with her initial oncologist’s pessimism, she sought a second opinion and switched to a more supportive doctor.

Her new oncologist initiated FOLFOXIRI, which shrank the tumors but wasn’t enough to eradicate the cancer, leading to surgery and an ablation. When the cancer resurfaced, she joined an immunotherapy clinical trial. The difference between chemotherapy and immunotherapy was substantial, providing her with a significantly improved quality of life.

Throughout her stage 4 colon cancer journey, Amy emphasized the importance of a supportive medical team, listening to her body, advocating for her health, and maintaining movement and proper nutrition during treatment. She also stressed the need for open communication with healthcare providers about side effects and health concerns.

Name: Amy L.
Diagnosis:
- Colon Cancer
Staging:
- 4
Initial Symptoms:
- Slight change in stool consistency
Treatment:
- Chemotherapy: FOLFOX, FOLFOXIRI
- Clinical trial: immunotherapy

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

What might be normal for somebody else might not be for you. If there’s a change, it’s important to talk to your doctor about it.

Introduction

I’m from the Seattle Pacific Northwest area and I was diagnosed with stage 4 colon cancer.

Pre-diagnosis

Initial Symptoms

I only had one symptom, which was a very small change in my stool. It became slightly looser, but it wasn’t consistent. For most people, that might not be a big deal, but I hadn’t changed my diet. The first time I noticed it was when I had just come back from Spain and I thought it was from traveling. I gave it a few weeks, but it wasn’t getting better.

PCP Appointment

I listened to my body and talked to my doctor about it within a month of this first symptom. My doctor at the time thought it was food sensitivity. They did autoimmune testing for Crohn’s and celiac disease, but those came up negative. They did an allergy panel to see if I developed any new food allergies. That came back normal. I also had my first CEA test, but I had no idea what that was and that also came back normal.

I was blessed to have a doctor who was very proactive and didn’t ignore my symptoms. They knew that I knew my body. What might be normal for somebody else might not be for you. If there’s a change, it’s important to talk to your doctor about it.

Unfortunately, they couldn’t get me in for a colonoscopy. They did the fecal immunochemical test (FIT) test. They did all these tests and everything was coming back normal.

He recommended me to a dietician who started looking at what I was eating and what we could change that might explain the stool change. My doctor said that since everything’s coming back normal, he wanted to do due diligence to make sure that there’s nothing they might be missing. He said, “Let’s get you in for a colonoscopy.” That was in the end of 2019.

They called in and said my procedure was non-essential and not COVID-related, so I needed to be put on hold… Unfortunately, I ended up waiting for a whole year.

Getting a Colonoscopy

They were booked back a few months. I wasn’t considered urgent. Nobody thought I had cancer. I was 39. They said they’ll get to me at the end of January or early February 2020. Then the COVID pandemic happened.

A week before my appointment, they called in and said my procedure was non-essential and not COVID-related, so I needed to be put on hold. They would call when they could make it happen again. Unfortunately, I ended up waiting for a whole year.

During that year, I was furloughed, so I was staying at home. My symptoms went away, which confirmed to me that maybe it was something I was eating since I wasn’t eating out.

By January 2021, I got a phone call asking if I wanted to schedule my colonoscopy again. I almost said no and that I didn’t need it anymore because the problem had gone away, but a little voice inside me told me to go ahead and do it. The “worst” thing that they could tell me is that nothing’s going on. I had nothing to lose, so I told them to go ahead and schedule it. They scheduled me for the first week of February 2021.

I didn’t have any other symptoms, like pencil-thin stools, bloating, or pain. Nobody was looking for cancer, especially colon cancer. Most people who get colon cancer are in their 70s and 80s. The first oncologist I had even told me that I was the youngest patient he ever had. Most of his patients were 60 and older, so it wasn’t on anyone’s mind that I could have cancer.

When I did the prep for my first colonoscopy, it was worse than the colonoscopy itself, but it’s a small drop in the bucket out of all the days in my life. On the day I came in, everything proceeded as normal. I got onto the table and they told my husband that the procedure could take up to 30 to 45 minutes. He couldn’t stay with me, so he dropped me off and left.

They put me in twilight sedation so I’m out of it, but the doctor’s voice and tone cut through. She turned to her nurses and said, “Where is her husband? Get him back here right now. Call him. We need him back here right now.”

She didn’t say anything, but because of her tone, I knew something was wrong. I felt my heart dropped to my stomach. I was half awake and the anesthesiologist was trying to put me back to sleep because my eyes were open and I was starting to ask questions. I didn’t feel anything, so it wasn’t traumatic.

The biopsy results showed there was cancer in the center of the tumor and 11 of 21 lymph nodes.

Diagnosis

Biopsy

When they wheeled me back into a curtained area, my husband was already there waiting for me. The doctor came and said they found a 6-cm mass in my colon.

I waited for the biopsy results to come back and when she finally called, she said they biopsied the tumor, but there was no cancer. However, they were extremely concerned given the size. It was either going to turn into cancer soon or there would be cancer in the center and not on the outside, so they wanted to get me in quickly. Everything was indicating that they had “caught this in time” and that I would just need surgery and might not even need chemo.

Surgery

They scheduled the surgery within three weeks of that conversation. They were on top of it and wanted to get it out.

The surgeon came in to talk to me. The biopsy results showed there was cancer in the center of the tumor and 11 of 21 lymph nodes. The tumor hadn’t broken through the colon, like they usually see with more advanced cancer, so they were not expecting to see cancer in my lymph nodes. He was very shocked it was stage 4 colon cancer.

I made an appointment with a doctor at Fred Hutchinson Cancer Center to get a second opinion because I wanted to know more.

Oncologist Appointment

My mom was an ER nurse. She also has leukemia, so she hasn’t worked while dealing with that. My mother-in-law is a hematology-oncology nurse at the Mayo Clinic. I’m fortunate to have knowledgeable people who helped me through the next process.

They referred me to my regular oncologist and said he’d go through my stage 4 colon cancer treatment plan. I had a meeting with him and it went okay, but I ended up switching. He told me that I would need clean-up chemo or adjuvant chemotherapy. Everything looked fine. He wasn’t hugely concerned.

Treatment

FOLFOX Chemotherapy

They said I was going to do FOLFOX (folinic acid, fluorouracil, and oxaliplatin) and then we would do a CT scan. They did a CT scan right after the colonoscopy where they found the mass, but they didn’t find anything else. He said it’ll be good.

Getting a Second Opinion

I made an appointment with a doctor at Fred Hutchinson Cancer Center to get a second opinion because I wanted to know more. I knew nothing. Is FOLFOX the standard treatment? What were my treatment options for stage 4 colon cancer?

Different doctors have different preferences and I wanted to ensure I was getting all the information. I made an appointment and brought all of my medical records to make sure. The doctor said they would do the same treatment.

I had a very rare side effect where I had jaw pain… This was a rare side effect of oxaliplatin.

Side Effects of FOLFOX

I did 12 and it was terrible. Before my second round, I had a very rare side effect where I had jaw pain. It was the most excruciating pain I’d ever experienced in my entire life. It radiated from my jaw back up around my neck and felt like somebody had put my head into a vice.

They didn’t know what was going on. I didn’t find out until I switched oncologists that this was a rare side effect of oxaliplatin. They sent me to a jaw specialist to make sure there wasn’t something else going on. I spent the rest of my treatment switching back and forth between morphine and oxycodone because the pain was so horrific.

On top of the nausea and hair loss, the cold sensitivity was bad. I like my drinks either really hot or cold. I don’t like lukewarm drinks. Chemo, especially oxaliplatin, made everything taste like pennies and dirt. I’m a big water drinker and I couldn’t drink water because the taste would make me gag. I started drinking electrolyte drinks to mask the taste. I don’t like sugary drinks, but I needed to get fluids in me so I don’t end up in the hospital. You have to do what you have to do to survive, I guess.

I also developed bad neuropathy in my hands and feet, and that came on suddenly. I was doing fine, but by cycle 10, the pain in my feet started to get bad. I was having trouble gripping things. I couldn’t wash the dishes. I would pick something up and drop it.

When the CT scan results came back, they found something in my liver… they didn’t think the cancer had come back, even though my CEA was up to 5 or 5.5.

Post-Treatment Follow-Up

After they finished, they did my scan and didn’t notice anything, so they sent me on my way and said they’d see me in six months. I wanted to see him in three, but he said he didn’t think that was necessary. I said I did, so he scheduled me for a three-month visit, which ended up being fine.

During my six-month visit, my CEA went up to 2 and that was my first flag. My CEA was still perfectly normal, but my CEA had never gone above 1.7. When I had the appointment with my oncologist, I told him this was concerning for me and he said it was a little concerning for him too. It’s a little bit of an increase, but it could still be normal, so he scheduled a blood draw after four weeks.

In four weeks, my CEA was 4.6 and that was abnormal for me. It was still within the normal range because anything under 5 is still normal, but I thought it was concerning. He said we could do another blood draw in four weeks.

By this time, it was around July and he said I wasn’t due for my CT until October. I said I didn’t want to wait until then.

Relapse

When the CT scan results came back, they found something in my liver. They thought it was a lesion because they said cancer usually looks like billiard balls but this looked like a zucchini. At that point, they didn’t think the cancer had come back, even though my CEA was up to 5 or 5.5, so something was going on.

They did an MRI and the results looked more like cancer. When they did a PET scan, the results looked even more like cancer. The biopsy confirmed it.

He said, “It’s looking more like it could be cancer.” They hadn’t done the biopsy yet at this point. He said, “If it’s cancer, there’s only a 20% chance you’ll make it to old age. That’s what the statistics tell us.”

I needed a doctor who I felt was on my side. I needed someone who I felt was going to fight for me.

Reaction to the Relapse

I walked out, got in my car, closed the door, and broke down crying. I was done with this oncologist. This is a horrific journey in itself. I needed a doctor who I felt was on my side. I needed someone who I felt was going to fight for me. I don’t care what the statistics say. There’s always somebody that’s on one side or the other.

Looking at Statistics

When you get these statistics, they mean something to doctors and researchers, but they don’t mean anything to people personally because you don’t know which side of that line you’re going to fall on. You could have the worst diagnosis and still survive.

I didn’t want to hear the statistics not because I was blind to it but because I knew it didn’t matter to me. The doctors are guessing which side of the line I’m going to end up on and I don’t want to hear their guess. I wanted to know if my treatment was working and if not, what my next steps would be.

She noticed the lymphatic system near my kidneys was getting larger so they thought that there was cancer there.

Switching Oncologists

I went back to the oncologist from whom I got a second opinion and she’s fantastic. She’s the best decision I ever made. One of the first things she did was get all of my scan results. She called my former doctor, requested all of my scan results, and sent them to a couple of different specialists so they could look at all of them. My new oncologist is on top of it and doing CT scans every eight weeks.

She noticed the lymphatic system near my kidneys was getting larger so they thought that there was cancer there. My first oncologist hadn’t even looked at that and it was one of the first things she noticed. It confirmed to me that I made a good decision.

I have this bad luck of getting things that look favorable but don’t end up being favorable. When I had my relapse, they looked at it and said I had a single liver lesion, which isn’t common. At that point, I was still considered curable.

Relapse Treatment

FOLFOXIRI Chemotherapy

She put me on FOLFOXIRI (folinic acid, fluorouracil, oxaliplatin, and irinotecan). I did FOLFOX a few times, but it wasn’t shrinking, so they added irinotecan and it started to shrink.

I went back on the full treatment for six months with very low node shrinkage but with slow growth.

Side Effects of FOLFOXIRI

I was miserable on oxaliplatin. It was terrible. I was sick all the time. The neuropathy in my hands had gotten better, but my feet had gotten worse. I could still do stuff with my hands, but my feet are pretty bad. I also had cold sensitivity, like not being able to eat cold food. Breathing in cold air was like breathing in shards of glass. My oncologist said they didn’t see any shrinkage with oxaliplatin, so she decided to remove it.

I had treatment until February 2023. It was shrinking and looking good, but it wasn’t going away, so they wanted to do surgery to remove the lymph system that had cancer in it. They did an ablation on one spot.

My oncologist wanted to do the ctDNA test to see if I had circulating tumor DNA in my blood. Four weeks later, that came out positive.

She said they usually wait 8 to 10 weeks before doing the first scan post-treatment, but she wanted to go ahead and do an MRI six weeks after surgery. She wanted to make sure because it looked like there was residual cancer.

Unfortunately, my liver lit up. They did a PET scan and there are a couple of spots now. I went back on the full treatment for six months with very low node shrinkage but with slow growth.

The difference between immunotherapy and chemotherapy is like night and day.

Joining a Clinical Trial

I started with an immunotherapy clinical trial in December 2023. The difference between immunotherapy and chemotherapy is like night and day. I’m not sick and tired all the time, so I’m able to go out and do normal activities. I feel like I’m able to have more of a normal life. It’s been fantastic, but I’m still fighting.

This is why it’s important to have a doctor who’s on your side. As soon as my recurrence happened, she went ahead and signed me up for every single trial that they offered. She didn’t ask me because she knew that these trials could have a year’s wait list. She figured that wherever I was, at least I was on the wait list. If a spot opened up, we could have a conversation about it.

When it comes to treatment, you do have a say. Your doctor may have a recommendation, but you have a say in what your treatment plan is going to be. You can tell them if you want an alternative.

A lot of people are intimidated, so they don’t want to tell their doctor what to do. It’s important to remember that your doctor is working for you. Find someone who’s working for you. My oncologist definitely was working for me.

Future Treatment Plans

My cancer is still growing. At any time, I can say I want to try something different. My oncologist and I have had those conversations. Because I’m on a trial, it’s not going to last forever. Unfortunately, I can’t be on this for the next five years. Having been off chemo, I’m hesitant about going back to it. I wanted to find out if there were non-chemo options we could explore, so we’ve talked about other options that are on the table.

With cancer, a lot of times, people sit and suffer in silence so by the time symptoms start rearing their big ugly heads, it’s often in the advanced stages.

Words of Advice

Know your body and trust your body. If something changes and there’s no warrant for that change, talk to your doctor. Don’t talk to your friends. Don’t go to social media. For everyone else, it might be normal, but if it’s not normal for you, it does warrant a conversation with your doctor. If it turns out to be nothing, you’re not out that much. I don’t think any doctor’s going to be mad that you wasted their time coming to them with your concern. Get rid of that fear. Know your body and know what’s normal for your body.

If anything comes up abnormal, don’t be afraid to go to your doctor and advocate for yourself. Tell them you want to find out what’s going on. With cancer, a lot of times, people sit and suffer in silence so by the time symptoms start rearing their big ugly heads, it’s often in the advanced stages.

People ignore the early symptoms. Maybe they’re busy, maybe they’re afraid, but I think primarily it’s because people think it’s not a big enough issue to warrant seeing a doctor. If it’s not normal for you, speak up and say something. The best thing that could happen is they tell you it’s nothing. The worst thing that could happen is they tell you it’s something, but maybe they found it before it’s something big and problematic.

Thank you for sharing your story, Amy!

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Tiffany’s Stage 3A Ovarian Cancer Story

Post author By Chris Sanchez
Post date June 12, 2024
No Comments on Tiffany’s Stage 3A Ovarian Cancer Story

June 12, 2024

Tiffany’s Stage 3A Ovarian Cancer Story

Interviewed by: Taylor Scheib
Edited by: Chris Sanchez

33 year-old Tiffany is undergoing treatment for stage 3A ovarian cancer.

Tiffany was about to embark on a yearlong trip when she received life-altering news, a cancer diagnosis. Her diagnosis not only forced her to postpone her trip, but also convinced her to undergo IVF egg retrieval in order to preserve her ability to have children later on.

Tiffany is in the midst of her ovarian cancer treatment and, as of her interview, was steeling herself to undergo major surgery. But she has many reasons to be positive about her future. She shares her story with us to help others in the same situation.

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

Name: Tiffany L.
Diagnosis:
- Ovarian cancer
Staging:
- Stage 3A
Initial Symptoms:
- Severe bleeding after insertion of IUD
- Discomfort and pain after working out
Treatment:
- Chemotherapy: Carboplatin and Taxol
- Surgery: Total hysterectomy

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

Table Of Contents

Tiffany's Stage 3A Ovarian Cancer Story
Related Cancer Stories
- More Ovarian Cancer Stories

My biggest advice is to be really honest with yourself first.

Like, really checking in, are you feeling something or not?

Introduction

My name is Tiffany. I’m based in Austin, Texas. I’m 33 years old.

I love pole dancing, contortion, and I’m learning how to draw for fun, as well as watercolor in my free time.

I’ve been diagnosed with ovarian cancer, stage 3A.

Discovery and diagnosis

I was supposed to go travel abroad for a year in 2024, and was supposed to leave the first weekend of January. Didn’t want to carry a year’s supply of birth control with me, so I decided to get an IUD.

I had an annual exam at the gynecologist, just standard stuff, and then that was when I mentioned an IUD, and so we got that inserted. We did the normal stuff that you would do during the annual exam. The gynecologist didn’t find anything weird then.

At first, the IUD was fine, it wasn’t too painful or anything. About a week after it was inserted, I started bleeding like crazy.

I had my strings checked a month later, and that was okay, too, but I was bleeding a lot. It was like I was soaking through a heavy pad every hour or so. And so I just left it because it went away eventually.

But a couple weeks after the string check, I started bleeding a lot again, and I didn’t really stop bleeding until they took it out. I was having heavy bleeding, and then it would it would kind of slow down a bit.

It just went on for weeks. So that’s why I called them to double check to make sure it was okay.

I called them probably mid December or so. Because usually what happens is like, you call them and they just tell you, oh, it’s normal. It’s an adjustment period for the IUD, you’ll be okay. But I’m leaving in a few weeks. I need you to make sure this is okay before I go abroad.

So finally, they got back to me and they’re like, okay, we’re gonna do an ultrasound to check. I remember going in, I was like, I’m pretty sure this IUD is misplaced. I remember the sonographer going through everything. And then I looked at the screen and I saw this huge hole.

I can’t read the graphics, but I saw her face and I was like, what is going on? I’m pretty sure there’s something more than just this IUD problem. But she’s not able to tell me what’s happening because I don’t think she’s allowed to by law.

I almost was able to talk to the doctor right away, but then I actually had a work meeting, so I had to schedule it for I think the next day or something. I was just really anxious for 24 hours or so. And then the next day I went in and the doctor was like, hey, look, we found a gigantic cyst.

We don’t know what it is, the doctor said. I’m going to need to refer you to a gyno oncologist. Like I’m supposed to leave next week. Can I get an appointment right away? And she’s like, yeah, I’m gonna try to see if we can bump you up. And then she ran this blood test for the tumor marker, CA 1 25, that same day. So the new doctor can get all the results and stuff.

So I had an appointment I think the next week, right before I was supposed to leave. I was like, well, there’s a huge thing in me, regardless of it being cancer or not, I need to take this out. So I probably do have to postpone my trip. There’s no way, you know, this person can just take it out in a week. So, yeah, I postponed my trip.

In my head I was like, okay, maybe it’s just postponed for a few weeks or a month. Maybe I can head out in February or something, which is not a big deal. But by that time, I had already quit my job because that was the plan.

My last day of work was right before I was supposed to leave. It it just put me in a weird position because, I was like, well, I might leave soon anyway, so I guess it’s just like a month, I don’t need to get my job back. So I didn’t really bother with it. But also, it was just like a strange, in-between time where everything was up in the air.

So I went to the new doctor, the gyno oncologist. And she basically was like, I need to see an MRI. So I had to get that done the next week.

And then after that, the follow up appointment, she didn’t really say it was cancer or anything, actually, even though my blood work was over the chart, my CA 125 was like 4000 and the standard was like 35. So it was crazy high. But, different things can affect your CA 125, such as endometriosis, which I wasn’t diagnosed with. All I knew was that I had P COS. [Polycystic ovary syndrome (PCOS) is a hormonal disorder in reproductive-age women, causing infrequent or prolonged periods and elevated androgen levels.]

So when I talked to her after the MRI, she wasn’t definitive that it was cancer, but she wasn’t saying that it wasn’t either, because they don’t really tell you until they really go in there anyways. So she basically she knew that she had to take out the ovary that was attached to the tumor. But she asked me, if it’s cancer, what are your thoughts about having kids? Um, because if it’s cancer, usually they take everything out.

It took me a few days to get back to her because it was just so shocking to think about. We ended up deciding that we would keep the other ovary in there, even if it’s cancer, because we wanted to preserve my fertility and see if we could go through the I VF route.

Going into surgery, the doctor thought it’s probably borderline because it’s rare that someone in their 30s would have ovarian cancer. But, I mean, it could happen. She said that if it is borderline, then I probably wouldn’t need chemo. It ended up not being borderline.

What happened during surgery is that she took the tumor out with the ovary, and she said the tumor was hard to take out. It wasn’t like a solid tumor, where, she could just pick it up with the robot and take it away. It was mushy and weird, gross-sounding.

The surgery took five hours, I believe, which was way longer than I expected because, besides taking it out, she also had to wait for a biopsy to see if it’s cancer and then after it’s cancerous, she does surgical staging. So she would swipe samples of different areas of my pelvis. I think it was bladder, bowels, uterus.

She took the omentum out for biopsy to see if there’s any cancer cells there. So that’s also probably why it took five hours. I took up pretty much the rest of her afternoon, so I didn’t really see her until the next day. And that’s when she told me that, hey, it is cancer.

But we didn’t know the staging; we just know that it’s probably more than likely, more than stage two, based on what I saw in there, but not definitive. Two weeks later, during my post-op appointment, I got the report.

So the original report says there were cancer cells in the omentum. So that would put me in stage 3A. But there was another part of the report where they weren’t exactly sure where the origin site is for the cancer.

So they were suspecting that it’s either primary ovarian or possibly could be from the uterus or it’s synchronized cancer, because the type that I have was called an endometrioid ovarian cancer. That might come from endometriosis. So they are thinking that it could be synchronized, but for now they are treating it as a primary ovarian cancer.

So it’s like still not definitive in a way. A little strange because I think the staging changes depending on the primary side.

So if it’s ovarian primary, it’s like stage three, if it’s uterine primary and it’s in the omentum, that could put me in stage four. But then if it’s synchronized then it could be stage one for both. So it’s very confusing. The staging kind of tells you the prognosis, but then all the information data that they have are for like older women. So then it’s not like that information is for my population.

At this rate, like honestly, I don’t look at my prognosis because none of the data is very specific to my population.

So I went ahead and got a second opinion too, just because why not? Insurance covers it. And I got a second biopsy at MD Anderson. And the report came back the same.

So that’s a good thing, that it’s the same, I guess. Ultimately they’re not really going to be able to really find out exactly what it is until they take everything out.

Treatment plan

After the doctor told me about my ovarian cancer diagnosis, she gave me a treatment plan.

So I was going to be having three rounds of chemo, surgery to take everything out, and then three rounds again.

So the midway point for the surgery, they just wanted to get the chemo in me first, but because I already would have had three rounds of chemo by then, they might not be able to really biopsy enough. There might not be enough cancer cells there for them to find out what is really going on.

IVF

About a week after the report and discussing it with her, I started my IVF cycle, so I started freezing my embryos.

That wasn’t fun. It was a lot of injections, doctor’s appointments., and going back and forth, trying to get a discount.

My insurance didn’t cover the IVF cycle, so I had to look into different organizations that would provide discounts on the clinic. And there are discounts for cancer patients, I think in most clinics, at least mine did. And I was able to get help from Li vestrong and the H eart Beat program with Walgreens.

The Heart Beat program basically gave me all the medication for free, which was really helpful because the medication itself, it’s like $10,000. And then the Livestrong also helped with the medication as well. It was like a 20% discount on certain things through the clinic.

I think we were fortunate in a sense, because I know a lot of women, they have to go through multiple cycles to freeze 1 or 2 embryos. We were lucky in a sense that we only had 1 shot, just 1 cycle before chemo started. We were able to freeze 8 embryos, which was amazing.

The clinic helped. They were the ones who told me about Livestrong. And they were the ones who applied on my behalf for the Walgreens Heart Beat program.

I think the complicated part, at least with my clinic, it was more like I wasn’t really sure who should be doing what part of the application process. It might have just been a clinic issue, but they weren’t very clear on who is starting? Am I the one applying directly or are they doing it on my behalf? So I had to do a little bit of work in that regards. But ultimately they were the ones who found the programs.

My doctor was the one who referred me to this clinic, so it seemed like she already had a relationship with the reproductive endocrinologist. So before I even went on my consultation, she already knew what was going on.

In terms of figuring out financially, I think we were fortunate in a way, because we had saved up for a trip and so we already had that nest there. If it wasn’t going to cost like that, we would have just done it anyways.

My husband and I, this has been a lot of discussion between like having kids or not. He’s the one that really wanted the kids. I was more like, could be maybe. Maybe not. It was just like, okay, might as well do this because if we don’t do it, we might regret it later.

This is a little bit morbid. If I, you know, pass away in 2 years, I felt at least I left something for my husband—a part of me there for him.

So, the IVF process. The first appointment was just discussing the different options. So I had the option of just freezing the eggs or embryos. But you still have to go through the IVF process. It essentially means they’re just taking the eggs out, the embryo part comes later.

During the process, they would monitor your follicles to see how they’re growing. Usually they want you to start, I think, like day 1 or 2 of your period. Um, I didn’t. I was on a timeline, so it didn’t pertain to me But I also luckily had my period the first day I saw her. So it kind of worked out in that sense.

So the first appointment, the doctor would check to see how many eggs are already there. In a way it was fortunate I had PCOS, so I had extra eggs. Apparently, if you have PCOS, it’s better for the process because you have more eggs.

Once she thinks you’re ready, you will start doing your injections. I did two medications, on my abdomen. The first injection was just so scary because you guess your spouse or someone could help you, but I just did it on my own. The medication helps grow the follicles.

I only had one ovary to do this, for others they might have two. But for my one ovary, she saw like 18 or something on there already. So they’re trying to grow everything at the same time essentially with the medication, but they don’t want you to grow it so fast, your ovary will get too big and then you will get hyper stimulating ovaries, which will cause a lot of pain.

They want to monitor you, every other day or so with blood work to check your estrogen level and also ultrasound. So I had to go to the clinic every other day. They gave me a different medication to start, to kind of balance it out so it doesn’t overgrow.

And then after about ten days, they decided that it was time for the trigger shot. They’re checking the size of each follicle. They want them all to be as big as possible. I think I had three that were like 20mm or something, I can’t remember. And that was when they decided it was time.

So then I did the trigger shot, and then the day after, they did the egg retrieval. During egg retrieval, they put me under, and then the process took like ten minutes.

And then they woke me up and they were like, we took out 22 eggs or something.

Treatment

Chemotherapy: Carboplatin and Taxol

Right after, a week after IVF, I started chemotherapy to deal with my ovarian cancer.

I got a week break between IVF and the chemo cycle. And I went back to Jersey for a wedding.

Okay, so the chemo regimen I’m on, it’s carboplatin and taxol. My chemo regimen is every 3 weeks. I would say it’s only bad the first week, and then it’s pretty much back to normal the next two weeks.

I did so much research before, I feel like I already knew everything before I started. And also, before chemo, they did like a chemo teach where I met with one of the physician’s assistants and they gave me a binder of information. So I already had an idea of what to expect.

Side effects

In terms of side effects, I think the major one is the hair loss. That pretty much happened after cycle 1 and throughout cycle 2 as well. But I think after cycle 1, I was just so anxious, I was like, I’m going to shave it off anyways. Just get it over with.

When I was reading online, I wanted to know when my hair loss would start. And most people said it would start about the second week. So I thought, I wish I knew that because I remember after the first, for like a week, I was just obsessive about my hair.

I would wake up and be like, are you going? Are you leaving me yet? And then when it was still here, I was like, oh my gosh, maybe I’m one of those lucky people. I wish I would have known that it really would start like after the second week.

I was never too attached to my hair. Or at least I thought so. Some women love their hair and they want it to look a certain way. I guess if I cut it and it’s ugly, I didn’t care too much, would be upset for a minute, and then I’d be like, okay, it’s gonna grow back. You’ll be fine.

When my hair started falling off, when I started seeing strands of hair on my pillow, It was just horrific to see that much hair coming out. I did get a little bit emotional. I think because I didn’t have that much time to process everything. Just seeing the hair kind of hit me in the face a little bit.

And then I felt really concerned about how I looked like without hair. I wasn’t sure if I would still feel attractive or if my husband was still find me attractive.

Ultimately, when I shaved my hair off, I was I was kind of surprised that, I thought, I still look good without the hair. I went on a lot of shopping sprees, just for new styles and wigs and makeup stuff. So I think that kind of helped.

Right now, I have days where I’m like, I really miss my hair. Especially like when I go out and I see people with beautiful hair, I’m like, oh, I really miss having hair.

But then most of the other days I’m just like, oh, how would this look on me now? I feel like I get to play a little bit with a different style. And then sometimes I’m also kind of like, I wonder what style is going to stick after this is over. Maybe I’ll adopt some of these new things.

So other side effects have mostly been swollen hands. I’m also having a slight neuropathy, only on my index finger. Very strange. And then a little bit of brain fog, but that tends to fade away after the first week.

Surgery: total hysterectomy

So my next milestone in my ovarian cancer journey, I guess, is my surgery. That’s coming up on May 20th. I get 4 weeks in between surgery and chemo, which means I get an extra week to play.

So the surgery I’m getting will be a total hysterectomy. They’re going to be taking out my remaining ovary, my uterus, the fallopian tube that attaches to the ovary, and my cervix as well.

I am incredibly anxious about it, because once they take out that ovary, that puts me in surgical menopause. And for women that are in forced menopause, I’m high-risk later on for osteoporosis as well as heart disease.

Not to mention, I’ve been reading a lot of other women’s experiences that are around my age, mostly breast cancer survivors. It sounds like there’s like a thing called vaginal atrophy that will happen or might happen as well.

Also, all the other stuff that comes with menopause, like hot flashes. I’m very, very scared just about what might happen.

Also they say that sometimes you don’t get those symptoms right away. So it’s not like I’m gonna wake up and it happens. It might take a few weeks before it happens.

They haven’t really talked to me about post-surgery. I just know I get a 4-week break and then I go back for chemo, but I do believe it’s the same chemo.

… don’t brush away that little voice that’s telling you something is probably wrong.

Shifts and learnings

Support

I felt like because of my ovarian cancer situation, everyone was extra nice to me. I would say I’m very fortunate, because everyone is being so supportive.

My mom lives in Jersey and flies here every cycle to help me out, and my husband has been very supportive, too. My friends like giving me rides and everything, too.

I think it’s going pretty well for what it is.

Realizations

So when I look back, I do feel like I had the symptoms of ovarian cancer, I definitely ignored them. I do crazy workouts, so, yeah, I’m going to be like, there’s some tightness there or I just kind of brushed it off. but when I look back, I was kind of in pain.

I was remembering how there were days after I trained and I would be like, wow. Training really hurt today. And I really don’t want to do this post because it’s putting a lot of pressure in my abdomen and it’s really pretty uncomfortable. But I just brushed it away.

And so I think that if I did not get that IUD, I think it would have gotten me eventually, Because I’m young and healthy. I didn’t think of it as anything. I mean, I didn’t really bring it to the doctor or anything, but even, like, with the whole IUD thing, I felt like I had to really push for them to, take a look at it. And so, it is very important, don’t brush away that little voice that’s telling you something is probably wrong.

I think it’s mostly realizing, this sucks, but I still get to do so much cool stuff later on. Hopefully.

It sucks that I didn’t get to travel, but after this, maybe I can I can travel again, but it’s gonna look a little bit different than I planned because I’m not going to be able to just leave for a year now because of all the monitoring that they do. Kind of realizing that I’m still going to be able to see everything.

But I honestly think what has really gotten me through this is just me on the pole. Because I’m still able to pole dance, and contort, which I don’t understand how sometimes. So that has been pretty incredible, very helpful as well. Like for my mental health, too.

But I think what shifted in the way I’m thinking about it is to just appreciate what I can do, versus going after certain things and being frustrated with it. So I kind of see it in like a new perspective. Oh, I just took a class, and then I never looked back. Yeah.

Pole dancing is like a challenge. I love it because as long as you put the work or the training, the time into it, you will see results. And it’s like a way to express yourself in whatever way you want it to be.

So it doesn’t have to be sexy. It could be like emotional. It could be very athletic or just like, whatever you want. And I really love it for the art form and also for the physical challenge. And also the pole community is incredible. I made so many friends off of it, and it’s just a great place.

Advice

My biggest advice from everything that I’ve learned in my ovarian cancer journey is to be really honest with yourself first. Like, really checking in, are you feeling something or not? Even if the doctor thinks you’re being a little too much, just push them to do something because you never know.

And then really do your research before going to the doctor, because, hopefully you have a good doctor, but, if you don’t, you have the knowledge to back up what you are suspecting. And then be very assertive as to what you’re asking them for.

I would say something like, hey, I have a concern with this. Can we do a scan or something, instead of having them lead the way? You kind of want to almost lead the conversation instead.

And then also be honest with them as to what you’re feeling, too, because I think sometimes people brush away symptoms because they’re scared of what it could be. It’s better to know what it is and deal with it earlier versus later.

Thank you for sharing your story, Tiffany!

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Share your story, too!

Bella Martinez

Courtney, a high school English teacher from Spokane, experienced symptoms such as fatigue and blood in her stool that led her to suspect she had colon cancer. Despite initial dismissals from multiple doctors due to her age and lack of family history, Courtney persisted in advocating for herself, ultimately undergoing a series of tests, including colonoscopies and scans, which confirmed her suspicions. Diagnosed with stage 3A colorectal cancer, Courtney underwent surgery to remove the tumor and lymph nodes, followed by chemotherapy as a precautionary measure.

Throughout her treatment journey, Courtney faced various challenges, including side effects from chemotherapy such as hand-foot-and-mouth sores and neuropathy. Despite these obstacles, she pushed forward, continuing to teach full-time and engaging in physical therapy to regain her strength. Three years into remission, Courtney emphasizes the importance of self-advocacy, listening to one’s body, and pushing for answers, especially when faced with medical dismissals or ambiguity. She encourages others to trust their instincts, seek support from loved ones, and persevere in navigating the healthcare system to ensure proper diagnosis and treatment.

Courtney shares her stage 1 colorectal cancer story

Name: Courtney H.
Diagnosis (DX):
- Colon Cancer
Staging:
- 3A
Symptoms:
- Blood in stool
- Fatigue
Treatment:
- Surgery
- Chemotherapy
  - Capecitabine
  - Oxaliplatin

Courtney shares her colorectal cancer story timeline

Advocate for yourself, know your body, listen to your body, and keep pushing until you find answers.
Courtney H.

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

Table Of Contents

Symptoms

Tell us about yourself

My name is Courtney. I am a teacher. I teach high school English – specifically honors 9 English and mythology. I am a big lover of reading. I like to play outdoor volleyball, garden, and explore. I live in Spokane, in the Pacific Northwest. It’s so beautiful. We have four seasons and lots of activities and different things to do. I like to spend time with my niece and nephew.

What were your first symptoms?

I took an anatomy and physiology class in college, and one of the only things I remember from that was that the professor said, “Most often when you have internal bleeding of some sort, it is your body’s inability to heal itself, and that usually comes in the form of a tumor.”

What had happened was I had gotten a teaching job in Othello, where I grew up, and I moved down there. This was August of 2020. I was a very busy new teacher. I was the head cheer coach for a cheer program. I worked a lot of jobs in grad school, and so I just was very used to being on the go all the time and having a busy and packed schedule.

I knew I was sick. I knew I had colon cancer, so I just kept pushing.

When I moved to Othello, I started showing one symptom – I had blood in my stool, and I instantly knew. I knew instantly that I had colon cancer. Moving down to Othello, I had to get all of my records and everything transferred down there, including all my medical stuff. So I wasn’t able to go in and see a doctor until October. My symptoms kept progressing, and I just knew when that started happening. I was trying to find somebody that could help me find the exact diagnosis. The answer.

Did you have any additional symptoms?

Just blood in the stool and fatigue. My friend’s mom, who’s a nurse, did a blood test on me and she said I was very anemic. What we ended up finding out when they had taken the tumor out is the blood flow was feeding the tumor, and that’s why I was so anemic.

Colorectal symptoms included fatigue and blood in stool

Colonoscopy

Experiencing medical gaslighting

The first general practitioner doctor I went to, he dismissed all my symptoms and said, “There’s nothing wrong with you. You’re thin, you don’t have a family history. You just need to make some dietary changes.” I was like, “Well, I’m going to keep trying to find answers.” It was in the middle of COVID, so everything was pushed back. Then symptoms kept getting worse. When I came home for Christmas break – home was Spokane – I saw a different doctor and it was the same thing. He spent about an hour with me, ran some tests, dismissed all my symptoms, but I knew I was sick. I knew I had colon cancer, so I just kept pushing.

The first doctor in Richland, he actually had put in a referral for me to see a GI specialist. I was able to see a GI in January of 2021 and [experienced] the same thing. She dismissed all my symptoms. Finally I said, “Listen, this isn’t about you being right or me being right. This is about figuring out what’s wrong. You’re speculating and I’m speculating.” They were all saying, “We think you have Crohn’s or diverticulitis, diverticulosis, or a bleeding hemorrhoid.”

Courtney was raised to listen to her body and to advocate for herself

One of the greatest skills that my parents ever taught me was the ability to advocate for myself and to know your body.

I said, “No, I think that I’m sick. What can we do?” She said, “Well, we can give you a colonoscopy. You’re too young and they’re very expensive.” I said, “Well, I’m a teacher. I have great health insurance. We need to do this. I think it’ll give me peace of mind knowing that we have tried everything.”

Receiving a colonoscopy

Months later, she did a colonoscopy and found the tumor. That was February of 2021. That whole month and a half that I went through 9 different tests. I did 3 colonoscopies, a sigmoidoscopy, 2 CAT scans, a PET scan, and an MRI. There’s another one I did but I can’t remember the name of it. All of those tests brought me to the diagnosis. Now what are we going to do? What’s the plan of action going to be? I got a team together.

What tests did the first doctors do?

Doctors assumed Courtney was healthy and hesitated to do extensive testing

He did a blood test and some general stuff. He felt my stomach to see if I had any lumps or bumps. Then he went through and looked at family history. Obviously, I don’t have a family history of it. He said, “You’re thin, you’re not pre-diabetic.” I was in Richland, Spokane, and then I went to Kennewick. So three different cities, three different doctors. The doctor in Spokane pretty much did the same thing. They didn’t do anything extensive because you can’t really diagnose it unless you actually get a colonoscopy.

The problem was, neither one of those two doctors could perform that. Then they just dismissed my symptoms. They said, “Well, we’re not going to put in a referral for you to have a colonoscopy because we don’t think, from our experience, that you have it. I really had to beg the GI specialist to give me one.

We did a blood test with the first doctor and he didn’t see anything abnormal. Then the doctor in Spokane didn’t really see anything abnormal. But my friend’s mom, who’s a nurse, knew what to look out for because I told her what was going on. She did her own test and said, “You are severely anemic. Something’s going on.”

Did your insurance cover the cost of the colonoscopy?

I paid a little bit out of pocket, but it was mostly covered. The problem was, and this is something that I think a lot of people run into when they’re getting tests done, especially a colonoscopy or sigmoidoscopy. My insurance company did not want to pay for the right type of drugs. I didn’t know that. I didn’t hear the confirmation. They actually had to tell my parents, and it took 8 hours for the drugs that they gave me to wear off. So I actually didn’t find out about the tumor until the next day. My parents waited to call because they tried to talk to me after the procedure and I was just bonkers.

Surgery

The importance of advocating for yourself

They dismissed the symptoms because I didn’t fit the profile, but one of the greatest skills that my parents ever taught me was the ability to advocate for myself and to know your body. I just knew I was sick. I had that feeling in my stomach. Sometimes science can only go so far, and sometimes you have to put it in your own hands and keep pushing for it. It was a unique set of circumstances, because when I did my colonoscopy, COVID cases were very light, so I was able to go in and get a colonoscopy. When I had my surgery, COVID cases were really light, so they didn’t push my surgery back. These were just perfect little windows where things ended up really working out in my favor.

Formulating a treatment plan

Because I didn’t have the right drugs, she couldn’t finish the colonoscopy. I would have to come back 4 days later and do another one. I came back that Friday. I had [the first one] done on a Monday, came back that Friday, and everything else looked clear. She said, “I’m 98% sure that this is a cancerous tumor. We’re going to send it off to have it biopsied.”

It took two weeks to get back. The next conversation, I said, “I know a surgeon who saved my dad’s best friend’s life. He had stage 4 rectal cancer and he’s been in remission for 20 years. I want that guy.” She was going to put in a referral for somebody else. I said, “No, I want this guy.” Then everything started to move, all the tests.

After all of the tests came back – because the original plan was to do some radiation, 6 weeks of chemo, and then do surgery after the MRI, – the radiologist called me and said, “This is miraculous, but your tumor is a lot smaller than we thought, so we’re going to operate. Nothing else is lining up in your body, so we’re just going to go for it and operate.” So they did.

Describe your surgery

Dr. Holbrook went in and did a lower anterior resection and took out part of my colon, 21 lymph nodes, and my appendix. He said, “I had a stage 4 appendectomy patient who’s 17 years old last week. I just thought I’d take your appendix out.” He spent about 4 hours in surgery. He just retired last year, but he’s one of the best in Spokane. I trusted him.

»MORE: Cancer Surgery Treatments

Did you have to prepare for your surgery?

The prep work was I had to go onto a liquid diet about 48 hours before. They gave me some things that they wanted me to take prior. After I was in the hospital for about 4 days, I had a series of things that I had to go through to get out of there. I had round the clock bloodwork. They would come in at 2 a.m., they’d come in at 6 a.m.. They were checking fluids and different things like that.

As far as the procedure, he just went in. He didn’t tell me how much of my colon he took out, but he took out the sigmoid region of the colon. That’s the end. He took that part out and did the lymph node pluck. After that, I was on a liquid diet for about 3 weeks, giving my bowels a break and allowing things to heal. He was able to go in and do it minimally. The incision where he went in was about this big. He was able to go in right underneath my stomach and do it.

Chemotherapy

What stage were you in?

We got a really good prognosis back. I had a stage one tumor. There were just a few little cancer cells that had broken off and gone into one lymph node, so I had a really good prognosis.

Preserving fertility before starting chemo

I had my 3 week clearance from surgery, and then I actually harvested my eggs, and then I did chemo. It was boom, boom, boom. My body had been through some things. Harvesting your eggs is quite an interesting process. I didn’t know this. When you go through and you do all the things, they monitor you, they take your temperature, they do all the things.

The day before my procedure, they did a COVID test on me and it came back positive. I didn’t know I was asymptomatic. Seattle Reproductive had to fight with Seattle to advocate to harvest my eggs because it’s a $15,000 procedure. They ended up saying, we’re going to suck it up, risk it, and do her procedure. Then I started chemo right after I was cleared from COVID.

»MORE: Fertility After Cancer Diagnosis

Beginning chemotherapy

I didn’t have to do chemo because of my prognosis, but my surgeon and team recommended that I do it as an insurance policy. I was prescribed 2 different types. I had an infusion chemo which entered through a port and a pill chemo. I would do one infusion every 3 weeks. Then I was on pill chemo for 2 weeks at a time and I’d get a break at the end of it.

»MORE: Chemotherapy FAQs & Patient Stories

Chemo Side Effects

Which chemos were you on and did you have side effects?

Capecitabine. The infusion chemo was called oxaliplatin. I had side effects with each. With capecitabine, I had hand-foot-and-mouth, where you get really bad sores everywhere. The other chemo was oxaliplatin. It’s a platinum chemo. It had some really strange side effects. You couldn’t touch anything cold. You couldn’t ingest anything cold. I couldn’t drive in my car with the AC on or it could close my throat. Everything had to be room temperature or hot.

Courtney discusses her chemo side effects

It was in the middle of the summer, so one of the biggest issues I ran into was I was dehydrated a lot. I was hospitalized 2 different times for dehydration which was scary. I lost a lot of weight. I think I lost about 25 pounds. I tried to eat when I wasn’t hungry. I had to watch what I ate. They tell you you can’t have raw fruits and vegetables while you’re on chemo, which is so weird because you should be eating healthy foods, and they said to eat what I could.

The first two days after infusion chemo and pill chemo, you’re the sickest, you’re nauseous. It’s really, really hard to get up and move around. With oxaliplatin, like I said, it’s a platinum chemo so it causes neuropathy. You have a lot of tingling going on in your body. It got to the point where my eyes were affected by it. I could taste it in my mouth. It was very all-consuming throughout my body.

Stopping oxaliplatin

I did my own research about my particular prognosis and I decided to stop oxaliplatin after 4 rounds. That’s the infusion chemo. A lot of patients push past that, and there are some patients that end up disabled from doing that chemo. I did not want to do that. I didn’t want to risk that. It was making me so sick that I could barely eat.

Did anything help alleviate your chemo symptoms?

When I was dehydrated, I would go in and get pumped with fluids. That helped. I did take Zofran to help with the nausea. You can’t be in the sun either when you’re on chemo. You have all these things that you can’t do.

»MORE: Managing Nausea and Vomiting from Chemotherapy

The best thing that helped with the side effects was to get my mind off of it.

I think for me, the best thing that helped with the side effects was to get my mind off of it. I taught full time while I was on it. That was my choice. I didn’t want to lay in bed every day and dwell on it. That’s just my personality so I decided that I was going to work and let that be the thing that would help get my mind off of it. I did oxaliplatin for 3 months and capecitabine for 6 months.

When I went back to school to teach, I did physical therapy and that helped a lot. It helped me build up strength because I had lost so much muscle mass and lost so much weight and it helped with getting through those days.

Courtney worked through chemo treatments to stay distracted from the side effects

Reflections

How long have you been in remission?

I am almost at the 3 year mark of being in remission. I count it as April. My oncologist counts it as November because that’s when I finished chemo, but I think that the surgeon got everything.

How often do you get scans and do you experience scanxiety?

I don’t think that it ever really leaves you. I think that it stays with you.

I just hit the 2.5 year mark, so now I go every 6 months. I think that’s one of the hardest parts. I was joking with a friend that I’m a part of an exclusive club now because it doesn’t really ever leave you. With scanxiety, I just do my best to just try and stay positive. It’s always quite exhausting because it’s a 4-day process – blood work, scan, and meet with your doctor.

My aunt is a phlebotomist, so she’s always encouraging, giving me tips on how to stay positive and hydrate, make sure you’re ready to go. But it is a real thing, and I honestly don’t think that it ever gets any better. I think that you learn how to manage, how to live with it. The farther out that you get, you feel better. But I don’t think that it ever really leaves you. I think that it stays with you.

What advice do you want to share with cancer patients?

Courtney encourages everyone to advocate for themselves

Advocate for yourself, know your body, listen to your body, and keep pushing until you find answers.

You need to advocate for yourself and you need to be able to listen to your own body. Science only goes so far. Knowing, understanding, and listening to your body is really important. Because if you’re sitting in front of this doctor that doesn’t know you, you’re just a statistic. They’re trying to see where you fit, and if you don’t fit the category, you don’t fit the profile, of course they’re not going to suspect anything.

I also think that you have to hold on to your faith and keep pushing through roadblocks and things that are in your way. You just have to keep going until you find the answers that you really desire to have. For me, that was, I’m sick of hanging out in ambiguity. I know I have it. You are speculating, but that’s why we have science. That’s why we have these things. We shouldn’t be profiling people based on their age or the way that they look. We should be listening to the patient and to their concerns.

Advocate for yourself, know your body, listen to your body, and keep pushing until you find answers. That’s why I’m alive and well today, because I advocated, and I continued to push until I got the answers that I needed. I don’t blame any of them. They’re doctors, they’re human, but I do think that they need to listen to patients better. I think that they need to listen to their patients, listen to the concerns that they have, and really do a better job of putting something in place that is going to help. Help eliminate this ambiguity. For people that may not feel as comfortable to advocate, you just have to remember that you know your body. So even if it’s something that’s totally foreign, talk to somebody about it and try and find those answers that you are desiring to look for.

Palbociclib Side Effects

December 13, 2023

Palbociclib Side Effects & Patient Stories

Written by:

Chris Sanchez

Palbociclib, commercially known as IBRANCE, is a treatment for a specific kind of metastatic breast cancer, or breast cancer that has already spread to other parts of the body, known as HR+/HER2- mBC. Palbociclib may be able to renew patients’ hope and offer them a greater sense of possibility.

Are you a HR+/HER2- mBC patient who is considering taking palbociclib, or is about to start taking it? In this article, we provide key information about palbociclib to help you and other patients prepare to take this therapy, including what to tell your doctor before you begin; also tell you about the side effects you might experience when taking it; and provide links to a couple of real-life patient experiences shared by patients who have used palbociclib as part of their cancer treatment.

Table of Contents

Palbociclib Side Effects & Patient Stories

What is palbociclib, and what is it used for?

Palbociclib is a kind of cancer medicine called a CDK 4/6 inhibitor that’s prescribed for a specific type of metastatic breast cancer known as HR+/HER2- mBC. Pfizer, IBRANCE manufacturer, describes it as a “first-of-its-kind treatment” for patients with this kind of cancer.

Is palbociclib chemotherapy?

Palbociclib isn’t a traditional form of chemotherapy. It’s a targeted therapy that must be taken in combination with certain hormonal therapies like aromatase inhibitors and fulvestrant and which is aimed at specific kinds of breast cancer cells.

“My first line of treatment in 2017 was IBRANCE, which was approved by the FDA in 2015. I was able to be on a medication that had just recently been approved by the FDA, which is huge. That line or that class of drugs, the CDK4/6 inhibitors, has really changed the landscape of breast cancer. Starting in 2015 with IBRANCE, and then there’s now a fourth one that’s being added to that class. People are living a whole lot longer with far less side effects.”

Abigail, Stage 4 Metastatic Breast Cancer

What are CDK 4/6 inhibitors?

CDK 4/6 inhibitors are cancer treatments that disrupt how breast cancer cells divide and multiply. To do so, these treatments target specific proteins called cyclin-dependent kinases 4 and 6, or CDK 4/6 for short.

CDK 4/6 proteins are found in both healthy cells and cancer cells, and control how quickly these cells grow and divide. In breast cancer, these proteins can cause cancer cells to grow and divide wildly. CDK 4/6 inhibitors target these proteins with the aim of slowing down or even stopping cancer cells growth altogether. This is why palbociclib and the other CDK 4/6 inhibitors, KISQUALI (ribociclib) and VERZENIO (abemaciclib), are known as targeted therapies.

How and when is palbociclib used?

Palbociclib is prescribed for hormone-receptor positive (HR+), human epidermal growth factor receptor 2-negative (HER2-) metastatic breast cancer (mBC)—in short, HR+/HER2- mBC. This is the most common subtype of metastatic breast cancer, representing approximately 60% of all breast cancer cases.

The growth of hormone-receptor positive breast cancer cells is supported by one of both of the hormones estrogen or progesterone. And HER2-negative cancers test negative for the HER2 protein, which is another protein that can promote cancer cell growth.

“I’m on a medication called IBRANCE — that’s three weeks on, one week off — and that’s what knocks down my immunity. [Sometimes], I have to take an extra week off because my immunity is too low to continue that one so it’s a little bit of a dance with that one. It’s all working.”

Bethany, Stage 4 Metastatic Breast Cancer

Palbociclib is always prescribed in combination with hormonal therapies such as aromatase inhibitors and fulvestrant. Palbociclib is available in pill form and is taken daily, by mouth and with food.

Palbociclib is given out in four-week cycles, the last week of which is a week-long break—which means that you’ll need to take it for 21 days straight, followed by a 7-day off-treatment period, to comprise a complete cycle of 28 days.

How much does palbociclib cost?

The cash price for palbociclib, using an online coupon, can be $13,000 to $13,500 for a 21-day supply. Most people won’t be paying this price, though—this is the cash price only, with a discount coupon, and is not valid with insurance plans. The prescription cost may be lower for those who have commercial insurance.

If you’d like to explore getting a copay card or copay assistance, Pfizer can help. The Pfizer Oncology Together Co-Pay Savings Program may help eligible, commercially insured patients save on their out-of-pocket costs. Pfizer Oncology Together can connect patients who are uninsured, underinsured, or have government insurance with resources that may help pay for a prescription.

Palbociclib isn’t currently available in a generic version.

How effective is palbociclib?

Pfizer has shared the results of clinical trials that tested IBRANCE in combination with the aromatase inhibitor letrozole (more than half of the patients involved in the trial saw their tumors shrink in size, versus 44% who took letrozole and a placebo), and in combination with the hormonal therapy fulvestrant (24.6% of these patients saw their tumors shrink vis-a-vis just 10.9% of those who took fulvestrant and a placebo).

What to expect when taking palbociclib

When taking palbociclib, side effects can be expected—some of which are serious. Be sure to share any side effects you may experience with your doctor immediately. Your doctor may interrupt or stop treatment with it completely if any of the symptoms you experience are severe.

Palbociclib side effects

“My first line of treatment after I finished chemo was IBRANCE and letrozole, and I was able to be on that for 2 years.

“There were very low side effects. Most targeted therapy affects the bone marrow, so we had to watch for low white blood cells, or neutropenia. I was always immunocompromised and having to be careful. The main side effects were the blood counts and some fatigue.”

Abigail, Stage 4 Metastatic Breast Cancer

Palbociclib side effects can include but may not be limited to the following:

Low white blood cell counts (neutropenia) are very common when taking palbociclib and may lead to serious infections. Your white blood cell counts will need to be checked before and during treatment. During treatment, you’ll need to tell your doctor right away if you experience any symptoms of neutropenia or infections such as fever and chills.
Palbociclib may cause lung problems (pneumonitis) stemming from severe inflammation, including chest pain, cough with or without mucus, and trouble breathing or shortness of breath.
Low red blood cell counts and low platelet counts. Make sure to inform your doctor immediately if you bleed or bruise more easily, feel dizzy or weak, and/or experience nosebleeds and shortness of breath while on treatment.
Possible allergic reactions to palbociclib, including hives, difficulty breathing, and swelling of your lips, tongue, face and/or throat.
Fertility problems in male patients.
Tiredness.
Nausea.
Sore mouth.
Abnormalities in liver and blood tests.
Diarrhea.
Hair thinning or hair loss.
Vomiting.
Rashes.
Loss of appetite.

What to tell your doctor or healthcare provider before starting treatment with palbociclib

Before starting treatment, you’ll need to inform your doctor about all your medical conditions, including:

Signs and symptoms of possible infection, such as fever or chills.
Liver or kidney problems.

You’ll also need to tell your doctor if you’re pregnant or planning to get pregnant, or, if you’re male, have a female partner who can get pregnant. Palbociclib can harm unborn babies.

Female patients who can become pregnant will need to take effective birth control for the duration of their treatment and up to three weeks after its final dose.
Male patients with female partners who can become pregnant will need to use effective birth control during treatment and for at least 3 months after taking their final dose.

Lastly, it would be good to determine if you’re allergic to palbociclib before you start taking it.

Foods to avoid while on palbociclib

Do not eat foods containing grapefruit or drink grapefruit juice while on this treatment. According to Pfizer, they may actually increase the amount of palbociclib in your bloodstream.

Stories of patients taking palbociclib

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 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.

Symptoms: None; caught at routine blood work
Treatment: Stem cell transplant

Sources

About IBRANCE

U.S. Food and Drug Administration (FDA)

BreastCancer.org

National Cancer Institute (NIH)

Tags breast cancer, breast cancer article, HR+/HER2- mBC, IBRANCE, metastatic breast cancer, Palbociclib, side effects, targeted therapy

Cancers FAQ Side Effects Side Effects

Nausea and Vomiting: Managing Chemo Nausea

Post author By Kelsey Riddle
Post date December 18, 2021
No Comments on Nausea and Vomiting: Managing Chemo Nausea

Managing Nausea and Vomiting from Chemotherapy

Table Of Contents

Why does chemo cause nausea and vomiting?
Who experiences chemo-induced nausea and vomiting?
How are nausea and vomiting treated?
Are there any natural remedies for nausea or vomiting?
Cancer Treatment Side Effect Articles

Nausea and vomiting are two of the most feared chemo symptoms, and for good reason — not only do nausea and vomiting feel downright horrible, they can keep you from getting the nutrients and calories your body needs to help you heal during chemo.

While modern-day chemo patients are often given a list of anti-emetics (anti-nausea medications) a mile long, breakthrough nausea can still sometimes occur.

Read on to find out why chemo causes nausea and vomiting, tips and tricks for staying on top of the nausea, and what to do if you have breakthrough nausea or vomiting.

Why does chemo cause nausea and vomiting?

Chemotherapy is typically given through the bloodstream, so why does it cause nausea or vomiting? According to the American Cancer Society, chemotherapy triggers an area of the brain that then sends signals to your esophagus, stomach, and intestines. This then activates a reflex pathway that causes nausea and vomiting.

There are often other factors surrounding cancer treatment that can contribute to nausea, including anxiety, other medications, and the cancer itself. Some people will also experience anticipatory nausea or vomiting, which occurs when a person’s body reacts to a sight, smell, or experience where they’ve felt ill before. If your brain associates the chemo infusion room with nausea, you might feel ill just thinking about walking in the door.

Who experiences chemo-induced nausea and vomiting?

Anyone undergoing chemotherapy might experience chemo-induced nausea and vomiting. According to the Mayo Clinic, there are some risk factors that may raise your chances of getting sick during or after chemo, including:

Being a woman
Being younger than 50
Having a history of motion sickness or nausea
Having anxiety
Previous experience with morning sickness during pregnancy
Having a history of not drinking alcohol

If any of these risk factors applies to you, you may need additional help controlling your nausea or vomiting during chemo.

The biggest and most known is nausea. After my first infusion and into my last, I would have about 72 hours of extreme nausea. This was day-consuming nausea. I would wake up with it, only able to eat a few things, but it did go away. Some people are not as fortunate to have that nausea go away naturally.
I was able to get back into full appetite and energy by about week two after each infusion.What helped me the most with my nausea was having some exercise. That seems counterintuitive, but it stimulates the appetite, gets you out in fresh air, and gives some movement for the body.
Nina L. (DLBCL, Stage 4)

I would go home and rest, but I would feel great. In the middle of the night or the next day I would just get so nauseated, be so sick.
Jodi S. (Metastatic Ovarian Cancer)

How are nausea and vomiting treated?

Ever since chemotherapy usage became widespread in the 1960s and 1970s, doctors have been looking for ways to control the associated nausea and vomiting. One of the earliest drugs used to control nausea and vomiting in cancer patients was the steroid dexamethasone (nicknamed “dex”), which is still one of the most common prescribed anti-nausea drugs today.

Every decade, researchers discover more and more drugs that can help cancer patients control nausea and vomiting. Some drugs, like Zofran (ondansetron), were specifically developed to treat nausea and vomiting in cancer patients. Other drugs, like Ativan (lorazepam), were developed for other uses and were later found to also be successful at keeping nausea at bay. You may have taken some of the drugs your doctor prescribes you to control nausea during chemo for other uses in the past.

Before starting chemotherapy, your doctor should give you a list of drugs to have on hand to prevent nausea and vomiting. Many patients are prescribed a steroid like dexamethasone for a few days after each chemo session alongside other drugs like Zofran, Ativan, prochlorperazine, olanzapine, or medical cannabis. Your drug list may include instructions on the order in which you should take the drugs.

While some patients might be able to control their nausea with fewer medications, check with your doctor before cutting any medications out of your regimen. It is best if you stay ahead of the nausea and vomiting rather than under-medicate and then attempt to play catch-up with your medication after you’ve already started vomiting.

While the nausea continued, it did get better as I began to take the anti-nausea meds more proactively. I also never had mouth sores again after she prescribed medication to prevent them. They weren’t a guarantee, but thankfully they worked for me!
Stephanie C. (Primary Mediastinal B-Cell Lymphoma, Stage 3, Double Expressor)

They had given me anti-nausea medications, but I felt fine the day before, so I didn’t take them. I learned very quickly that even if you’re not feeling nauseous, you should still take the medicine.
Stefanie H. (Invasive Ductal Carcinoma, Stage 3)

My doctor kind of punched me in the arm, said, “Don’t be a cowboy. Take the [anti-nausea] medicine.” He’s right. I take it so you don’t have the symptoms, but you’d still have that feeling in your stomach.
Richard P. (Relapsed/Refractory DLBCL)

I really feel like I could take the anti-nausea medication and I learned after the first one, I’d just take it that night when I went to bed, take it when I wake up, just keep on that regimen. It really kept the nausea down.
I only threw up a few times during the whole process. After the first time I was in a lot of pain, I always just took the meds beforehand and just kept taking them until I felt noticeably better because it was so much easier to stay on top of it than to get behind.
Jodi S. (Metastatic Ovarian Cancer)

Anti-nausea drug regimens for chemo vary depending on the type of cancer, type of chemo, institution or doctor, and your individual tolerance. Always check with your doctor before combining medications or leaving a medication out of your daily regimen.

They’d start [my chemo] with anti-nausea medications. That would be for about a half-hour or so. Then an hour later they’d start the AC (Adriamycin, cyclophosphamide) which wasn’t very long, maybe two hours.
The first couple of days I remember feeling pretty good. I would even go work out to keep up my exercise during treatments. But then during Day 2 or 3, little bit of nausea.
They give you anti-nausea medications that I took. I remember just mostly being in bed those two days. I was also working part-time during this time so I timed it, I was able to time it so I’d have the five days – they say you won’t feel well – off and then I’d go into work on Day 6 or 7.
The second week, you feel pretty good, pretty back to normal. And then you start again. So it was usually about five days where I felt stomach queasiness. I remember not feeling like eating much.
Margaret A. (Invasive Ductal Carcinoma [IDC] & Ductal Carcinoma In Situ [DCIS])

Beth A. describes her 3-medication regimen:

The first drug is Zofran… If you’re not feeling any better from that, and that usually does the trick for most people, then you take Compazine which is prochlorperazine… If you’re really still feeling sick and nauseous, the last one is Ativan which a lot of cancer patients are on and take anyway for anxiety and different things. It helps counteract some of the dexamethasone side effects as well.
Beth A. (Relapsed Refractory Multiple Myeloma)

I had nausea, but it was manageable. I had three different nausea medications running 24/7. That was a suggestion from some other people, and it helped so much. I want to be that for others. That’s why I want to be open about my experience.
Scott C. (Multiple Myeloma, IgG Lambda, Heavy Chain, Stage 3)

It was three days of rest and a little bit of nausea. I actually only threw up once before dinner one time. Then it was gone.
Other people have had different experiences, but my care team definitely prescribed me all the anti-nausea medicine and antacids.
I think I had 12 prescription bottles on my bedside table at one point. There are fixes for the worst side effects, which are nausea and sleeplessness.
CC W. (Hodgkin’s Lymphoma, Stage 3)

For nausea, an amazing new FDA approved drug called Varubi (rolapitant) that helped suppress much of my nausea. This drug was used by our cancer center and it was one of the best things because it probably kept my nausea suppressed to 10- to 20-percent, though I got nauseous at the end of two weeks.
Helicon K. (Hodgkin’s Lymphoma, Stage 2A)

I take Zofran, which is a pretty common nausea medication. They have stronger stuff if it really starts to affect you.
Evan L. (Acute Lymphoblastic Leukemia [ALL])

Some people, like Bobby J., have trouble with the medications. If your anti-nausea medication is causing you to feel depressed or anxious, talk to your doctor about alternatives.

The worst side effect from the nausea medicines was it basically put me in a depression. I lied in bed, did not want to get up. There were three different medications they gave me. I’m not sure what the three were, but it caused me to go into depression.
They just called it a cocktail, and it was three different anti-nausea medicines. In Cycles 2, 3 and 4, I did not take the anti-nausea cocktail. I believe I took some Ativan.
Bobby J. (Mantle Cell Lymphoma, Stage 4)

They do give you anti-nausea drugs, and they give what they call pre-meds. One of them is Zofran. Dexamethasone was also one of my pre-meds, and those drugs really did a great job of controlling my nausea to the point where I essentially had close to a nausea-free chemo.
Luis V. (DLBCL)

I was given some medication for discomfort. When my anti-nausea medication stopped working (usually by Day 3 of chemo), I was given Ativan through an IV. Ativan helped with the nausea, but it made me not remember anything after I received the dose.
Donna S. (Primary Mediastinal B-Cell Lymphoma, Stage 1 to 2)

Are there any natural remedies for nausea or vomiting?

While you should make sure you’re taking your prescribed anti-nausea medication, there may be days when your anti-nausea medications don’t completely suppress your upset stomach. In those cases, natural anti-nausea remedies may help you control your nausea.

Ginger

According to the Mayo Clinic, ginger is clinically proven to reduce the severity of nausea for patients undergoing chemotherapy when taken in combination with standard anti-nausea medication. However, studies show that ginger taken alone doesn’t do much to help control nausea for patients undergoing chemotherapy. Ginger can interfere with some medications, so check with your doctor before adding this supplement to your diet.

Peppermint

Some patients find relief from nausea by smelling peppermint oil or sucking on a peppermint candy. Studies show that consuming peppermint can help with symptoms of irritable bowel syndrome, and that inhaling peppermint oil can help control nausea. Use an essential oil diffuser or roll-on for quick aromatherapy relief.

Cold liquids

Remember sipping Sprite when you were sick as a kid? Sipping a cold drink, such as ice water, Gatorade, or club soda, helps some patients control acute nausea. Cold liquids can help calm the nervous system, sooth the stomach, and prevent dehydration. Be sure to sip slowly if your stomach as bothering you to avoid triggering vomiting.

Citrus

Fruits such as lemon and lime have been shown to help prevent nausea in some people. If you’re feeling sick, try smelling some lemon essential oil or squeezing a fresh lemon into your drink. Check with your doctor before using citrus — some fruits, such as grapefruit, can make your cancer medications less effective.

Food

You may find that your stomach may be more sensitive when it is empty. If you’re feeling ill, try having a carbohydrate-rich snack like pretzels or cereal. If you’re prone to early morning nausea on the days after chemo, keep a granola bar at your bedside in case you wake up feeling sick.

For me, when I was nauseous, I found that it was my body needing something. Either I was hungry and didn’t know I was hungry, or I was thirsty and didn’t know I was thirsty. Maybe I was even sleepy and didn’t know I was sleepy. You’re on all this medication, and it throws your body out of whack. When I would get nauseous and it was too much for my anti-nausea medicine, it was usually as simple as drinking a glass of water or taking a couple of bites of a sandwich.
Caitlin J. (Invasive Ductal Carcinoma, Stage 2B)

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FAQ Side Effects

Chemo Brain: What It Is and How To Cope

Post author By Kelsey Riddle
Post date November 5, 2021
No Comments on Chemo Brain: What It Is and How To Cope

Chemo Brain: What It Is and How To Cope

April 13, 2023

Written by:

Kelsey Riddle

Anyone who has been through chemotherapy can tell you that chemo drugs don’t just wreak havoc on your hair and stomach — they can mess with your head, too, leaving you feeling like your brain is stuck in a cloud.

Maybe you’ve noticed yourself forgetting things you’ve always known, like the name of your sister’s dog or your best friend’s phone number. Or maybe you just feel like you’re thinking at half-speed, concentrating hard on the next thing to say while the conversation zooms by without you. Chemo brain is absolutely a real phenomenon, and it can leave cancer patients feeling hopeless and frustrated as they attempt to go to work, attend school, or interact with friends and family.

If you’re suffering from chemo brain, also known as chemotherapy brain fog, know you’re not alone. It affects people of all ages, diagnoses, and backgrounds. Read on to learn more about how chemo brain feels, how long it lasts, and how to combat it.

Table Of Contents

What is chemo brain?
How long does chemo brain last?
What can I do to help chemo brain?
How can I help someone with chemo brain?
Cancer Treatment Side Effect Articles

What is chemo brain?

Cancer-related cognitive impairment, or “chemo brain,” is the mental confusion and fogginess that many patients experience before, during, and after cancer treatment. Patients experience chemo brain in different ways. Some people say that chemo brain makes them feel “scattered,” reduces their vocabulary, and hurts their focus.

Up until recently, there wasn’t much research about the existence of chemo brain and its effect on patients. However, advances in cancer treatment mean that far more patients are living long, full lives, and doctors are placing greater emphasis on helping patients who experience this sometimes long-lasting side effect.

Who gets chemo brain?

Chemo brain affects people who have gone through cancer treatment, but the condition isn’t specific to any particular type of cancer. According to Dr. Arash Asher at Cedars-Sinai, about 75% of cancer patients experience chemo brain during treatment and one-third of patients report symptoms of chemo brain after their treatment ends. Chemo brain is even reported by patients who don’t undergo chemotherapy.

There are several aspects of cancer treatment that can cause brain fog and mental confusion, including:

Chemotherapy
Radiation
Prescription medications
Depression and anxiety
The cancer itself

There is no one cause of chemo brain.

What does chemo brain feel like?

People who experience chemo brain may feel a variety of different symptoms. Some people report forgetting words and names they’ve known for years. Others say the effects of treatment made it difficult to multitask or quickly perform tasks. Chemo brain symptoms range from mild forgetfulness to full-blown brain fog that can interfere with your life at work, home, and in social situations.

Here’s how patients described their experience with chemo brain:

Samantha S. buzzed hair experienced chemo brain after her treatment.

Chemo brain is such a broad term that people use, but for me, it was always really a combination of severe sadness and difficulty functioning in everyday life, difficulty remembering things, difficulty doing what I would say, or executive functioning tasks. If I only have one thing to focus on, it’s fine. But when I’m going through an episode like that, give me a list of groceries to get at the store and it’s going to take me twice as long to find my way around. Can I cook a dish while my kids are talking to me? That would be really difficult.
Samantha S. (Relapsed Hodgkin’s Lymphoma)

I definitely had some continuation of thought issues. I was very scattered.
Callie M. (Invasive Ductal Carcinoma, Stage 2B, Grade 2, ER+)

I already had a lot of focus issues before starting [treatment] and then I can’t focus on things.
Wade W. (Hodgkin’s Lymphoma, Stage 2A)

Mila is a cervical cancer survivor who experienced chemo brain.

“…there was a fair amount of the chemo brain aspect of things where you can’t concentrate. I couldn’t think of the words that I wanted to use and that was really, for me, very frustrating because I had always prided myself on having a large vocabulary.

I work with people and have clients and so being able to express myself the way that I wanted to was always something that I was good at. That was kind of taken away from me in that time. Very frustrating.”
Mila L. (Cervical Cancer, Squamous Cell, Stage 1B1)

Nicole B. was diagnosed with Soft Tissue Sarcoma, Stage 3 and struggled with chemo brain.

I would repeat myself or be unable to recollect things – not only short term but long term too. I remember my mom bringing up memories we had, and I just could not get there.

In the game UNO, there was a green eight that was laid down. I would see it, look at my hand, and by the time I looked back I forgot what was down. I was struggling trying to process information in front of me. It was hard to even think straight trying to get through a game.
Nicole B. (Soft Tissue Sarcoma, Stage 3, Undifferentiated Pleomorphic Sarcoma)

Once chemo was over I didn’t remember the station [HGTV] is on TV. I couldn’t read. People were dropping off books and I have to tell you that was a shock to me when I couldn’t read a book, I couldn’t focus enough.

I couldn’t watch movies. Movies required a lot of attention. I didn’t have an attention span for movies. But I could watch short shows. It was bizarre. I didn’t read magazines or books. It was these short little makeover shows. I wasn’t myself.
Barbara M. (Colon Cancer, Stage 3)

This was the worst side effect for me. I felt like I was going crazy and I felt confusion. I didn’t start seeing this until later in the treatment and it probably lasted a year or so. I didn’t have issues with school memory… I had issues with small everyday decisions. For example, I watched my one-year old during the day and some days I would go to the pantry and not be able to think of how or what to make for lunch. Something about the multitude of choices and necessity of the action would fluster me. I would call my husband crying not knowing what to do. He would talk me down and give me simple instructions that I would follow.
Melissa H. (Invasive Ductal Carcinoma, Stage 2B, Triple Negative)

I remember when I still had my day job, I was typing. Then, I just couldn’t.

It was hard. I was holding a stack of binders, then I had to walk to my desk and it just dropped because I just didn’t have the strength or my wrist was hurting.

Then you also experience what they call chemo brain where things are just a little foggy and you can’t remember. Those are things that you can’t help. It gets very frustrating.
Rach D. (Invasive Ductal Carcinoma, Stage 2, Triple Positive)

How long does chemo brain last?

For some people, chemo brain ends soon after they finish treatment. However, others may find that its effects can last for months or even years. One recent study found that 36% of breast cancer survivors reported ongoing cognitive issues six months after their treatment ended. Although it may persist after treatment, most patients will find that their chemo brain resolves within a year or so of finishing cancer treatment.

What can I do to help chemo brain?

At home

While there is no known cure for chemo brain, there are things you can do to help combat it.

Keep a pocket-sized notebook with you and write down everything. Make checklists throughout the day and check off tasks as you accomplish them, even if they’re simple things like “get the mail” or “text Mom back.”
Use technology to your advantage. If your phone has an option that allows you to keep track of where you parked your car, turn it on. Use the GPS function to set reminders that go off when you leave or enter the house.
Play brain training games on your smartphone or computer. Puzzles, crosswords, and Sudoku puzzles are also good options.
Pick up a craft, like crochet, to keep your hands and mind busy.
Take walks, stretch, or do yoga.
Some patients find that stimulant medications like Modafinil can help. Talk to your doctor if you think a medication could help your chemo brain.
Be gentle with yourself. You’re allowed to feel bad sometimes. You’re experiencing something nearly everyone around you isn’t.

I encourage trying to play games though. Do not get frustrated with yourself but try to engage your mind when you can or when you feel well enough. Try to keep yourself on your toes a little bit. We played a lot of board games and cards during treatment.
Nicole B. (Soft Tissue Sarcoma, Stage 3, Undifferentiated Pleomorphic Sarcoma)

At work

Many adult cancer patients still participate full-time in the workforce. While it can be difficult to perform at full capacity while undergoing cancer treatment, there are strategies that can help you feel a bit more control over your work day.

Apps like ToDoist, Microsoft To-do, and Google Tasks are great for keeping track of tasks on your phone or computer.
Ask coworkers to send detailed instructions for tasks and to communicate their questions and needs in writing. It is easier to remember a task sent via email or messaging than it is to remember a task told to you over the phone.
See if your company has a remote work or work-from-home policy. Many employers will understand that you may have a limited amount of energy each day, and that working from home can help you stay focused.
Request that all meetings be recorded if possible, and use a transcription app to keep a written record of what was said. Here are instructions for turning on transcription for some major video chat and meeting apps:

How can I help someone with chemo brain?

Chemo brain has only recently been seriously accepted by the medical community as a real phenomenon. Many people are uneducated about the mental effects of cancer treatment and may not understand the cognitive difficulties some cancer patients face. While it’s important to not treat your loved one like they are incapable, there are some things you can do to help while they go through this experience.

For everyone

Be patient. There are a lot of stressors that people experiencing cancer face that may affect their ability to remember things or perform tasks. Remember that they are not forgetting things or slowing down on purpose.
Don’t patronize them. A person experiencing chemo brain may be forgetful or slower to respond to you, but that doesn’t mean they don’t understand things or are incapable of making their own decisions.
Understand that it may take them a while to respond to text messages or phone calls. When you’re going through cancer, people are often flooding your phone with messages that can quickly become overwhelming. This doesn’t mean that they are trying to ignore you.

For loved ones

Help them take on a mental load. Offer to help them keep track of their appointments and medications or ask if there are tasks you can help with, like budgeting or sorting out health insurance claims.
Offer to attend doctor’s appointments or chemo sessions with them. Beyond providing emotional support, it’s important for cancer patients to have a clear-minded advocate who can speak up if something seems off.
It’s important for patients to eat well, but it can be hard to plan meals. Schedule a meal drop-off, grocery delivery, or restaurant delivery meal card. Not having to think about what you’re going to eat for dinner or worry about cooking can be a huge relief.

For coworkers

If you are their coworker, make sure your questions and instructions are clear and concise. People undergoing cancer treatment may struggle with executive function — a vague email asking them to figure out how to do something may seem like an insurmountable task to a coworker suffering from chemo brain.
Make sure all meetings are noted in an electronic calendar. Don’t ask them to remember things that aren’t explicitly written down.
Understand that they may be out of the office more than normal. Some days, even the difficulty of executing a morning routine is too much to handle. Allow them to work from home when possible.
If you are running a meeting, turn on transcription services and save a copy of the transcript in the project folder.
Ask your coworker before sharing anything about their condition with clients or other coworkers. Although you may feel that you need to explain the situation to others, some cancer patients would rather not draw attention to their diagnosis.

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