Interviewed by: Taylor Scheib Edited by: Katrina Villareal
Erica, who lost her mother to breast cancer over 20 years ago, shares her stage 0 DCIS breast cancer journey. After a decade of concerning mammograms and due to her mother’s history, she remained vigilant despite negative BRCA results. Following her biopsy diagnosis, she was overwhelmed by the treatment choices but ultimately opted for a double mastectomy to minimize recurrence risk.
Choosing to undergo a double mastectomy including nipple removal provided Erica with confidence and a cancer-free peace of mind. She subsequently underwent reconstructive surgery and as she embraced her new body, she was more excited about having no fear of recurrence.
She completed her transformation with a 3D nipple tattoo from a specialized artist, providing closure to her journey. Leading a nonprofit for kids with cancer, Erica supports other women and caregivers, emphasizing the importance of trusting oneself and the process when navigating cancer treatment decisions.
Name: Erica C.
Diagnosis:
Breast Cancer
Ductal Carcinoma In Situ (DCIS)
Staging:
0
Initial Symptom:
Indeterminate calcifications found on a routine mammogram
Treatment:
Double mastectomy
While cancer is a club you never want to join, once you’re in, there are some silver linings, like the people you meet and the life perspective that you get, and those are true gifts.
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider to make treatment decisions.
I had increasing scans over the years, but I’d never had a biopsy and that was when I thought this was going to get a little bit more serious.
Introduction
I live in Minneapolis, Minnesota. I’m a breast cancer survivor. I lead a nonprofit that helps children with cancer and their families. I’m also a cancer orphan because I lost my mother to breast cancer over 20 years ago. These multiple perspectives on cancer make me incredibly interested in other people’s journeys and sharing my journey to help other women who come after me.
Pre-diagnosis
I was diagnosed in 2018 and it came after about a solid 10 years of “scary mammograms.” Because my mother died of breast cancer, I was on high alert. I met with tons of doctors who said I have the same risk as any other human in the population. I underwent genetic testing and I wasn’t BRCA positive, but I still didn’t feel good about my health journey given my mother’s unfortunate diagnosis and death.
Over the years, I’ve had mammograms, ultrasounds, and MRIs. They would always see something a little bit scary, ask me to come back for a higher level of screening, and then say it’s fine. It built up this anxiety over the years because they started to see some abnormal things, particularly calcifications, which are potentially early signs of breast cancer.
It got to the point where I thought, When are we going to take this a little bit more seriously? I was getting routine mammograms every six months and one time, they said, “Let’s have a biopsy.” I had increasing scans over the years, but I’d never had a biopsy and that was when I thought this was going to get a little bit more serious.
While stage zero sounds great, it still requires a fair amount of intervention and a fair amount of choice.
Diagnosis
Looking back, I’m not sure if I was surprised by the diagnosis or if I felt like, “Finally.” After the biopsy, I received the diagnosis that it was DCIS, which is ductal carcinoma in situ. It’s an early-stage breast cancer. Many people can say that’s a good kind of cancer, but there’s no such thing as a good kind of cancer.
While stage zero sounds great, it still requires a fair amount of intervention and a fair amount of choice. Being presented with all those choices became the most overwhelming part because it was starting to come at me like a fire hose.
Treatment Decision Making
The choices that I had to make ranged from doing nothing to a double mastectomy and everything in between. I was given the choice of a lumpectomy to remove the part of my breast that showed early-stage breast cancer. I was also given the choice of hormone therapy. I was given a choice of radiation, even the choice of some chemotherapy. It all ranged amongst a spectrum.
My mother’s journey had been a painful one because hers also started as early-stage breast cancer. At the time, doctors said it wasn’t a big deal. As you know by the results, it became a big deal. She relapsed four times over her journey and it came back bigger, stronger, and more invasive every time.
I had all these choices of less aggressive treatment, but I wanted a double mastectomy because I didn’t want this to come back.
For me, it became this choice of how to rewrite the story. How do I advocate for myself in a way that maybe my mom didn’t? Maybe she didn’t have the right information at the time.
I felt more confident facing all these choices and because of what I’d seen with my mom, I went straight to a double mastectomy. I got a lot of eyebrows raised. I had all these choices of less aggressive treatment, but I wanted a double mastectomy because I didn’t want this to come back.
I had all the statistics and all the advice, but within about a week, I became pretty firm in my decision to choose a double mastectomy. People questioned me, but it was the best decision I ever made.
Double Mastectomy
A double mastectomy is a pretty radical choice. Once you choose a double mastectomy, they remove your breast tissue. A choice that you get to make is whether you want to also remove your nipples or if want to try to keep them through a nipple-sparing surgery.
For me, this was a fear-based choice. If I was going to do such an invasive surgery to essentially remove two near-lifetime body parts, I wasn’t going to leave anything to chance, so I chose to have my nipples removed as well.
I chose to go under the chest muscles, which is more painful but ensures the longer-term security of the implants.
Reconstructive Surgery
The other choice I had was whether or not I was going to have reconstructive surgery. I can buck the stereotype and say I don’t need breasts. I’ve already had children and was done breastfeeding. But I chose to have reconstructive surgery.
At the time, it was a very extensive surgery. It’s done in two parts, which is what I didn’t realize at first. I was in surgery for 8 to 10 hours. The first four were simply removing my breasts. I had a breast surgeon who was going to take out everything and some lymph nodes to test. Then the breast surgeon handed me off to a reconstructive plastic surgeon.
To me, plastic surgery sounded vain and unnecessary, but I had to get comfortable with having a breast plastic surgeon come in. For the next four hours, that surgeon cut into my muscles. I could have gone over my chest muscles, but I chose to go under the chest muscles, which is more painful but ensures the longer-term security of the implants.
My surgeon said, “It sounds like you’re all in and that you’re confident. This is going to be more painful, but you will have a better outcome with the implants. They’re not going to move around. They’re going to be secured into your chest. Trust me.” For somebody who I’ve just met to say, “Trust me,” is quite possibly the greatest leap of faith.
At the end of that surgery, not only did he cut underneath my chest muscles, but he essentially put two deflated balloons under my chest muscles and then sewed me up.
After that eight-hour surgery, my job was to heal and make the choice of what I wanted my breasts to look like afterward because, over time, he would fill those balloons with saline to expand my chest. If you’ve ever had dental braces, that’s the kind of soreness and pain you feel when they’re expanding your chest over time. It’s a wild ride and it was painful.
I didn’t realize how much I used my chest. When you raise your hand, that’s your chest muscle moving. I couldn’t touch my nose so when my nose itched, I had to have someone else scratch my nose for me. It was scary and painful, but I still stand by it being the best choice I ever made. I healed and have full mobility now. I can work out, do push-ups, and everything.
They look great. I can wear a bikini and you would never know.
Post-Mastectomy
Right after surgery, you start flat-chested with what looks like Frankenstein stitches. They are not pretty. What’s interesting is that every week, when I would go to the nurse or the doctor, they would say, “Oh, this is going to look amazing. I could see it.”
These sort of deflated balloons come with what seems to be a metal top that’s placed under my skin. Every week, they would put a magnet on my chest to find where that metal piece was and that’s where they would pierce my skin and inflate the balloon with saline a little bit at a time. This took about three months. It’s quite painful to stretch your skin and your muscles at the same time when this massive scar is healing.
As they’re slowly inflating these balloons with saline, I start to see what’s happening and start to see them look real. I’m still wearing loose tops and tops that zip up because I don’t have full mobility of my chest, but I was starting to feel normal again.
They were hard massaging my scars, which I couldn’t even believe. There are also certain oils you can apply. I even had a laser procedure done to reduce some of the scars. I ended up with this really beautiful chest—just without nipples.
I had to have another surgery, which was supposed to be easy but there’s no such thing as easy in this journey. They had to take out the temporary balloons and put in a permanent implant. They also did a fat graft by taking fat out of my belly and putting it around the implant so they looked natural. I walked out of the second surgery looking like someone attacked my breasts and my abs. Liposuction was so painful. I couldn’t even breathe. It’s not easy, but it was so worth it.
I wear the exact same bathing suit that I wore pre-surgery. I wear the exact same tight dresses. But here’s the kicker: I don’t have to wear a bra. My implants don’t move so I get to wear backless dresses with nothing. I get to wear fancy dresses that I wore before and not have that feeling at the end of the night when my bra is too tight and I can’t wait to take it off. They look great. I can wear a bikini and you would never know.
The biggest reason I’m so excited about this is because I have no fear. I have no fear of reoccurrence. The mental game that I had to go through to get here was hard. You heard about the physical pain. The procedures were challenging, but my mind is cancer-free and that is the most beautiful thing. I don’t worry about reocurrence. I can’t get breast cancer. I don’t have to get mammograms. I don’t worry about it and that to me is the greatest gift.
Between a lumpectomy and mastectomy, I’m confident in saying a double mastectomy.
I did get mental health therapy at the request of my breast plastic surgeon. He said, “You look great, but I’ve been around the block. I encourage you to get some therapy.” I’m a proud person and said I didn’t need it. I needed it. I absolutely needed it.
In the beginning, I had a fear of relapse. My therapist and I talked through some ways and some strategies to get around that. My body is cancer-free, my mind is cancer-free, and that is the greatest choice I made.
If I had had a lumpectomy, I’d be subject to continual mammograms and we all know that those are anxiety-inducing. I’d be subject to hormone therapy. I’d be on high watch. It would not be worth it.
A lot of people who are newly diagnosed reach out and ask what they should do between a lumpectomy and mastectomy, and I’m confident in saying a double mastectomy.
Lumpectomy vs. Mastectomy
A lumpectomy is a minimally invasive surgery where they take out the area that has the cancer and the surrounding tissue. It’s “easier,” although I’ve heard lumpectomies are still not easy.
A lumpectomy can be done outpatient, but depending on the diagnosis, there is typically some follow-up. For quite some time, you have to come in every day to have it taken care of.
With mastectomy, they remove the entire breast. Depending on whether or not that cancer has spread outside the breast, there could be chemotherapy as well.
You might need to have radiation to make sure they got everything and radiation can be painful. There’s also hormone therapy, which involves taking some drugs to make sure that some of your hormones are not feeding the cancer.
It was unclear whether or not I was going to get sensation back in my breasts and to be able to feel the pain of the needles of a tattoo was relieving.
Getting a Nipple Tattoo
I read an article about a tattoo artist who specialized in nipple tattoos. It was a beautiful article about how much compassion he had for breast cancer survivors so that’s where he dedicated his career.
I originally wasn’t going to see him because I’d have to fly across the country. It seemed to be a big hurdle and I was going to have it done at my plastic surgeon’s office where a nurse practitioner said she could do it. I kept hemming and hawing about it and I realized that I wasn’t ready for the journey to end because the last step of the entire journey was the nipple tattoo. I decided to get some mental health therapy first because I didn’t think the journey was over for me mentally.
On the day of my appointment, I canceled with the nurse practitioner. When I talked to my therapist, she said, “It sounds like this is a big thing for you. Tell me more about it.” I told her I had the dream about getting this fancy tattoo artist to do it for me. She said, “Well, then you go do that,” and so I did. It was the celebratory closure for me.
I drove up there and there was no fanfare. I was alone going to a tattoo parlor in a strip mall outside of Baltimore. I’ve never had a tattoo. I was afraid of needles and pain but here I am, about to get a tattoo, which was quite ironic.
Part of reconstructive surgery is that you lose sensation. I couldn’t feel my breasts. As I was sitting with the tattoo artist, he said, “You probably won’t feel a lot of this because you’re still in the reconstructive phase and your nerves are still healing.” Sure enough, it was painful. It was unclear whether or not I was going to get sensation back in my breasts and to be able to feel the pain of the needles of a tattoo was relieving.
The tattoo artist approached the process quite clinically. He looked at my breasts and said, “Okay, I think I’m going to do this. I think I’m going to do this.” He didn’t ask my opinion. He just asked, “You want 3D? You want it to look real?” I said, “Yes, I do,” and he went to town. Twenty minutes later, I put my shirt back on and it was over. It was truly over then.
My mission to support other women and caregivers because of the many gifts that I have been given by other cancer patients.
Life’s Mission
Cancer changed my life. I lead an organization that helps kids with cancer and their families, but that journey started when I was right out of college and didn’t have a lot of purpose. I didn’t love my first job and volunteered at a sleep-away summer camp for kids with cancer. I took a week off of work and would be the mom to these kids, whether they were seven-year-olds or teenagers. Those were some of the most life-changing experiences I have ever had.
When I was diagnosed, I realized it’s what I’m supposed to be doing. Not only is it my career now, but it is my mission to support other women and caregivers because of the many gifts that I have been given by other cancer patients.
I spent a lot of time with my mom in the hospital where I met other cancer patients. While cancer is a club you never want to join, once you’re in, there are some silver linings, like the people you meet and the life perspective that you get, and those are true gifts.
Words of Advice
Trust the process and trust yourself. No one better than yourself knows what’s right for you. While I recommend having a mastectomy or someone may have said something, ultimately, trust yourself and trust the process. That will get you through.
Discover the Latest Developments Used to Treat Advanced or Recurrent Endometrial Cancer
Edited by: Katrina Villareal
Patient advocate Tiffany Drummond and gynecological cancer expert Dr. Brian Slomovitz of the Mount Sinai Medical Center in Miami, Florida, discuss the latest treatments for endometrial cancer.
Develop a comprehensive understanding of advanced and recurrent endometrial cancer, enhancing your knowledge about the disease’s progression and challenges. Learn about the current treatment protocols and how they offer hope and recovery to patients dealing with this severe form of cancer.
Explore how immunotherapy is transforming the treatment landscape, providing new avenues for potentially more effective and personalized care. Discover cutting-edge developments in the field, including promising clinical trials that could offer new hope and treatment options for patients. Gain insight into advances in robotic surgery, including techniques using the da Vinci Surgical System, which offers precision and reduced recovery times.
Thank you to Karyopharm 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.
Stephanie Chuang: I’m the founder of The Patient Story and a cancer survivor. Mine was non-Hodgkin lymphoma. During that time, I realized how important connection was and that became the genesis of The Patient Story. This multi-channel community seeks to connect, educate, and empower patients and care partners. We do this primarily through in-depth patient story videos and educational programs with a thread of self-advocacy, asking questions, and sharing more about what you’re experiencing with your medical team, which is so important in cancers, especially like endometrial cancer where it’s critical people understand what is available to them and what to ask their doctors.
Thank you to Karyopharm for its support of our independent educational program, which helps us host more of these for free for our audience. The Patient Story retains full editorial control of all content. While we hope you walk away with more understanding, this discussion is not meant to be medical advice or a substitute for your medical care.
The discussion will be moderated by Tiffany Drummond, who has more than 15 years of experience as a clinical research professional. Tiffany lost her mother Leonora Jean Drummond to endometrial cancer in 2016 and ever since, her mission has been to promote women’s health and wellness. Tiffany works with ECANA, the Endometrial Cancer Action Network for African-Americans, which is incredible in helping to create community.
Tiffany Drummond, Patient Advocate
Tiffany Drummond: As a clinical research educator, I’ve been doing hematology-oncology research for about 20 years, and most importantly, I’m a patient advocate and daughter of someone who I lost to endometrial cancer.
Dr. Brian Slomovitz, Gynecologic Oncologist
Tiffany: Dr. Brian Slomovitz is a gynecologic oncologist at Mount Sinai Medical Center in Florida. He’s a nationally recognized expert in robotic surgery, sentinel lymph node evaluation, and immunotherapy, and has led a number of clinical trials specifically in endometrial cancer. Dr. Slomovitz, what drew you to this field?
Dr. Brian Slomovitz: When I was thinking about which specialties to go into, I enjoyed surgery. I also enjoyed the why and the how of things and what we can do for the complete care of our patients not just surgical management, medical management, or preventative management.
As a gynecologic oncologist, I focus on complete patient care, including prevention or early diagnosis, initial treatment options, cure, and survivorship. I also focus on how to manage recurrent and advanced disease, improving one’s quality of life while trying to control cancer, and ultimately leading a woman through her disease course.
For me, it’s promising and rewarding. One of the things that was introduced to me in this area is clinical research and the importance of research in offering the best care for our patients.
What is Endometrial Cancer?
Tiffany: What is endometrial cancer?
Dr. Slomovitz: In gynecologic oncology, we deal with three major types of cancer: ovarian cancer, cervical cancer, and endometrial cancer. Endometrial cancer is the most common gynecologic malignancy. It’s much more common than ovarian cancer and cervical cancer.
Historically, we didn’t think about it as much because most women with endometrial cancer do well from their disease and will die of something else. But as we focus more attention on it, we’re learning that endometrial cancer has a subgroup of patients with metastatic or recurrent disease that represents an unmet need. We need to come up with better treatment options for them and that’s what I’m focusing a lot of my time on.
In 2024, the number of deaths from endometrial cancer will outnumber the deaths from ovarian cancer, which highlights the unmet need. We need to do better. We always thought about ovarian cancer as a “killer.” The fact that there are more deaths from this disease is something that frustrates us and something that we need to do something about.
Symptoms of Endometrial Cancer
Dr. Slomovitz: Abnormal bleeding is a symptom of endometrial cancer. A lot of times, people think it’s postmenopausal bleeding, which is true if you’re in menopause and have spotting. It would be best if you had an appropriate workup with a provider who does gynecologic exams. Some people see their family practice doctor or primary care doctor, but it’s important to see a gynecologist or someone who does gynecologic exams, which would include an endometrial biopsy as well as an ultrasound.
Other symptoms include pelvic pain, pelvic pressure, and abnormal pap smears. Any symptoms that last from 10 days to two weeks or get progressively worse need to get checked. We need to encourage women to see their healthcare provider, but abnormal bleeding is the number one issue that we worry about.
Tiffany: For my mother, it was postmenopausal bleeding and I’m not sure why, but she didn’t think it was something that needed to be looked at. She thought it was normal. I say this for women in general: our GYN care is going to help us throughout our lives. It doesn’t stop when you go through menopause. Always be aware of that.
Current Treatments for Endometrial Cancer
Tiffany: What are the current standard treatments for endometrial cancer?
Dr. Slomovitz: For women who are initially diagnosed, the first step is usually surgery. After we get imaging, like a CT scan, a lot of these patients will have clinical stage 1 disease surgical resection, which is a hysterectomy. Traditionally, we did these with an up-and-down incision. Patients would be in the hospital for a long period of time. Now we’re doing most things minimally invasive.
I do mine robotically with a da Vinci robot. We’ll remove the uterus, the tubes, the ovaries, and the cervix. The advantage there is less blood loss, less pain for the patients, and a quicker recovery. It’s a little easier for the surgeon too, which I don’t mind. It’s best for our patients. They can go home the same day or the next day.
We do a sentinel lymph node biopsy using the Firefly technology. It’s like using night vision goggles to identify nodes that are most likely involved.
Tiffany: I’m so glad that these advancements exist.
Advanced & Recurrent Endometrial Cancer
Tiffany: My mother had recurrent endometrial cancer and was diagnosed at stage 3. Can you talk to us about recurrent and advanced endometrial cancer and the current options for them? When we say advanced and recurrent, what do they mean in terms of endometrial cancer?
Dr. Slomovitz: Women who are diagnosed with stage 1 endometrial cancer will make up 80 to 90% of the patient population. It’s the patients with advanced disease that we’re worried about. Similar to your mom, lymph node positivity stage 3, widely metastatic disease stage 4, and the subgroup of patients with earlier stage disease that recur represent a diagnostic or treatment challenge and an unmet need.
Traditionally, we would use chemotherapy, but as we’re learning more and more about the disease and being able to look at the molecular subclassifications of endometrial cancer, we’re learning that different types of tumors can respond differently to different types of therapies.
Immunotherapy was originally found to work extremely well in non-small cell lung cancers and melanomas. When we learned more about endometrial cancer, not only did we find that there’s activity of immunotherapy in endometrial cancer, but there are distinct subgroups within patients with recurrent or metastatic disease that respond more favorably to immunotherapy. Those are areas that we need to exploit, taking knowledge that we have, and then pushing that forward into the clinical setting.
Not all patients are the same. We need to offer more unique, personalized medicine, and to do so, we need to better understand the biology of the disease to execute a better treatment strategy.
Biomarkers in Endometrial Cancer
Tiffany: We’re hearing about biomarkers and a lot of patients are becoming more familiar because they’re being told that they either have or don’t have certain biomarkers. Can you break down the biomarkers dMMR and pMMR and why they are important in guiding treatment decisions for our patients?
Dr. Slomovitz: When cells divide, normally there are errors in the process. Cell division isn’t a perfect process. The body normally recognizes the errors and corrects them. The team of proteins that does this is called the mismatch repair (MMR) proteins. If cells are proficient in mismatch repair proteins, they’re more likely to be able to repair those cells and move forward. That’s pMMR.
The dMMR is a different subgroup deficient in mismatch repair proteins. These are the ones that the body’s unable to fix. By not having these “fixed cells” or cells that look normal, these cells look like they shouldn’t be there. They look more like non-self instead of self, so they respond better to immunotherapy.
Immunotherapy is not a poison that we give cells. Immunotherapy is sort of a stimulant of the body’s immune system to fight off something that shouldn’t be there. When we think about tumors or cells that are more responsive to immunotherapy, it’s more of the non-self cells, cells with a high mutational burden, or cells that have some different molecular characteristics. DMMR is more responsive to immunotherapy. PMMR, while they still respond to immunotherapy, they don’t respond as well. We need to treat them differently.
Tiffany: I’m assuming the typical first-line treatment approach is immunotherapy. Are there other alternatives?
Dr. Slomovitz: For the dMMR population, the best treatment option for patients with advanced or metastatic disease is chemotherapy in combination with checkpoint inhibitors. Over the last year and a half or so, we’ve had landmark trials looking at drugs including pembrolizumab, dostarlimab, atezolizumab, and durvalumab, which are all checkpoint inhibitors. Given in combination with chemotherapy, they have shown unprecedented improvements in overall survival and progression-free survival in patients with dMMR tumors. There was a 70% reduction, which is remarkable.
Tiffany: What is a checkpoint inhibitor?
Dr. Slomovitz: A checkpoint inhibitor is a medication given to a patient that helps to stimulate the immune system to better fight off things that shouldn’t be there. When we give it to a patient to attack a tumor, the dMMR tumors are recognized by the body as something that shouldn’t be there more than the pMMR tumor, so that’s why checkpoint inhibitors work better in that setting.
Highlighting Endometrial Cancer Clinical Trials
Tiffany: Let’s talk about the changing treatment landscape. Immunotherapy is likely to become a more common treatment for women with advanced endometrial cancer. Following the results of these clinical trials that you were talking about, can you talk more about this and what these breakthroughs were with these results?
Dr. Slomovitz: The initial results showed that giving immunotherapy with chemotherapy works better. As we move forward, what we’re focusing on is to see if we can give combinations or single agents in the first-line setting before chemotherapy to eliminate the use of chemotherapy but to get the same effectiveness.
Recently reported was one trial looking at a combination of pembrolizumab and lenvatinib in the first-line setting. That didn’t meet its statistical endpoint, but that looked at all comers, pMMR and dMMR.
There are two ongoing trials now: one’s completed accrual but hasn’t read out and one’s still accruing, looking specifically at the dMMR population to see if a checkpoint inhibitor alone can work in those patients. I’m the global lead on one of those. We’re looking at pembrolizumab in patients with dMMR tumors and comparing it to chemotherapy to see if we can get rid of chemotherapy for that population. Now if we can, it’ll be amazing.
Tiffany: Very promising. This is why I’m such a proponent of clinical research and increasing diversity and participation, so we can get good data.
Tiffany: Let’s talk about adding immune checkpoint inhibitors, like pembrolizumab and dostarlimab. What is the conversation about this becoming the new standard first-line treatment for advanced or recurrent endometrial cancer patients with dMMR tumors? Is this something that needs more research or more data to fully understand the scope?
Dr. Slomovitz: I would say with certainty that for the dMMR population, unless there’s a contraindication to immunotherapy checkpoint inhibitors, those patients deserve or should get checkpoint inhibition as the standard of care based on the promising results. It’s not as much of a slam dunk for pMMR, but for the dMMR population, treatments should include a checkpoint inhibitor, without a doubt.
Maintenance Therapy Options in Endometrial Cancer
Tiffany: Let’s talk about some clinical trials that are actively enrolling in the advanced and recurrent setting, with late-stage endometrial cancer, such as selinexor as a first-line maintenance therapy. What trials are ongoing that people can learn about and be eligible for?
Dr. Slomovitz: In addition to leading the division of gynecologic oncology at Mount Sinai Medical Center in Miami Beach, I also serve in the GOG Foundation and lead the uterine cancer clinical trial portfolio. In that capacity, we have a lot going on in uterine cancer, which is exciting. Wearing my Mount Sinai hat, we’re excited that most of those trials are opened up at Mount Sinai.
Selinexor is a nuclear transport inhibitor. This is for pMMR, most likely p53 wild-type, which is a biomarker in the cell. The trial doesn’t require pMMR but knowing that they get checkpoints, it’ll probably all end up being the pMMR population. Chemotherapy versus chemotherapy and maintenance selinexor.
Now we did the preliminary trial, called the SIENDO trial, where we looked at all comers, whether they’re p53 wild-type or mutated, and found that the primary outcome didn’t benefit the selinexor group. But if we did a subgroup analysis, if we looked at patients with p53 wild-type tumors, there was a big difference in outcomes. Outcomes improved in patients treated with selinexor.
We then went to the FDA and said, “Wow, look at this outcome. This will be better for our patients.” The FDA agreed, but appropriately, they said we needed to do a separate study looking at that to see if it works and that’s one of the trials that we have open accruing globally. It’s called the XPORT-EC-042 trial. We’re looking to see specifically in chemo-naive, p53 wild-type patients if adding selinexor can help improve outcomes.
Other areas are taking off in endometrial cancer. There’s a class of drugs called antibody-drug conjugates (ADCs), which is a novel class of drugs. They have three components. They have an antibody that’s attracted to a protein on the tumor cells. Then there’s a chemotherapy kill, the part that helps kill the cell. The third and most important part is the linker.
When the drug is given, it travels throughout the body and only goes to the cancer cells because of the antibody-protein interaction. Once it gets there, the linker lets go of the chemotherapy, which then goes in and kills the cells.
In endometrial cancer, we recently got FDA approval in all comers for trastuzumab deruxtecan (T-DXd) based on the DESTINY-PanTumor02 data, which is an ADC that’s attracted to the HER2 protein on tumor cells. That had unprecedented response rates in the recurrent setting.
Tiffany: We have a lot going on in the clinical research world with endometrial cancer. I’m so excited because it wasn’t always as robust, so I’m glad to see researchers taking steps to improve that.
Endometrial Cancer Treatment Side Effects
Tiffany: Let’s talk about clinical trials in terms of side effects. We know that a lot of these drugs are toxic and have a lot of side effects.
Dr. Slomovitz: Clinical trials allow patients to get a drug that they normally wouldn’t be able to get, which hopefully, improves outcomes. New drugs can have new side effects that we need to be aware of. One of the things that I talk to my patients about when they go on a clinical trial is they get two teams of healthcare providers following them. It’s not only me and my team with our nurse practitioners and nurses, but the whole clinical research team.
Clinical research is like following a cookbook. To get FDA approval, we try to make treatment as homogeneous as possible without a lot of differences. We follow the cookbook to say dosing, when should things start, when to hold the dose, when to reduce the dose, how are the side effects being managed, and all those things. Between the research team and the clinical team, we communicate closely with our patients. We follow the side effect profile. We look for new signals.
Tiffany: That’s an excellent point you made. When I listen to the experiences of people in clinical trials, they tend to have the sentiment that they get more comprehensive care because they have this whole team of people including other providers outside of their GYN oncology. One of the benefits of clinical research that I think a lot of people don’t know because they’re afraid to jump into the unknown is that you’re getting looked at a lot more than you probably would.
Dr. Slomovitz: It’s important to highlight one of the fears patients have in going on clinical trials is not the side effects they’re going to get; it’s getting a placebo. Whenever patients are on a clinical trial, they’re at least getting the standard of care.
We do not experiment on patients. We do clinical research and study if the new treatment options do better, the same, or worse than the standard of care. Unless the standard of care is observation, we don’t give a placebo. I have to highlight this in every single talk I give.
I don’t want patients to think that if they’re going on a clinical trial, they’re actually getting worse care or they’re being studied incorrectly in a way we did historically. Over the last 20 years, the way we do research in the country has been completely revamped to be ethical, sound, and looking out for the best of our patients. There’s an understanding that we need to do better and make sure we give patients at least the standard of care. We need people to acknowledge that in the research community, we’ve changed. At worst, they’re getting standard of care, but even with the standard of care, they’re getting two teams watching.
Tiffany: I’m so glad that you brought that up. I drive that point home every time I’m talking as well because a lot of patients, specifically on cancer trials, do think that they don’t want to be experimented on. At the minimum, you’re going to get whatever the standard is. Thank you for driving that point home.
Diversity, Equity & inclusion (DEI) in Cancer Trials
Dr. Slomovitz: There’s something that we often mention in the last five minutes of these interviews that needs to be mentioned in the first five minutes. Diversity.
Once you talked about a patient signing on and not getting a placebo, patients need to know that they’re being represented on these trials and that they’re not the only person from their community from coming in on the trial. They’re equally represented. It’s crucial. We need to make sure that the results of the trial translate across different populations.
I’m going to throw the numbers out there, which are disturbing to hear but are facts. Black women are nearly twice as likely to die from endometrial cancer than white women. There’s no other way to say it. We need to do better.
In these research trials, we need to make sure that there’s an appropriate representation of all different diversities for the results to translate to those groups. If we have a clinical trial with 100% white women and it works, that doesn’t mean it’s going to work in Black patients, Hispanic patients, or Asian patients.
We must have this conversation at the beginning of the interview because we have to focus on it. We need to increase the diversity in our clinical trials and then we could ensure not only to get better outcomes but better outcomes across different populations.
Tiffany: A man after my own heart. This is something that I have a personal and professional passion for, increasing diversity in clinical trials and how important it is that when we look at these approvals, it’s representative across populations. The FDA came out with guidance that when you’re submitting investigational new drug applications, you need to have a diversity plan. I hope that researchers and investigators measure their success with that and not simply saying they tried but didn’t make it. Thank you for being a proponent of that.
Dr. Slomovitz: Patients need to reach out to their providers to talk about the option of clinical trials. As physicians, we want what’s best for our patients, even if it means taking care of a patient with the best standard of care at the hospital down the street if there’s a clinical trial available. We’re working towards having a community to be able to offer patients clinical trials. Fortunately, we have a lot going on at Mount Sinai Medical Center, which I’m able to offer to our patients.
Making patients aware of clinical trials is important. How do we do that? We have to go into different settings and different areas where we’re not used to. We used to put up a flyer on the wall that said, “Come to the hospital to learn about clinical trials.” We have to understand that certain populations either can’t get to the hospital, don’t want to go to the hospital, or don’t know what’s going on in the hospital. Going out to community centers, advocacy groups, churches, and places like that is extremely important to help overcome those barriers and biases against clinical research.
We don’t realize there’s not only the fear of research but there’s also the practicality of research. For example, sometimes we send our patients a questionnaire to fill out before an online visit. A lot of patients still don’t have access to Wi-Fi, so what do we do about that? Or we ask them to come to the hospital for a three-hour appointment. Who will take care of that person’s children or sometimes their grandchildren when they’re the primary caregiver? What if that person works and if they don’t, they can’t afford dinner? Those are things we need to do better at.
We’re working closely with sponsors to help overcome some of the things that we can overcome. We can’t do everything, but if it means having a sponsor pay for four hours of child care to get a patient on the research, it’s important to do that. The DEI plans that you mentioned include some of these ways to overcome the barriers associated with research to increase diversity, which will make the outcomes of trials better.
Setting Expectations for a Patient’s Clinical Trial Experience
Tiffany: Hearing the word “research” can be scary, but what can someone who has endometrial cancer expect when they go on a clinical trial?
Dr. Slomovitz: There needs to be an understanding that they’re going to get at least the best care if not better care than they would get off a clinical trial. They need to be comfortable in the environment.
Here in Miami, much of the population doesn’t speak English, so we need to educate patients about clinical trials in their language as best as we can. The cold comfort is the fear of the word research and fear of not being able to understand the information, so all of our consent forms and patient information are offered in multiple languages.
They need to understand that they’re watched closely. They may have some side effects that we’re not expecting, but just the same, they may have some outcomes that we’re not expecting either.
They need to know that it’s not a lifelong sentence. Part of the consenting process is if they decide to back out, they could back out. We’re not here to force people to do anything. We’re here to recommend. We’re not here to be paternalistic. Patients sometimes ask, “What would you do if it’s your family?” We’re honest with them about that, but we need to make it an experience that patients appreciate.
There are better rewards than a patient not responding to a trial, but a patient who’s not responding to a trial who says, “Doc, what’s next? What’s the next clinical trial for?” That means we’re doing a good job in offering that patient a trial. We knocked down barriers and that’s a patient who wants to do the best for herself.
Tiffany: I do tell people who are thinking about participating in a trial as well that they’re not only doing it for themselves, they’re doing it for future patients. If we’re altruistic, then participating in clinical trials is one thing that we can do to help others.
Requirements and Responsibilities of a Clinical Trial
Tiffany: Let’s talk about the actual procedures and tests that are done. People might be surprised that they already get these done anyway. What can someone expect?
Dr. Slomovitz: There are some similarities and some differences. Similarities include blood tests, appointments with doctors, signing consent forms, and answering questionnaires. These things take a bit longer, but they’re part of the process that we need to go through to get them on a trial. Those are things that we normally do but they’re a little bit more intense in a trial. It’s part of the standard of medical care not only of research care.
In addition, there are tests that we need to do that are outside the standard of care but important for a particular trial. For example, we don’t normally have to do a heart scan and an echo, but for a certain drug, we might have to do them.
The most annoying thing patients may need to do will be an extra biopsy. A lot of our trials now are biomarker-directed and some of these biomarkers are novel, so we don’t have that information unless we do a new biopsy. Any procedure you do has its risks and benefits. Fortunately, a lot of times, biopsies are relatively straightforward.
Improving Diversity in Clinical Trials
Tiffany: How can we improve clinical trial awareness and education in underserved communities?
Dr. Slomovitz: When we talk about a cancer that’s deadly and may end their life prematurely, it’s important to know all the options from the beginning, even if they’re not coming to the office from day one and thinking about or eligible for a clinical trial. Maybe not now but in the future. It’s the education process that says we have things on the standard of care and off the standard of care. It’s important to share the results with our patients so they see that we’re moving forward, knocking down some of the biases.
We talked about things like financial toxicity, time toxicity, and effort toxicity, and helping to overcome those barriers. There are resources out there. Sometimes patients can’t drive. Some of the car companies have different deals. The American Cancer Society supports that and things like that.
It’s a process. We’re getting better, but we still need to do better. I’m not going to be happy until we have a clinical trial option available for all of our patients with advanced recurrent disease to allow them to get the best standard of care before they are defeated by cancer.
Tiffany: The average life cycle of a clinical trial, from the time it starts to the time it gets market approval, could be anywhere between five-plus years. But if you are participating in that clinical trial, you get first-hand results on what’s going on in your care and that data is going to be used to push those approvals.
June is Uterine Cancer Awareness Month
Tiffany: You and I are very passionate not only about diversity in clinical trials but also about education and promoting clinical research. June is Uterine Cancer Awareness Month. Can you talk about that and why that’s important? What are you and Mount Sinai Medical Center doing to promote Uterine Cancer Awareness Month in June?
Dr. Slomovitz: We saw an unmet need. There’s Cervical Cancer Awareness Month in January, Ovarian Cancer Awareness Month in September, and Breast Cancer Awareness Month in October. We needed to make Uterine Cancer Awareness Month, so we started that in 2023.
Mount Sinai is making a big effort here and leading it in South Florida. They also have been supportive of my work with the International Gynecologic Cancer Society, the global leader in gynecologic cancers.
Final Takeaway
Tiffany: What is your takeaway for patients who are newly diagnosed and starting this journey?
Dr. Slomovitz: It’s important to describe why they got it or if we can know why. Sometimes these are obesity-related, hereditary, or caused by other factors. What can they do to get the best treatment options?
Make sure you’re comfortable with your care. Many patients can get a second opinion to make sure that they’re getting the best care. If they’re uncomfortable with the first opinion, seek out a second opinion because this is an important decision. It’s not only the surgery but the follow-ups. Not to say that the first doctor may have done something right or wrong, but when there are different options that patients weren’t made aware of from the beginning, it’s extremely frustrating.
Make sure that clinical trials are an option. If your doctor doesn’t do clinical trials, make sure that he or she is willing to send you to a center that has some of those clinical trials.
Create your medical team. That includes the patient, the patient’s family, friends, doctors, nurses, and navigators. It takes a team to defeat cancer.
Tiffany: Share this discussion with your family, friends, and loved ones. As Dr. Slomovitz said, don’t be afraid to have these discussions, especially when it comes to GYN care and health. A lot of times, we don’t want to talk about that as women and that’s something that we need to get around as well.
If you have a symptom that you know is not normal for you, speak up. Go to your provider and get the care that you need.
Dr. Slomovitz, thank you for the work that you do at Mount Sinai Medical Center in Florida and around the globe. Keep pushing the needle forward. I’m very hopeful that five years from now, we’re going to be in a whole different space with endometrial cancer, so I can only imagine where we’ll be 20 years from now.
Dr. Slomovitz: Tiffany, thank you so much. The future is bright and I’m excited about what it brings. I look forward to talking with you in the future when we talk about our victories too.
Stephanie: Thank you so much, Dr. Slomovitz. I couldn’t agree with Tiffany more. Thank you for being a global leader in this space. The rapid pace and shifting of the landscape of treatment options and all the research that’s happening is incredible. Please continue to do the great work that you do.
Thank you also, Tiffany, for leading this conversation to infuse that patient-care partner voice, which is so important for us here at The Patient Story and our community.
Check out ECANA: Endometrial Cancer Action Network for African-Americans and the work that they do. They create a community for African-Americans who have endometrial cancer or have been impacted by an endometrial cancer diagnosis.
Thank you so much for joining us. We hope to see you at another program.
Special thanks again to Karyopharm for its support of our independent patient education content. The Patient Story retains full editorial control.
Michael recounts his journey with diffuse large B-cell lymphoma (DLBCL) alongside his wife and care partner, Kimberly. He was initially diagnosed in 2016 but after experiencing pain in his lower back and leg coupled with severe itching, it led to a diagnosis of a relapse.
After undergoing chemotherapy, he faced severe side effects including weight loss, itching, and pneumonia. He then underwent CAR T-cell therapy, experiencing a brief remission. Michael tried a drug through a clinical trial but saw limited success. Eventually, he turned to epcoritamab (EPKINLY), which has brought about significant improvement without notable side effects and improved his quality of life.
Michael emphasizes the importance of advocacy, seeking multiple opinions, and maintaining hope throughout the challenging journey. His wife Kimberly stresses the crucial role of care partners in managing and supporting treatment and well-being. She emphasizes the significance of self-care for caregivers and persistence in seeking answers and treatment options.
Thank you to Genmab 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 was having lower back pain and an incredible amount of pain down the front of my right leg.
Michael
We knew two issues were going on, but we had no idea that they were pointing to the same thing.
Kimberly
Introduction
Michael: I was born and raised in Ravenna, Ohio. My wife Kimberly and I have six daughters and 10 grandchildren.
Kimberly: I didn’t know I would be a care partner when we got married, but it was a role I took on. I did it willingly, but it was a rough road.
Pre-diagnosis
Initial Symptoms
Michael: I was having lower back pain and an incredible amount of pain down the front of my right leg. I thought it was a pinched nerve or I’d done something wrong while working out.
Kimberly: We thought it was back trouble. That was coupled with severe rashes and itching. At that time, the two didn’t seem related. We knew two issues were going on, but we had no idea that they were pointing to the same thing.
Testing
Kimberly: The back and leg pain started around Labor Day and the rash started in October. By November, we noticed weight loss.
The Friday after Thanksgiving, he consulted with an orthopedic surgeon since we presumed it was back trouble and the surgeon ordered an MRI.
Michael: My wife pushed, so we got in sooner than scheduled.
They began treatment with the inclination that it probably was going to be diffuse large B-cell lymphoma.
Kimberly
Diagnosis
Kimberly: Based on Michael’s previous history, the doctor said, “We’re seeing enlarged lymph nodes. You have a lot of tumors pressing on your spine and that’s why you have this pain. We’re pretty sure your cancer is back.”
After the MRI, we saw the oncologist he had previously worked with.
Michael: I was diagnosed with DLBCL in 2016.
Kimberly: They ordered a biopsy, but because it was so severe, they began treatment with the inclination that it probably was going to be diffuse large B-cell lymphoma. They didn’t want to hold off on treatment. He had two rounds of chemo when the results of the biopsy came back and confirmed that it was DLBCL.
Michael: We didn’t find out what was going on until we went to Columbus. I will always be grateful to the oncologist in Akron because he had the wherewithal to say, “This is beyond me and I don’t know what to do with this.” He put us in contact with the hospital in Columbus and we met Dr. Voorhees, who took the ball and started running with it.
Kimberly: He was malnourished and dehydrated because of severe weight loss. The majority of the weight loss happened within three weeks.
Reaction to the Diagnosis
Michael: We were not expecting to hear that. When you hear something like that, it sets you back on your heels.
It’s scary because you don’t know what’s going on. Most people who get a cancer diagnosis start by looking for answers and don’t expect it to be serious. Most people think, I’ll get this taken care of and then we’ll move on the next day. Our next day turned into a 2 ½-year journey.
Kimberly: In the beginning, you don’t process because you’re on autopilot and doing everything you can for your loved one, like getting them to treatments and making sure they’re comfortable. Oftentimes, the reality of what’s happening doesn’t sink in.
An example is when we spent Christmas Day in the hospital. That was his initial stay from being dehydrated and malnourished and when he received his first round of chemo. I cooked him a quasi-Christmas dinner in the visitors’ lounge of the hospital.
Looking back at pictures of him, he was on the edge, but because I was so in the moment and going through everything a day at a time, I didn’t realize it then. A lot of the processing didn’t happen until later on.
One of the side effects I had was some of the worst itching of my life.
Michael
Treatment
Chemotherapy
Michael: We started with chemotherapy. I received a high amount of chemotherapy and I about died twice from it. Looking back, it was necessary to save my life.
I wasn’t in very good shape at all. I started at around 240 lbs. By the time we got to Columbus, I was down to 150 lbs. Being in that state physically is not a good place to start.
Side Effects of Chemotherapy
Michael: One of the side effects I had was some of the worst itching of my life to the point where it was causing me to have a different outlook on things. It was horrible. I’ve never experienced anything like that in my life.
Kimberly: When they started a second round, the reactions got worse. That’s when his skin started to blister and he was treated as a burn patient.
At that point, his doctor said, “This is way more than I can handle. I want you to go to the James Cancer Center.”
Michael: They had to come up with other treatment options. Thankfully, they got us through. It was like going through stages. Everything we went through got us to the next step. Then from there, we’d go to the next step. It went on down the line like that for a while. They kept me alive and kept me moving.
CAR T-cell Therapy
Michael: Our main goal was to get to CAR T-cell therapy, but we had to choose interim treatments in order to keep the cancer at bay long enough.
I asked Dr. Voorhees, “What do I have to do to be eligible for CAR T-cell therapy?” He said, “You have to be able to walk into my office.” Ten days later, by the grace of God, I was able to walk into his office. I went from being flat on my back to walking into his office.
I didn’t know anything about CAR T-cell therapy. We learned quickly, especially my wife. She’s a detail-oriented person and because of who she is, we learned quite a bit about how CAR T-cell therapy works. She has a curious mind and doesn’t accept not knowing things whereas I’m more of a big-picture guy. Tell me where we’re going and I’ll be there to do my part.
At the 100-day mark, I had a PET scan and they told us that my cancer had returned.
Michael
Post-CAR T-cell Therapy Monitoring
Michael: At that time, we thought CAR T-cell therapy was our cure-all. We believed that. But it turned out to be another step to get us to where we needed to be.
Relapse
Michael: At the 100-day mark, I had a PET scan and they told us that my cancer had returned. I didn’t feel any symptoms. My energy level was starting to increase. My weight was starting to come back. I was feeling good.
Reaction to the Relapse
Michael: When I receive information like that, I go quiet. I’m an internal processor and I think things through before I comment. I felt angry and frustrated. That was a bad day.
We believed that CAR T-cell therapy was a cure-all. We didn’t know that it only had a 47% success rate. Nobody told us. I don’t know if it was an oversight or nobody thought about it, but to be honest, there was some bitterness on my part because no one told us. But there comes a point where you have to accept things, move forward, and start looking at other options.
The next time we met with Dr. Voorhees, the first thing I asked him was, “Why didn’t somebody tell us that the success rate was less than 50%?” He said, “I don’t know why that didn’t happen.” He didn’t dodge the question. He was very honest with us about it. You don’t want to hear bad news, but you need to hear everything so that you can make good decisions.
I never allowed myself to think that there would be anything negative coming from that. We did everything that’s been asked of us. We trusted it and believed it would work. For 100 days, it was great.
Joining a Clinical Trial
Immunotherapy
Kimberly: We’re thankful that in today’s world, multiple options are available. His oncologist, who we started working with prior to and after CAR T-cell therapy, is always great at providing options. He felt that our best chance for controlling the lymphoma and giving Michael a quality of life would be to go on a trial.
There was a trial that he was aware of, which had some results, and he thought that would be best. We’re very adventurous and very aggressive, so we said, “All right, let’s do the trial.”
He was trying to keep my cancer under control until we could get to the point where we could find something that would work well.
Michael
Michael: I took eight pills a day and had to be monitored. Thankfully, I didn’t have any side effects.
Kimberly: Every day, I’d say, “Oh, you look a little better,” or, “Oh, you gained a little weight.” After several months, it was obvious that it wasn’t having an effect.
Michael: A PET scan showed that the disease progression slowed down but not to the degree that they had hoped. He was trying to keep my cancer under control until we could get to the point where we could find something that would work well. He said, “We’re going to try to move on to some other things because that wasn’t working.”
Kimberly: The good news is that it wasn’t necessarily worse, but there was no change, and there definitely still was active disease so we had to do something else.
Bispecific Antibody
Kimberly: Dr. Voorhees presented us with three options, but he felt that two of them were not viable.
His number one option—and the one I wanted Michael to pick—was another round of chemo because that’s a sure thing. We knew that it would control the lymphoma but not sure how it would play out.
A second option was to have a round of immunotherapy, which he responded to before but wasn’t a sure thing. Michael chose immunotherapy because he said, “Why would I want to be alive if I can’t have a quality of life and actually live?”
That was hard for me as a care partner because I wanted the sure thing. We knew that chemotherapy would knock out the lymphoma and keep it under control, but as a care partner, I also had to respect his wishes.
Michael: I love Dr. Voorhees dearly. He’s a good man. He makes you part of the process. If you start getting off the path a little bit, he’ll gently steer you back on, which I’ve always been grateful for and appreciated.
Kimberly: Based on Michael’s previous response to CAR T-cell therapy and the information from ongoing trials, epcoritamab seemed like it would be our best hope. Dr. Voorhees was confident that we would see at least some response.
Michael: He laid out the options. It was my choice. The choice I made was something that I thought would work best for me because of how my body handled CAR T-cell therapy. Bispecific antibodies were very similar so we went in that direction.
Kimberly: I read about the trial on epcoritamab and I felt that everyone who participated was identical to Michael. They had been through very similar things and that was very encouraging at that point.
We had to apply for compassionate use from the FDA because it was still waiting for approval. Michael had to have some additional treatment.
I thank God every day for the people who came up with the medication that saved my life.
Michael
Michael: I’m on epcoritamab (EPKINLY). One of my greatest hopes and prayers is that people have the opportunity to continue on to tomorrow, to enjoy life, and to enjoy their families.
Right now, I take epcoritamab once a month. I started with one a week and that went on for a while, then it went down to one every two weeks, and then we got to the point where I’m at now. The process takes 30 minutes. I used to take a couple of pills before I received the injection, but I don’t have to do that anymore. I go there, they give me my injection, then I go home.
From where we live, it takes between 2 ¼ to 2 ½ hours each way to drive to Columbus for a five-minute injection. It’s a very small price to pay for the results that we’re getting. Compared to everything else that we’ve been through, that is a very easy solution.
I thank God every day for the people who came up with the medication that saved my life. It was a very long ordeal for us and, thankfully, because of a lot of very intelligent people, epcoritamab was developed, is working for us, and makes a big difference.
Response to Epcoritamab
Michael: Within a month of receiving epcoritamab, my weight started coming back. My strength returned and I was able to do things that I hadn’t been able to do in quite a while. I’m back to 238 lbs and getting to do things that I never used to do.
I’m back to working out a lot, which I enjoy. My wife and I ride bikes, kayak, and play with the grandkids. We love to ride roller coasters and we like to travel. We live life and that’s something that was taken from us.
A lot of things were stripped from me when we went through cancer. I like to have the right to make my own choices and that was very hard for me to accept. To this day, when I think back on what happened, it doesn’t sit well with me. You have to learn to deal with it and get to the point where you find the goodness in things.
Kimberly: The immunotherapy did its job. It was almost as if I could see him transforming weekly. His energy level was up. He was able to resume his activities.
The day that I knew that we had hit a turning point was when he worked for about 10 hours in our yard. He loves landscaping. He’s an arborist by trade. He came inside and said, “I’m exhausted.” The red flags went up and I said, “Oh, no, here we go.” And he said, “No, I’m not cancer fatigued. I’m exhausted from working hard in our yard.” That was the moment I knew that we had turned a corner.
Side Effects of Epcoritamab
Michael: There were supposed to be some side effects, but I didn’t have any. It operates in a similar way as some of the medications that worked well for me, so I thought, If that worked really well, we’ll go ahead and have a go at this. It was a medication that my body accepted and that worked well. I have been at full tilt ever since. It’s a true blessing for us.
Don’t be afraid to ask all the questions that you want to ask. Make sure that you’re getting the information that you need.
Michael
Words of Advice
Michael: Part of the reason why my wife and I are doing what we’re doing is to help. We don’t want anybody to go through what we did. If there’s anything that we can do to help somebody look in another direction, hang on one more day, or give them a little hope that there is a better tomorrow out there, then that’s what we’re doing. We want to help and this is one of the ways that we’re doing it.
Don’t wait. Go see a doctor. If the physician that you are seeing now is not the right one for you, don’t be afraid to switch. At the end of the day, it wasn’t just about me. It was about my family and continuing on to be with them.
When you get to a hurdle that you need to cross, be your own advocate. Be involved in your own care. Find a doctor who will talk to you, not at you. Find a physician who will work with you.
The oncologist that we were seeing in Akron said that this was beyond him and what he was accustomed to dealing with. Once he got the PET scans, the test results, and the first attempt at chemotherapy, he said this was beyond him. I admire him for that because he could have said, “We can try this, this, or this,” but he cared enough about us to say, “This is beyond me.” I have always appreciated that about him.
I’ve always been grateful that he had the courage to say that he wasn’t the person who could do this for me. He could have been prideful and said, “I can handle this,” but he didn’t. He had my best interest at heart. We got pointed in the direction we needed to go, so I’ll always be grateful to him.
Before going to the James in Columbus, we did some research and, for us, it’s one of the premier centers in the United States for cancer treatment so we were very comfortable with that decision.
Everybody we met at the James was wonderful—the doctors, the nurses, the people who make the food, the people who clean the rooms. They were all wonderful people, very kind, very loving, very patient, and not afraid to answer questions. I can’t tell you what a really good organization they have down there so I have no regrets going there. Because they took care of me, I’m here today and I get to enjoy my wife, my family, and my friends. I get to enjoy life. Two years ago, that was not the case.
Don’t be afraid to ask all the questions that you want to ask. Make sure that you’re getting the information that you need. You owe yourself that much.
Don’t be afraid to change. Don’t be afraid to try things. Rely on your family and friends because they want to help. They may not always know how, but they want to help. Allow them to be part of the healing process. It makes a big difference.
There has been some goodness that came out of all this and we’re trying to focus on that now. I’ve tried to forget some of the things that happened because they were so bad. I’m trying to look toward the future and enjoy life the best way I know how.
Have things to hold on to, whatever it takes for you to hang on for one more day. For me, it was religion. If you’re a religious person, God is your rock. We’re a religious family and that was something that helped us get to the next day.
Have hope. I know that’s going to be hard at times, especially if you’re getting bad news after bad news after bad news. Sometimes that happens. Don’t give up. Everything that we did that didn’t work was a stepping point for us to get to the next step, to the next day, and to where we are today. Do everything in your power to not give up.
You and the people around you are a lot stronger than you realize.
Michael
There’s nothing to be ashamed of when it comes to talking to a mental health professional. They can help make a big difference. Sometimes you need to talk things out. You and your family are under a lot of pressure and stress.You have a lot of questions and maybe wondering if you’re going to have tomorrow. That is another avenue that you can take to help you clarify and focus on what you have to do to get to the next day. Being prideful that you don’t show your emotions is not a good thing. No one can do that. Sometimes things come out and that’s okay.
Value your family, the day that you have, and the life that God has given you. Be glad to get up in the morning and see the sun come up. Be happy with small things.
You and the people around you are a lot stronger than you realize. I learned that about my children. You try to protect your children by keeping things from them because you don’t want them to feel pain, but I learned that you don’t have to keep things from them to protect them. They’re there to help you and they will help you in ways that you never thought would happen.
My grandkids would always write me little notes and tell me, “You can do this!” They were right. Family is everything and everything like that matters. The things that used to matter to me are not very important anymore. It helps you focus on what matters.
It has been an experience, but at the end of the day, it’s been a good one. I’m grateful for everything that everybody has done for us and for where we are in life right now. It’s good to be alive, so I’ll do the best I can to enjoy life every day and be happy.
We want to help and that’s why we do what we’re doing. If this makes one person’s day a little better, then we’ve accomplished our goal.
Figure out a way to take care of yourself. It may look different to you than it does for other people, but it’s important and it’s okay to think of yourself.
Kimberly
Kimberly: Advocate for yourself and for the person who you’re going through this with. We all assume that medical providers know everything. They know a lot and we’re thankful for them. However, they’re not with our loved ones day in and day out. They don’t see the subtle changes that happen day in and day out. There are things that you can bring to their attention that they may not catch. It’s not that they don’t know their job. It’s not that they don’t care or that they’re in a hurry. They’re just not with them.
Ask questions. If something doesn’t seem right, ask. The worst thing that’s going to happen is the doctor is going to say, “No, this is correct,” or, “I’ve already taken that into consideration.” The best thing that’s going to happen is you’re going to bring up something that they were unaware of and that could make a difference in care.
I encourage care partners, whether you’re a spouse, a family member, or a friend, to figure out a way to take care of themselves. They say to get rest and ask for help because you can’t give if your tank is empty. All of those things are true, but no one tells you how to go about that.
It’s different for each person. Oftentimes, it’s difficult to think of yourself because you’re healthy and not the one going through treatment or constantly wondering what’s going to happen tomorrow. It’s important that you figure out a way to take care of yourself. It may look different to you than it does for other people, but it’s important and it’s okay to think of yourself.
We were dealing with a recurrence so there were things that we needed to be aware of that someone who is getting a first diagnosis may not.
All the little things matter. If something is persistent, you might think it will go away and it might, but it’s better to find out. If something is persistent and you can’t get any answers, keep asking and keep looking. Don’t defer to, “This is the best we can do,” “We’re not sure,” or, “Try this.” Keep asking.
On this side, it’s easy to say, “You have to have hope. Hope is what got us through.” It’s true. Having hope keeps you going. However, when your husband’s glucose levels are so low that he shouldn’t be able to open his eyes or breathe and you’re not sure how many more breaths he has, hope is hard, but you have to find something to hold on to.
With a terminal diagnosis, that hope may be that you get to spend five more minutes with that person. It might be that you get to spend one more day with that person. Our mantra through the whole thing is that life is good as long as we’re breathing the same air. It didn’t matter if it was hospital air, Hawaii air, bedridden air in our home, but as long as we were breathing the same air, there was hope and that’s what got us through. Find whatever hope is for you.
Special thanks again to Genmab for its support of our independent patient education content. The Patient Story retains full editorial control.
Kirsty’s Stage 4 Squamous Cell Kidney Cancer Story
Interviewed by: Taylor Scheib Edited by: Katrina Villareal
Kirsty, a single mother of two from East Yorkshire, England, was diagnosed with a rare and aggressive form of kidney cancer. Reflecting on her journey, she realized that she had been experiencing symptoms for years. During a 2021 check-up for endometriosis, fluid was discovered in her left kidney, but no further investigation was done. For two years, traces of blood in her urine were dismissed as part of her endometriosis.
In May 2023, Kirsty experienced constant flank pain on her left side after a bicycle fall. She also suffered from backache, fatigue, and significant weight loss. Persistent pain led to repeated visits to her general practitioner. In October, an ultrasound showed significantly more fluid in her kidney and a CT scan with contrast revealed the spread of cancer.
On December 1, 2023, Kirsty was diagnosed with stage 4 squamous cell kidney cancer that had spread to some lymph nodes. Though surgery was not a possibility, she began chemotherapy, which significantly reduced the tumor but came with severe side effects such as fatigue, nausea, and nerve pain. Despite the initial plan to do six cycles, she stopped after five due to the intensity of the treatment.
Kirsty was open with her children about her diagnosis, providing emotional support and encouraging them to express their feelings. Inspired by her mother’s battle with cancer, she focused on creating lasting memories with her children. Her approach to life shifted to prioritize meaningful experiences.
She advises others to listen to their bodies and seek medical attention when symptoms persist. She stressed not taking loved ones for granted and valuing time spent with family over work. Through her journey, Kirsty aims to inspire others to cherish every moment and prioritize what truly matters.
Symptom: None; found the cancers during CAT scans for internal bleeding due to ulcers Treatments: Chemotherapy (capecitabine + temozolomide), surgery (distal pancreatectomy, to be scheduled) ...
Cancer details: Also known as urothelial (invasive), 5-10% of kidney cancers 1st Symptoms: Blood in urine Treatment: Nephrectomy (surgical removal of kidney and ureter) ...
Margie shares her journey with stage 1B, grade 3 endometrial cancer. Initially attributing her symptoms to menopause, she experienced persistent irregular bleeding for years. After consulting her OB-GYN and undergoing a biopsy and ultrasound, she was diagnosed with cancer, leading to a swift progression from diagnosis to surgery, which confirmed the cancer had not spread beyond the uterine walls.
Margie’s treatment included surgery, chemotherapy, and brachytherapy radiation. Despite facing challenges with healthcare providers and navigating the medical system, she sought multiple opinions to ensure the best care. She managed side effects with essential oils and naturopathic remedies, emphasizing self-care and symptom documentation. Margie’s story highlights the importance of patient advocacy, thorough medical documentation, and compassionate healthcare providers, serving as an inspiration for others facing similar battles and advocating for awareness and proactive health management.
For more support in endometrial cancer, visit our friends at ECANA.
Thank you to Karyopharm 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 live in Seattle, Washington. I’m single and have two adult girls and five grandchildren. I work with my oldest daughter at home as a grandma nanny. I do a lot of driving, preparing meals, laundry, and help around the house.
I’m the program director of ECANA: Endometrial Cancer Action Network for African-Americans. I facilitate one program twice a month. Right now, it’s chair yoga and conversations where we meet with Black women who have been affected by endometrial cancer. We provide a space to talk, share, and ask questions, and then spend 15 to 20 minutes doing some physical exercises to help people get back on their feet after their cancer treatments. That is one of my passions as well. I’m a fitness instructor, so I teach classes when I can.
I didn’t do anything about the bleeding because I thought it was part of menopause.
Pre-diagnosis
Initial Symptoms
I first started questioning that something might be going on with me when I was in the middle of menopause. When you’re going through menopause, you have all these different symptoms, like hot flashes and mood swings. You could have a cycle for two months and then not have one for three, and then have one for four months and not have it again, but you have to go one whole year without having any signs of blood.
I didn’t pay attention to my cycles, so I don’t know if I ever went a whole year without seeing any blood. I didn’t document it, so my strong suggestion is to document when you start your cycle and when it starts being weird, document how it was. When you’ve gone 12 months with no blood and then now there’s blood, go to your doctor.
I didn’t do anything about the bleeding because I thought it was part of menopause. I felt like I had a cycle every day. Nothing for two days and then I’ll have bleeding for a week, then nothing for 2 or 3 days and then bleeding again for three weeks. It went on for 2 to 3 years, but I was quiet about it.
The spotting and bleeding became heavier. I had no pain, but I just got tired of it and thought, This has to stop. I need to do something about this. On one of my visits, I mentioned it to my OB-GYN. I said, “Shouldn’t I be done? I feel like I’m spotting or I’m bleeding still. Should I still be bleeding?” She said, “Yeah, you should be done.”
Biopsy
My OB-GYN requested an ultrasound. Before I went, she took a biopsy sample in her office. She said, “It’s not going to hurt. It’ll be fine. I need to pull out a piece so I can send it to the lab because I feel like there’s something going on in here, but I’m not sure.”
It lasted only 10 minutes, but I asked her, “Am I going to be able to walk to my car when you’re done?” She was digging in my vaginal area, trying to pull something out. It was so painful. There wasn’t any pain after, but the whole process was horrible. I hope that procedure is better today than it was before. She sent me home with antibiotics.
‘They’re sending you to an oncologist? … Mom, they think you have cancer.’
Ultrasound
When I went for an ultrasound, the tech said, “The lining of your uterus is thick. We need to check that out. I’m going to set you up for an appointment with an OB-GYN oncologist. Make sure you bring somebody with you to that appointment.”
When I got home, I told my daughter. She dropped what she was doing, stared at me, and asked, “They’re sending you to an oncologist?” I said, “I think that’s what she said. OB-GYN oncologist.” She said, “Mom, they think you have cancer.” I said, “How do you know that?” She said, “Because you’re going to see an oncologist.”
She then asked, “Who’s going with you?” I said, “My friend Holly’s going to come with me.” She said, “Okay. Make sure you take good notes and find out what’s going on.” That was my introduction to the possibility of having cancer. Even after hearing that, I thought, I don’t have cancer. Calm down, people.
Diagnosis
Getting the Diagnosis
When I went to see the OB-GYN oncologist, he saw my ultrasound and I thought that he had the biopsy results. He was fast talking and had no bedside manners at all. It was so bad. I’m still like a deer in headlights and you’re telling me something’s wrong with me.
He said, “You might have cancer, you might not have cancer. You might have a carcinoma or you might not have one. You’re 58. You don’t really need all those parts. We’ll take everything out. We’ll have a complete hysterectomy. If we see any signs of cancer in there — we might or we might not — then we’re taking everything out.”
My friend who was with me said, “Excuse me. Can you slow down? Can you tell her what that means? She doesn’t know what you’re talking about.” In 15 minutes, I was on the table getting checked then I was over in the other room, making an appointment for a surgery.
He said, “We’ll know for sure after surgery. It might be, but it might not be,” and then he started naming off different kinds of cancers that it could or could not be. That’s the part I thought was weird. My friend was totally put off by him and said, “She needs her female organs. What do you mean she doesn’t need them anymore?” After making the appointment, she said, “You know you can cancel this if you need to.”
The surgery was supposed to take 2.5 hours but it ended up taking 4 hours… the tumor was too big.
Reaction to the Diagnosis
I was in shock and couldn’t believe it. It all happened so quickly. I was numb for about two months. Everything was a blur.
My youngest daughter, who lives in Chicago, said, “Let’s get the email strings going. Let’s find out what we need for care.” My friends started mobilizing. Then I realized that everybody was talking about me. It was me who’s going through this. I couldn’t see myself at that moment.
I was diagnosed with stage 1B, grade 3 endometrial cancer. The tumor stayed inside the uterine walls, but it was already 80% of it, so 20% more and it would have been out. I got my lymph nodes checked including all the surrounding areas to make sure. All of that came back clear. Thank you, Jesus. I was happy about that.
Treatment
Surgery
The surgery was supposed to take 2.5 hours but it ended up taking 4 hours. They went in laparoscopically and saw that the tumor was too big. They couldn’t get it out, so they ended up having to cut me a little to get it out, which extended the length of time that I was in surgery.
When I woke up, my daughter and some friends were in my room. I was still pretty groggy when the doctor came in. He said, “It stayed inside the uterine wall. We feel like we got it all. We did take some lymph nodes and stuff all around to double-check. We’ll get that back from pathology in about a week.” He said it was like everything dissolved in their hands when they were taken out. It was a relief to hear that he felt like he got it all. When I came in for my 10-day appointment, we received good news: everything was clear. I healed well from the surgery.
He was very calm, kept eye contact, and talked to me like I was a person instead of a number.
Discussing Chemotherapy & Radiation
I didn’t get a second or third opinion until after the surgery because my doctor said, “Let’s get it done and we’ll research as we go.” After surgery, they talked about treatments. At that appointment, he started throwing out information about chemotherapy and radiation. My insurance did not cover the chemo with that hospital, so I had to go to another hospital. He was saying I needed 6 to 8 rounds of chemo and 6 to 7 weeks of radiation to make sure because uterine cancers tend to hide.
Getting a Second Opinion
I was referred to the Fred Hutchinson Cancer Center in Seattle, Washington, for radiation. When I talked to the doctor, who was my second opinion about chemotherapy and radiation, he said, “I’ve looked at all your files and it looks like we’re going to probably do 4 or 5 rounds of chemotherapy and maybe 4 or 5 weeks of radiation after.”
He was the complete opposite of the other doctor. I was in his office for probably an hour. I had people with me who were taking notes. He was very calm, kept eye contact, and talked to me like I was a person instead of a number.
I met Dr. Kemi Doll, who was my third opinion and became my chemo doctor. She asked me questions and gave me time to answer. She went back to repeat what she already said to make sure I understood everything.
Getting a Third Opinion
My daughter, who lives in Chicago, was working and doing research as a professor at the University of Washington and UW Medicine. She met a doctor who knows the doctor who was going to be my chemo doctor. She’s emailing and texting me, “Mom, I just talked to so and so who’s going to hook you up with so and so. They’re going to call the office and then call you. You’re going to go see them because she’s an expert in this area.” That’s how I met Dr. Kemi Doll, who was my third opinion and became my chemo doctor.
She asked me questions and gave me time to answer. She went back to repeat what she already said to make sure I understood everything. She drew pictures. “This is this, this is this. If you don’t do chemo at all, here are the percentages that your cancer may or may not come back. If you do this much chemo, this is the percentage.”
She said, “We’re not going to do pelvic radiation. We’re going to do brachytherapy.” She explained what brachytherapy was and why. She said, “At your stage and from looking at all your records, this is preventative. Your chemo and radiation is all preventative. We want to make sure it doesn’t come back.”
I finally agreed to do four rounds of chemo and then brachytherapy. Dr. Doll said, “You’re way too anxious about the chemo, so we’re going to get it started as soon as possible.”
She said, ‘I have a feeling you’re going to do great. This is not going to be what you think it’s going to be.’ I was grateful to hear that.
Chemotherapy
At my first session, I didn’t have my port yet so I did it through the arm. My daughter from Chicago flew in. Dr. Doll showed up too. She said, “I have a feeling you’re going to do great. This is not going to be what you think it’s going to be.” I was grateful to hear that. Then she said, “I think you’re going to handle it well, but if you don’t, then we’re done. We’ll do brachytherapy and we can be done with the chemo.”
You have to get blood work done two days before a chemotherapy session to make sure that your platelets and your blood count are up. Otherwise, they can’t give you chemo. Before my last session, mine were low. They called me and told me to come in so they can give me a shot to boost the cells up and have my last chemo the following week. Then she said, “By the way, your insurance doesn’t cover it and it’s about $2,000.”
I said, “I’m good.” She said, “Are you sure? We’ll show you how to do it and then you go home and do it over the weekend.” I said, “No, thank you.” She wasn’t happy. She said, “If your temperature goes up, go to emergency. You’re very vulnerable right now because your immune system is low.”
I wore a mask for a week and that was in 2017. I immediately went to my list of foods because there are foods that help boost your immune system. I looked like I’m already eating lots of them, so I made sure to eat more, like twice a day. I protected myself and made sure that in the environment I was going in, nobody was infected with anything. I didn’t ignore what she said.
The next day, my doctor called me and said, “I talked to the nurse. She told me about her conversation with you and she told me your decision. I want you to know that this is your body. You make decisions for you. When you come for your last chemotherapy, they’ll do blood work right before to check and make sure that it’s at the level it needs to be. But if not, then we’ll skip it and wait another week. Or we could be done. It’s totally up to you. You decide whether you want to do that last chemo or not, or we can just call it. Let me know. Keep doing the stuff that you like to do for your own health. If you have any questions, call me or text me.”
I didn’t have one bout of nausea. I dealt with neuropathy and brain fog, not being able to focus on something for long periods of time.
When I went in for my last chemo, my girlfriend who went with me and I had two plans. We said, “If I don’t do chemo, we’re going shopping. If we do chemo, we’re going to high five and say, ‘This is the last one.’” After you check in, you sit in this little room and either they call your name or they walk over to you. They called my name, so I went right back and did my last chemo.
The nurse heard us talking and she said, “You mean you didn’t get the shots?” I said no. She asked, “What did you do?” The whole time, she was talking about my diet. I believe that the body is made to heal itself. Not that I don’t believe in all the other stuff, but I believe that and I was just done. I couldn’t give anymore.
Managing the Side Effects of Chemotherapy
I use essential oils, so I immediately checked to see which oils help with nausea. Nausea is one of the possible major side effects you could have from chemotherapy. And you know what? I didn’t have one bout of nausea.
I dealt with neuropathy and brain fog, not being able to focus on something for long periods of time. It takes away from who you know yourself to be. For the neuropathy, I soaked my feet, rubbed my feet, and wore good, comfortable shoes.
I also saw a naturopath once a month. Acupuncture helped with the nausea too, so I was grateful to have different avenues.
Because I felt good, I was pretty okay, but in the back of my mind, it’s always there.
Brachytherapy
The radiation was scheduled 6 to 8 weeks after surgery because complete healing time is about eight weeks.
Brachytherapy is internal radiation. They take a tube and put it right in your vagina.
When I went to my first brachytherapy appointment, they got me ready and put my legs up in the stirrup. They had everybody in the room to look: the interns, the specialists, and all that. I sat mortified. I’m glad I took a pill to keep me calm. Then he said, “I still see some blood up here. You are not completely healed.”
My first appointment was a wash. He kept apologizing and asked, “Where do you live?” I said, “Just down the street.” He said, “Oh, good because some people have to travel. Let’s give this two more weeks because this needs to be completely closed before we do any radiation.”
I came back two weeks later and by the end of February, I was done. I didn’t have any major side effects from brachytherapy.
Follow-up Protocol
I ended my chemo in February 2017. I saw Dr. Doll every three months. In 2018, I saw her twice a year. I went in every six months for blood work and checkups. In 2019, I saw her once and then I was good.
Because I felt good, I was pretty okay, but in the back of my mind, it’s always there. A month or two before the appointment, if I knew I was going to see her again, I would have to do a lot of deep breathing and checking myself physically, thinking, You know the signs, you know what to look for, and being aware of my own body. If I hear from her within the next 24 or 48 hours after my appointment, I wonder why. Each year got better.
The work that I do with ECANA helps, but sometimes it doesn’t because I feel like I’m constantly reliving that hard season of my life.
The only thing that still happens that’s annoying me are the sharp pains that I sometimes get in my wrist, my hands, or my feet, which I believe are side effects from neuropathy. They say it doesn’t really go away, but that’s about it.
Don’t let a doctor dismiss you or tell you that what you’re experiencing is all in your head. If they don’t have an answer, find someone who does.
Words of Advice
If you start going through menopause and your cycle starts going crazy, document everything. If you have not had your menstrual cycle in more than 12 months and then all of a sudden, you have a cycle or see blood, go see your doctor. That is the strongest message from my journey that I speak loudly about because I didn’t know to do that. I didn’t keep a journal. I didn’t pay attention. I figured I was in menopause so when it’s done, it’s done.
Find a doctor who you like, who’s going to listen to you, and who’s not going to dismiss you. It’s not okay for a doctor to presume what you’re feeling and what you’re going through. They’re supposed to listen to you.
As the patient, you are the most important person in the room. When I was at the 2024 SGO Annual Meeting in San Diego, I saw a black and white picture on a screen that said: as a doctor, if you listen long enough to your patient, they’ll tell you what’s wrong with them. Make sure the doctor listens to what you have to say. You’re not just another number.
For years, I’ve thought that the doctor knows everything. No, the doctor doesn’t. All the doctor knows is the book. You know you. Don’t let a doctor dismiss you or tell you that what you’re experiencing is all in your head. If they don’t have an answer, find someone who does. If the doctor doesn’t have your respect, leave and find one you can. That’s so important. It’s you that you’re talking about, it’s your health. You have to be able to communicate in a way that’s clear and where you feel like you’re being heard.
Special thanks again to Karyopharm for its support of our independent patient education content. The Patient Story retains full editorial control.
Navigating the Latest Metastatic Colorectal Cancer Treatments and Clinical Trials
Edited by: Katrina Villareal
Please watch the above video replay then take our program survey.
Allison Rosen, a colorectal cancer patient advocate, talks with leading oncologist Dr. Cathy Eng from Vanderbilt-Ingram Cancer Center. Gain valuable insights into the latest advancements in the treatment of metastatic colorectal cancer and a deeper understanding of the current treatment landscape, including the most recent FDA-approved therapies that are making a difference.
Learn how biomarkers are revolutionizing the approach to treating metastatic colorectal cancer, potentially leading to more personalized and effective treatment plans. Discover emerging therapies and the most promising clinical trials available, offering new hope and options for patients. Equip yourself with the knowledge to collaborate effectively with your medical team, ensuring the best possible outcomes and quality of life.
We’d like to thank our promotional partners for their continued support of our programs. Please visit the Colon Cancer Coalition and Colontown to learn more about the important work they are doing.
Thank you to Takeda 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.
Stephanie Chuang: I’m a blood cancer survivor and the founder of The Patient Story, which I started out of my own experience. I had so many questions and all I found was medical jargon and outdated statistics.
Our goal at The Patient Story is to help patients and care partners navigate life after a diagnosis. What does this mean in human terms? We do this primarily through in-depth patient stories and educational programs. We hope to help connect patients and families to information about topics like self-advocacy and the latest treatment options, which is especially important in colorectal cancer. It makes a difference how early someone can get a diagnosis, how much people know about what’s available to them, and what questions they can ask their healthcare providers.
We want to thank Takeda for its support of our independent educational program, which helps us host more of these free programs for our audience. The Patient Story retains full editorial control of the content. We also want to thank our promotional partner, the Colon Cancer Coalition.
While we hope you walk away with more knowledge, this discussion is not a substitute for medical advice so please consult with your healthcare team.
It’s my pleasure to introduce Allison Rosen, a very well-known and respected individual in the colorectal cancer advocacy space and someone I’m lucky to call a friend. Thank you so much, Allison, for joining us.
Allison Rosen, Patient Advocate
Allison Rosen: I’m a 12-year stage 2C colorectal cancer survivor and a very passionate patient advocate. My treatment consisted of surgery, radiation, chemotherapy, more surgery, and ultimately, a permanent ostomy.
I wanted to meet other young people like me who were diagnosed with colorectal cancer because I felt very alone when I was first diagnosed. When I was being treated at MD Anderson, I asked to talk to another young adult. She was very active in advocacy and introduced me to the advocacy space. Now I volunteer with a lot of national and local advocacy organizations. I get to work with amazing clinicians, researchers, and doctors to help provide the patient perspective.
Dr. Cathy Eng: You are so fortunate to be diagnosed with stage 2 because, unfortunately, most young adults are diagnosed with a much more advanced stage. Stage 2 is a very unique setting because it’s extremely early with regard to prognosis. For the majority of patients, surgical resection is curative. I’m so glad to have you here with us today.
Allison: Thank you. It’s interesting because the reason why I’m so active is because I’m alive. I have a purpose and my mission is to be a part of things like this educational program to talk about what is out there, so people who may not have access to what I had access to can get current information and the best possible treatment.
Dr. Cathy Eng, Medical Oncologist
Allison: Dr. Cathy Eng is the David H. Johnson Endowed Chair in Surgical and Medical Oncology at the Vanderbilt-Ingram Cancer Center. She’s also the co-leader of the Gastrointestinal Cancer Research Program, co-director of GI Oncology at Vanderbilt, the executive director of the Young Adults Cancers Program, and co-chair of the NCI GI Steering Committee. Dr. Eng, what drew you to this field?
Dr. Eng: What drew me is individuals like yourself. I had a very, very large clinic when I used to work at MD Anderson and I was seeing patients as young as 16. These patients do not have an inherited form of colorectal carcinoma. The majority have sporadic colorectal cancer and, unfortunately, they were showing up in my clinic with very advanced diseases, stages 3 and 4. It’s hard not to be able to appreciate all the hurdles that a young adult has to go through in order to go through their treatment with success and hopefully few toxicities. It’s that communication with the patient and that lives with you as a physician.
Allison: I know many people who are part of the Young Adult Cancers Program and many people who have gone through it. I appreciate everything you’re doing for the young adults who are going through treatment and, unfortunately, the future young adults who will go through treatment. You have to treat the patient as a whole. Things like fertility and body image are so important along with chemotherapy and radiation.
Dr. Eng: Thank you. I want to thank you also for helping promote education and awareness. We don’t know the exact etiology of why this is happening, but in the interim, we can continue to promote awareness so people can be diagnosed earlier.
Allison: Awareness is key.
You don’t need to remove your primary tumor to improve overall survival. In fact, it does not improve overall survival and that’s important to keep in mind.
Dr. Cathy Eng
Latest Treatment Options for Metastatic Colorectal Cancer
Allison: As an advocate, I’ve seen that progress is being made in treating metastatic colorectal cancer, but it’s still challenging. What are the latest treatment options?
Dr. Eng: Oxaliplatin-based and irinotecan-based treatments are still commonly utilized for patients who don’t have a particular molecular marker. We have to recognize that it’s still important to be in contact with the patient because in combination with a fluorouracil-based therapy, those regimens are still the foundation of basic treatment.
Over the past two years, one thing that came out was looking at tumor-sidedness. A patient with a left-sided tumor has a better prognosis overall than a right-sided tumor for a non-inherited form of colorectal cancer. If the patient is RAS wild-type, the data shows that you would probably benefit from anti-EGFR therapy in combination if you’re considering irinotecan- or oxaliplatin-based therapy and that has been shown to improve overall survival. Not everybody loves EGFR therapy because it causes a significant rash, but there are benefits to considering that type of treatment.
A RAS mutation is very common in up to 60% of all colorectal cancer patients. We’re getting so specific that we’re asking what type of RAS mutation you have with regard to KRAS.
Patients ask if they need to have their primary tumor removed because they have metastatic disease. It’s not like breast cancer where you need to have your primary tumor removed to reduce your tumor burden. That doesn’t benefit a colorectal cancer patient with metastatic disease.
A pooled analysis came out in the Journal of Clinical Oncology. Three presentations from countries all across the world indicated that you don’t need to remove your primary tumor to improve overall survival. In fact, it does not improve overall survival and that’s important to keep in mind.
Sometimes we hear from patients that they’re told they have to remove their primary tumor. You shouldn’t have to unless you have uncontrolled bleeding, near obstruction, or a high risk of perforation. We don’t encourage that for all comers in general. For a rectal cancer patient, if you’re having symptoms, we can give short-course radiation therapy to help alleviate some of those symptoms despite having metastatic disease.
HER2-Targeted Therapy Combination
Dr. Eng: Tucatinib is the most recent drug that has been approved, which is an oral tyrosine kinase inhibitor of HER2 that prevents downstream phosphorylation and involves the EGFR pathway. These are for patients with RAS wild-type and most often have left-sided tumors.
The best part about the tucatinib study, which shows the relevance of having a rare mutation, is it got FDA-approved based on a small phase 2 study. It wasn’t a giant phase 3 study and that’s important to keep in mind. It showed that these patients, despite heavily being heavily pre-treated, had a great response rate. Progression-free survival was excellent and the overall survival was close to two years.
HER2 testing is one of the newest things to be considered. We’re very familiar with it in gastric cancer and breast carcinoma, but this is the first time looking at it in metastatic colorectal cancer and making sure that all patients get tested for HER2. It’s extremely important to look at the role of HER2. We have seen that looking at HER2 amplification, which is present in approximately 4% of our patient population, is very, very important.
Looking at HER2 amplification, which is present in approximately 4% of our patient population, is very, very important.
Dr. Cathy Eng
Fam-Trastuzumab Deruxtecan-nxki (ENHERTU)
Dr. Eng: The new drug deruxtecan is an antibody-drug conjugate. It isn’t necessarily new with regard to its presentation but in the sense that it just received tumor-agnostic approval, so it’s approved for colorectal cancer and other tumor types.
It does best in the IHC 3+ patient population, but it has a benefit with regard to progression-free survival and overall survival. What’s unique about deruxtecan is that the original study that resulted in its approval allowed patients who received prior HER2-based therapy. You could have had tucatinib, pertuzumab, or lapatinib, but you can receive deruxtecan as a single agent.
They’re moving the G12C inhibitors in combination with chemotherapy to the front-line setting.
KRAS G12C inhibitors don’t work by themselves. They were evaluated by themselves with a less than 10% response rate. In combination with anti-EGFR (epidermal growth factor receptor) therapy, the combination resulted in an improved benefit for patients. Although it’s not FDA-approved at this time, if you’ve been previously treated, you can inquire about receiving it in combination with anti-EGFR therapy.
They’re moving the G12C inhibitors in combination with chemotherapy to the front-line setting. In the HER2 setting with newly diagnosed patients, they’re also looking at tucatinib in combination with oxaliplatin-based therapy. The fact that we’ve found molecular alterations that have been positive studies in the refractory setting is exciting. We’re now moving into front-line therapy to see if that is more advantageous for our patient population.
BREAKWATER Trial
Dr. Eng: BREAKWATER is a phase 3 trial for BRAF V600E mutation tumor types, which is about 9% of all of our patients. Encorafenib and cetuximab were approved in the previously treated setting and are now being moved up to the front-line setting in combination with oxaliplatin-based therapy. I’m one of the investigators on that trial and there’s another arm that’s open, which is in combination with irinotecan-based therapy.
I hope that we will continue to move these rare molecular alteration subtypes earlier on in development because we can get greater outcomes. We hope to improve and break the barrier of overall survival, which is currently about 35 to 37 months for the majority of our patients.
For any metastatic patient, the very first thing they need to ask is their molecular sequencing. It’s critical because it helps create a treatment plan.
Dr. Cathy Eng
Trending to More Personalized Treatment
Allison: You talked about the KRAS, HER2, and BRAF mutations, and about treatment being driven by a particular mutation. Why is biomarker testing important? What would you tell a patient if their doctor hasn’t necessarily brought it up?
Dr. Eng: For any metastatic patient, the very first thing they need to ask is their molecular sequencing. It’s critical because it helps create a treatment plan. Previously, we would look at all metastatic colorectal cancer patients as the same and that’s not the case. Having a molecular marker can make a big difference because it can prevent you from receiving unnecessary toxicities and costs.
KRAS- and EGFR-Targeted Therapy
Dr. Eng: The most pivotal one was looking at KRAS and anti-EGFR therapy, such as panitumumab and cetuximab. That class of drugs causes a rash in 80 to 90% of patients and depending on where you live, you’re also at a higher risk for having an allergic hypersensitivity reaction to cetuximab.
Bevacizumab
Dr. Eng: Bevacizumab is an IV drug that’s involved in anti-angiogenic therapy. Anti-angiogenesis or anti-VEGF (vascular endothelial growth factor) therapy means it’s working on the blood supply. Our goal for this class of drugs is to reduce the development of metastatic disease because a tumor needs a blood supply to survive and thrive.
FRESCO-2 Trial
Dr. Eng: When we designed FRESCO-2, it allowed almost all comers. Patients were allowed to have received prior TAS-102 (trifluridine/tipiracil) and that was before the approval with bevacizumab in combination. They also could have received regorafenib, which has been approved for quite a while now. Patients may have been exposed to either or both of the drugs. It was a trial that allowed almost all patients to participate with the median line of four prior lines of therapy.
Fruquintinib was compared to a placebo. It was a 2-to-1 randomization. Some people criticize the fact that there was a placebo arm, but there’s no standard of care for fourth-line or fifth-line therapy, so there was nothing to compare it to. Some people say, “Can’t you go back to 5-FU (fluorouracil)?” But the reality is patients have already progressed through 5-FU, so they’re not going to be receptive to 5-FU.
The primary endpoint was met with an improvement in overall survival as well as progression-free survival.
The FDA approval allows patients to receive oral fruquintinib as a potential option for third-line therapy and beyond.
Dr. Cathy Eng
Fruquintinib (FRUZAQLA) Approved by FDA
Allison: With the recent FDA approval of fruquintinib, how can it help address an unmet need in the metastatic colorectal cancer treatment landscape?
Dr. Eng: It’s a drug that I helped bring to the United States. I was involved in the original trial as the senior investigator. This drug is an oral agent, which specifically blocks receptors 1, 2, and 3 of the VEGF pathway. It was originally approved in China in the third-line setting based on a phase 3 trial called FRESCO that was conducted overseas.
FRESCO-2 is specifically trying to address the practice patterns of what we are doing in the United States, which is continuing bevacizumab for front-line and second-line therapy but also trying to ensure the majority of patients had received anti-VEGF therapy as part of treatment, which was the case in 97-98% of patients who participated in FRESCO-2.
Based on the results of both FRESCO and FRESCO-2, the FDA approval allows patients to receive oral fruquintinib as a potential option for third-line therapy and beyond.
Overall, it was tolerated fairly well. Hypertension is an issue with this class of drugs, but it’s treatable. It got approved in November and we are very pleased to see the FDA approved it. It’s pending the European Medicines Agency’s approval as well as approval in Japan. After that, hopefully, it will be approved internationally so all patients can get access.
At the end of the day, the reality is you need to make sure you have drugs available to the patient. When you ask, “Do you prefer FOLFIRI (folinic acid, fluorouracil, and irinotecan) or FOLFOX (folinic acid, fluorouracil, and oxaliplatin)?” The reality is you’re going to get both regimens. What matters is how well you tolerate the treatment and how you derive the best benefit.
I try not to make it very competitive. I don’t think it benefits anybody. It’s important to recognize that there’s a new drug on the market, it’s available for patients, and it does not require IV therapy.
In a prior study, it was seen that if you have the RAS mutation and receive anti-EGFR therapy, it’s no better than receiving a placebo.
Dr. Cathy Eng
Biomarkers (“Molecular Markers”)
Dr. Eng: There’s a lot of interest with regard to other molecular markers, like a patient’s KRAS status and mutation. KRAS G12C inhibitors are further along in development than G12D. Granted, G12C in colorectal carcinoma is less than 5% of our patient population, but once those patients are identified, they may benefit from therapy.
Importance of Biomarkers
Dr. Eng: The KRAS mutation is in about 30 to 60% of all colorectal cancer patients. In a prior study, it was seen that if you have the RAS mutation and receive anti-EGFR therapy, it’s no better than receiving a placebo. Why would you want to subject your patient to toxicity, a potential allergic reaction, and extreme financial costs if it doesn’t benefit them?
Different Biomarkers
Dr. Eng: KRAS was just the beginning. We are now identifying all these new molecular subgroups, such as HER2, BRAF, and microsatellite instability-high (MSI-H), which is extremely important with regard to the role of immunotherapy. That’s another small patient population, less than 5% of our patients, but that’s where immunotherapy may benefit our MSI-high or mismatch repair protein deficiency (MMR-d) patient population where immunotherapy can have a significant role in potentially curing them.
Tissue molecular sequencing can look at hundreds and hundreds of various molecular alterations, mutations, or amplifications… Information from the blood can be critical in identifying a suitable clinical trial.
Dr. Cathy Eng
Tissue vs. Blood Samples in Biomarker Testing
Dr. Eng: Molecular sequencing can be obtained from tissue and blood. If you’re newly diagnosed, it’s important to send off that tissue as soon as possible before it gets sent off to some warehouse because it can’t sit in the pathology department forever.
Depending on which panel you use, tissue molecular sequencing can look at hundreds and hundreds of various molecular alterations, mutations, or amplifications. Blood sequencing is quicker. You can get it back within less than two weeks, but you’re only looking at 100 different mutations relative to the 500 or so plus potential molecular alterations.
Some places still do it in-house, but the majority of institutions send it out to a third party. Ask for tissue and blood to be sent off because the information from the blood can be critical in identifying a suitable clinical trial for the patient as well. I cannot emphasize enough the importance of participating in clinical trials.
Allison: I’m very, very passionate about access to clinical trials, education for clinical trials, not being scared, and not thinking that a clinical trial means you’re going to die.
Dr. Eng: Every single FDA-approved drug came from a clinical trial.
Allison: Exactly. It’s the point that I make as an advocate all the time.
Choosing Among Different Treatment Options
Allison: Where do you see fruquintinib fitting in with the current therapies available for metastatic colorectal cancer? Is there a potential for it to be used as a maintenance therapy?
Dr. Eng: My understanding is it’s being investigated as a maintenance therapy. It makes a lot of sense since the majority in the United States use capecitabine, bevacizumab, or 5-FU with bevacizumab for maintenance therapy, so it would make sense to consider this as a potential maintenance therapy.
When thinking about it relative to other agents, such as regorafenib and TAS-102 plus bevacizumab, I talk to the patient. I utilize TAS-102 plus bevacizumab quite a bit. However, some patients are tired of coming in every two weeks for bevacizumab. They want a break and that’s very reasonable.
With TAS-102, they’re at risk for myelosuppression, so their white blood cell count can drop. That’s a known side effect of that class of drugs, so the patient has to be compliant and not take medications incorrectly. You don’t want a neutropenic patient walking around at risk for other infections.
I don’t offer TAS-102 to certain patients. I had an elderly patient whose platelet count was never above 100,000. He had been on a lot of therapies and came to me for a second opinion. I would be hesitant to give him TAS-102 because I know that his platelet count is going to be a problem, so I chose fruquintinib for him first. Once again, I don’t try to choose one versus the other. I talk to the patient about the potential side effects and see what they’re willing to endure.
Allison: It’s all about shared decision-making. You know about what’s going on and having that conversation with your physician is very, very important.
Emerging Clinical Trials for Metastatic Colorectal Cancer Patients
Dr. Eng: For the MSI-high patient population, there should be some updates soon regarding NIVO+IPI (nivolumab and ipilimumab). They presented their data at the 2024 ASCO GI (American Society of Clinical Oncology Gastrointestinal Cancers Symposium) looking at NIVO+IPI in combination versus chemotherapy and that was superior, but it was a very rapid abstract presentation, so we don’t have further details. I think there’s going to be an update at the 2024 ASCO, so I look forward to that. Are two immunotherapies better than one for this patient population? What about toxicities? It will be interesting to see.
The CodeBreaK 301 trial is looking at the role of sotorasib, a first-generation KRAS G12C inhibitor, in the upfront setting. Sometimes the next generation may be even better, so I’m looking forward to those trials as well.
EA2222 (PUMP) Trial
Dr. Eng: The PUMP trial is a new NCI-sponsored study specific for newly diagnosed patients. They will get randomized to having the PUMP versus continuing chemotherapy.
This is an important trial that will answer that question. We know all the data from Memorial Sloan Kettering, but can we validate and replicate that data outside of that institution, especially in an earlier line setting?
ERASur Trial
Dr. Eng: The ERASur trial is another NCI-sponsored study that looks at the role of stereotactic radiation therapy, ablation, or some type of liver-directed intervention to improve overall survival.
MOUNTAINEER-03 Trial
Dr. Eng: The MOUNTAINEER-03 trial is looking at tucatinib with trastuzumab in the front-line setting.
We cannot make breakthroughs until we get trials completed. It’s very, very important to keep in mind that not all trials involve a placebo.
Dr. Cathy Eng
Importance of Participating in Clinical Trials
Allison: We touched on the importance of clinical trials, but do you have any message about the importance of participating in clinical trials?
Dr. Eng: Focusing on metastatic disease, I encourage all patients to consider participating in a clinical trial. Currently, enrollment across the United States is about 7% for non-NCI cancer centers and up to 20% for NCI-designated cancer centers. We cannot make breakthroughs until we get trials completed. It’s very, very important to keep in mind that not all trials involve a placebo.
All patients should consider getting a second opinion if they haven’t been offered a clinical trial. There are some selective settings where there is no clinical trial available, but you should have that discussion with your provider on your first or second meeting.
It doesn’t take that long to get a second opinion. You want to look at all your options and feel informed. That’s extremely important as a patient and the best way to optimize your care. As a medical oncologist, it’s very, very distressing when I meet a patient who received one cycle of chemotherapy before they walked into my office and find out they would have been a perfect candidate for a clinical trial but now they’re automatically disqualified.
Allison: Knowledge is power. There are so many amazing trials and the first step is educating yourself on clinical trials. There are a lot of advocacy groups and organizations that are trying to educate patients on what a trial is and having that conversation with their doctors. It’s so important because the last thing you want to do is disqualify yourself for a trial because you did something here versus going there.
Because of my age, I got three different opinions before I decided on where I was going to get treated. For the younger people especially, talk to as many people as you can and educate yourself as much as you possibly can. This program is an amazing start for people to better understand that there are options.
Get a second or a third opinion. I’m not telling you to delay your treatment by months, but give yourself 2 to 3 weeks to make an informed decision by getting another opinion.
Dr. Cathy Eng
Final Takeaways
Allison: What message do you have for metastatic colorectal cancer patients? I always tell them that their lives aren’t over. There are treatment options available. I know quite a few people who were stage 4 who are now in remission.
Dr. Eng: I hear time and time again that they’ve been given a poor prognosis of 6 to 8 months to live; that’s very discouraging and not the right approach. We have so many new options available. Science has advanced so much. If you hear that kind of negative attitude at your first meeting with your physician, you need to go get a second or a third opinion. I’m not telling you to delay your treatment by months but give yourself 2 to 3 weeks to make an informed decision by getting another opinion.
Allison: I agree. The relationship you have with your care team is important. It can spell the difference between a lot of different things that can happen along a journey.
Dr. Eng: It’s also important for people to keep in mind that there’s always hope.
Allison: I was originally diagnosed with stage 3 and they said it was about to break through my colon wall. There’s so much going on and so much information you’re getting when you’re first diagnosed. Talking to someone else who’s gone through it gave me hope. It differs with every stage. I know people who are 20-year stage 4 colorectal cancer survivors. That’s the hope that someone needs.
Dr. Eng: Your medical oncologist is key. Your radiation oncologist and surgical oncologist are always there, but the captain of your ship, besides your primary care doctor, is your medical oncologist.
Allison: You are an amazing captain of the ship. I know this from hearing from many people and knowing you for as long as I have. Thank you so much for your time and for sharing invaluable information.
Stephanie: Thank you so much, Dr. Eng, for what you do in terms of research, which is critical to advancing care, and the way you’re thinking about patients. Thank you also to Allison for the work you do in advocacy and leading this program, which wouldn’t be the same without the patient perspective.
Thank you to our promotional partner the Colon Cancer Coalition, which was founded by someone who lost her sister to stage 4 colorectal cancer. The Colon Cancer Coalition is celebrating its 20th Get Your Rear in Gear fundraiser in the Twin Cities in Minnesota with other rides and fundraisers happening across the country as well. These fundraisers highlight the need to screen and raise awareness of colorectal cancer. The organization gives more than $1 million every year to local community programs to help fill that need.
We hope that you walk away with a better understanding of what’s out there and something to talk to your own healthcare team about. We hope to see you at a future program.
If you read and/or watched our program, we encourage you to take our program survey to help us improve future programs and answer your questions.
Special thanks again to Takeda for its support of our independent patient education content. The Patient Story retains full editorial control.
Interviewed by: Taylor Scheib Edited by: Katrina Villareal
Ben was diagnosed with essential thrombocythemia in 2012 and myelofibrosis in 2023. His ET was discovered during a pre-employment exam that revealed high platelet counts. Initial treatment with hydroxyurea managed his condition, though he experienced kidney issues. Seeking more information, Ben educated himself about ET and later learned about the CALR mutation through a second opinion.
As his symptoms intensified, Ben’s care was transferred to a new hematologist, leading to a myelofibrosis with CALR mutation diagnosis in 2023. Despite significant scarring in his bone marrow, his treatment remained largely unchanged. With an increased symptom burden and feeling unhappy with his doctor’s response, Ben sought a second opinion. His new doctor switched him to ruxolitinib, significantly improving his quality of life.
Ben became an advocate for himself and others, emphasizing the importance of seeking second opinions and connecting with specialists. He joined the MPN Research Foundation’s Patient Impact Council, connecting with other patients and professionals. Grateful for the support from his family, medical team, and the myeloproliferative neoplasms (MPN) community, Ben continues to advocate for better patient education and support. He stresses the importance of patient advocacy and utilizing available resources for support and information.
Thank you to Sobi for its support of our patient education program! The Patient Story retains full editorial control over all content.
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
Name: Ben H.
Diagnoses:
Essential Thrombocythemia (ET)
Myelofibrosis (MF)
Mutation:
CALR (calreticulin)
Initial Symptoms:
None; caught at a routine blood test
Treatment:
Hydroxyurea & aspirin
Ruxolitinib
I have myelofibrosis [with CALR mutation] but, other than that, I’m healthy and can enjoy things.
I’m married with two kids. My oldest is in college and my youngest recently turned 16. They certainly keep me busy along with other family activities.
I was diagnosed with essential thrombocythemia (ET) in 2012 and with myelofibrosis (MF) in 2023.
When I first was diagnosed, there wasn’t a lot of information provided. I was told I had ET and what it was. I did a lot of research on my own.
Essential Thrombocythemia
Initial Symptoms
I found out about it by chance. I had recently switched jobs and was going through pre-employment exams. My blood test results showed that my platelets were extremely high, about 1.2 million at the time. My platelet count was anywhere from 1.2 to 1.5 million. It didn’t keep me from being employed, but they recommended that I follow up on it. I had initial follow-ups with my primary care physician who recommended that I see a hematologist.
Official Diagnosis
I went to a local hematologist from where I’m from, which is a rural area. We did a bone marrow biopsy. They said I had essential thrombocythemia but at that time, they didn’t know the driver mutation.
Treatment
I began treatment with hydroxyurea. We were managing my blood counts and able to stay in the 600,000 to 800,000 range. It’s the sweet spot for me where we weren’t suppressing anything else too much. I managed with that for a number of years.
Side Effects of Hydroxyurea
It was pretty unremarkable at first, but I did have some significant side effects. Initially, I had issues with my kidneys. It was a learning experience for me. I needed to stay much more hydrated to keep everything flushed.
It didn’t feel like there was any plan. I didn’t know if there was anything I needed to watch for or if I needed to do anything differently.
Learning About ET
When I first was diagnosed, there wasn’t a lot of information provided. I was told I had ET and what it was, but I had to do a lot of my own research to figure out what it was and to explain the diagnosis and its impact to my family and friends. I was told that this would be something that I would die with not die from.
I didn’t think too much of it. I continued with the same hematologist for a period of time. There wasn’t a lot of interaction. It was mostly regular blood work and going to see the hematologist. I was kept on hydroxyurea and was told that we’ll adjust as needed. It didn’t feel like there was any plan. I didn’t know if there was anything I needed to watch for or if I needed to do anything differently.
Getting a Second Opinion
Fortunately, my dad had some contacts through his work. I talked to the head of the hematology group at the hospital that I was visiting and he said that if I wanted to get another opinion, he could hook me up with another location. This is a larger cancer institute that has people who deal more with some of these rare blood cancers.
I connected with a hematologist down there. A couple of years has transpired at this point. I met with the new doctor and went through everything. They got everything sent down, including my original bone marrow slides. They reviewed everything and re-ran some of it.
When I was doing physical activity, I would notice the fatigue and sweating more than before.
CALR Mutation
I learned about the CALR mutation. They explained what it was and its impact. It was more favorable than other mutations, so that gave me some level of comfort.
It didn’t change a whole lot, even with treatment. There was a lot of adjusting as blood counts changed. I took anywhere from 500 mg of hydroxyurea a day up to 2,500 mg plus two baby aspirin.
Symptoms Intensified
When I was doing physical activity, I would notice the fatigue and sweating more than before. It was primarily driven by the blood counts. Nobody tells you about it. Why is it completely different all of a sudden? What’s changed? I managed it pretty well by knowing my limits on different things.
Myelofibrosis with CALR Mutation
New Hematologist
My physician moved to Vanderbilt, so I had my care transferred to one of her colleagues. The transition went well. As we went along, something in the blood work made her decide that we needed to take another look.
At first, it wasn’t bad. There wasn’t a lot of impact. But all of a sudden, I started getting a lot of fatigue and night sweats.
Official Diagnosis
I had my second bone marrow biopsy in 2023 and found out that I had myelofibrosis. What’s great was getting the information in real time as the results came back from different tests, so I was able to research. My son is studying to be a pharmacist, so he was pulling up information as well and we were comparing notes. By the time I had the appointment with my physician, I had a good idea of what was going on.
On the scale of 0 to 3, the fibrosis was in the grade 3 range, so I had a significant amount of scarring in the bone marrow. The treatment wasn’t going to change. I was staying on hydroxyurea and baby aspirin. I was told, “We’ll keep monitoring it. Let us worry about the bad stuff. You keep on living your life.”
Symptom Burden
At first, it wasn’t bad. There wasn’t a lot of impact. But all of a sudden, I started getting a lot of fatigue and night sweats, a lot of the symptom burden that was coming with myelofibrosis.
When I had an appointment with my doctor, I met with the physician’s assistant and went through all the symptoms and the impact on me being able to do things. I was falling asleep by 7 to 7:30 in the evening because I was completely drained after being at work all day.
If I worked in the yard, I’d be going back inside after a couple hours to take a nap because I was physically drained and exhausted. Their response was, “Well, sometimes you just have to deal with it.” I said, “Yeah, you know what? You’re right,” so I dealt with it my way.
Getting a Second Opinion
I reached out to people who I worked with at one of the research foundations and they had contacts throughout the MPN community. I was looking for other options to get a second opinion and was given a number of different places and different physicians.
I made an appointment. My wife goes to a number of things with me. My parents asked if they could come along, so I said, absolutely, come on.
My new physician explained everything from the very beginning with the ET all the way through MF and what MF could become. They explained not just to me but to my family and made sure that there was an understanding that this is what’s going on and this is what we do to treat it.
We talked through different clinical trials and different medications that were available. We went through the symptoms and some of the things that I was dealing with. My hemoglobin was pretty low at the time; I was in the 8 to 9 range.
We were looking at one medication that was getting ready to come to market versus other ones that were available. It kept getting delayed. They said, “Let’s switch medications now and if we need to switch again, we will, no problem. But let’s get you on something different now.”
Switching to Ruxolitinib
I made the switch and started on ruxolitinib. It was amazing how quick the symptom burden was reduced. I was able to stay up in the evenings and watch movies without falling asleep. From a quality of life perspective, it was far greater than with the other treatments.
I’m not an expert, but I knew enough to know that there are other options and for those not to be part of the conversation was very, very frustrating.
Patient Advocacy
I was a strong advocate not only for myself but for other patients as well. There are people who don’t have the resources within a reasonable distance to see some of the MPN specialists or may not know who to reach out to for additional input or help.
If we look at how many people are going through something similar, how many cases do some of these hematologists see? I may have been the only one they’ve ever seen with this condition. They may have read about it, but it’s not common. It’s important to make sure that physicians have all of the information available. Personally, I wasn’t satisfied with the doctor saying that they have things covered. I want to know.
There was some frustration at times. When I hit the roadblock of being told to just deal with it, I was informed enough. I’m not an expert, but I knew enough to know that there are other options and for those not to be part of the conversation was very, very frustrating. I left that appointment feeling very unhappy and almost abandoned. You’re putting your trust in your provider and for them to tell you to just deal with it, I’m sorry, but I want something better.
Learning About MPNs
All the way back, even from the ET perspective, I was trying to figure out what it was. At the time, they didn’t even talk about it as blood cancer. It was still a neoplasm. They didn’t elaborate that this was what’s going on. We did a lot of research trying to find out things.
I was connected with some of the folks at the MPN Research Foundation. There are a number of online resources that provide factual information. It’s a balancing act. What are you seeing online and what’s correct?
As I was seeing the results come back, they listed what articles they were citing for the diagnosis, so I found the articles and read them. Because I’m not in the medical field, there are words I’ve never seen before in my life. What do these words mean? Is that good or bad? I was pulling together resources on my own.
Connecting with the MPN Community
I stumbled across and got involved with the MPNRF Patient Impact Council. It was through some of those contacts that led me to other recommendations for where to go.
It was nice being involved with other patients and having conversations. Even though a number of us have had the same diagnosis, there may be different genetic mutations so there are little differences on how it impacts everybody. Having somebody to talk to has been fantastic because you can hear about other people’s journeys, what they went through, treatment options, or things that I’m not aware of that some of my peers would be dealing with.
We have a group where we can sit back and laugh. Everybody was joking about things and having a good time. You’re with people who understand what you’ve gone through, what you’re going through, or people who have gone further through things.
Stem Cell Transplant
After my myelofibrosis diagnosis, we had conversations about stem cell transplant. Although I didn’t need it yet, we did the work to make sure we have things lined up. In the event that there’s a bone marrow failure, I progress into acute myeloid leukemia (AML), or things don’t go as well as we would like them to, we have options.
I went through the matching process and I was very fortunate to have my brother as a full match. We have multiple people on the donor registry that are full matches for me as well, so the prospect is very good in that avenue.
One of my peers who I’ve spent time with is not as fortunate. He has progressed very far through myelofibrosis and has zero matches. You see other people like him who go through struggles. If there’s anything that I can do to help advocate for people and make it easier for the next person, I’m certainly all for it.
We talk about clinical trials at every appointment. We talk about the ones that are currently out there, some that are coming, and why I would or would not be eligible for them.
Clinical Trials
Cleveland Clinic is one of the major centers that has some of the clinical trials. I’m fortunate to be fairly close and to have access to some of the experts in the field. We talk about clinical trials at every appointment. We talk about the ones that are currently out there, some that are coming, and why I would or would not be eligible for them.
It’s balancing risk versus the reward. It’s not necessarily the reward for me but to the larger community. I’m benefiting from medication that other people went through a clinical trial on. If a clinical trial is available and if it fits with what you’re looking for, advocate for that.
Follow-up Protocol
I have follow-up visits and routine blood work every three months. Where I work, we have a clinic on site that can do my blood draws, so I send the results to Cleveland Clinic and my physician for review.
I don’t need to physically go to the Cleveland Clinic every time. I’ve been able to do remote visits, which is quite a time saver. It takes me about three hours to get to the Cleveland Clinic from where I live, so it’s not overly burdensome, but it’s not the most convenient either.
The plan moving forward is to monitor the blood counts and make sure to communicate with the physician if the symptoms return. They are very responsive.
I’m in the middle of switching providers not because I’m unhappy or there were any issues, but because my current physician has taken a different role within the leukemia division and will be handling inpatient care only. I would be happy if I saw him, but I hope I don’t need to. Transitioning care is a very seamless process. They work with you right through it.
I’ve put myself out there by getting involved with different organizations. It’s through those things that I get access to people who are in the know.
Patient Education
From a broader perspective, through the work I’ve done with the MPNRF Patient Impact Council, I was fortunate to spend time with a number of physicians and researchers as they were going through and seeing some of the cutting edge treatments. It was nice hearing from their perspective but also being there to provide the patient perspective on how meaningful and impactful that is to a patient.
A lot of the treatments available improve quality of life by reducing the spleen size and symptom burden, but it’ll be fantastic when we get to the point of disease modification and change the landscape.
Through some of those interactions, I met one of the doctors that chairs a research consortium of some of the major cancer institutes. I have his personal cell phone number and he said, “If you ever need anything, call me.” I’ve put myself out there by getting involved with different organizations. It’s through those things that I get access to people who are in the know about something rare. It provides a level of comfort as you go through it.
One of the things that we were talking about recently was how to get that education into the hands of physicians, patients, and the broader community so that it’s more readily available. It was interesting because as we were talking in a group, one of the physicians said, “I’ve seen hundreds of patients with various MPNs and I’ve hit on some of the things that you, the patients, have brought up in these conversations, but it’s making me rethink my interactions and my dealings with them.” This is an MPN specialist who’s starting to think if he might have missed an opportunity or could have helped a patient in these avenues. It was fantastic. We’re at a point where it’s a conversation of what can we do better for everybody through the community.
Reach out to an MPN specialist. I would advocate for an MPN specialist over another hematologist because you need somebody who understands, studies, and specializes in MPNs.
Words of Advice
Don’t accept any answer that you’re not comfortable with. If you have questions, make sure you’re bringing them up.
Reach out to broader resources. There are a number of organizations that put on different programs. The Leukemia & Lymphoma Society puts on blood cancer meetings where they have specialists who you can interact with. People are afraid to talk to doctors sometimes. They’re normal people. They welcome the interaction. In some of the appointments, they seem very routine and very quick maybe, but if you’re not comfortable with where it is, call a timeout.
Get a second opinion. If you’re not happy with what you’re going through or with what you’re being told, there are tremendous resources available through a number of organizations. Reach out to an MPN specialist. I would advocate for an MPN specialist over another hematologist because you need somebody who understands, studies, and specializes in MPNs. You will get better traction and better information if you can get to one of the major centers that can support that.
I’m very grateful for the connections that I’ve made. It’s not just physicians and researchers but other patients too. The network keeps growing.
Feeling Grateful
I’m eternally grateful for everything that has happened. Even the bad stuff helped drive me to find something better. They say everything happens for a reason. I can’t say how grateful I am for all of the people who have been involved. There are people who are totally unaffected by MPNs personally who have dedicated their work and their time to helping others who are going through this. Pharmaceutical companies get beat up over things, but they are a very integral part in this. They help with the medications.
I’m very grateful for the connections that I’ve made. It’s not just physicians and researchers but other patients too. The network keeps growing. I’m fortunate to live in an area where I’m in fairly close proximity to a number of places with specialists that I can access if necessary.
We’ve had a group chat and there’s a group of people who will share normal, daily life things. Then one day, one of the individuals was going through treatment and said, “I could use some words of encouragement.” When you get tied into it, there are so many wonderful people who will help you through the journey. It’s that community support.
I know the impact that it’s had on my family being on ruxolitinib. It’s completely different. My son was talking about watching a movie one evening with us and he made a spot-on impression of me sleeping on the couch. We were able to laugh about it because it was so true and it’s not that way anymore. I hit my lowest compared to where I am now. Even when it’s bad, I realized that others have it much, much worse. I have myelofibrosis but, other than that, I’m healthy and can enjoy things.
Special thanks again to Sobi for its support of our independent patient education content. The Patient Story retains full editorial control.
Graft-versus-host disease is a potentially life-threatening condition affecting an estimated 50% of blood cancer patients who receive stem cell transplants from a donor. Transplant experts explain GVHD risks, how to watch for symptoms, the current treatments available, and new clinical trials aimed at prevention and treatment.
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Advances in GVHD Treatments and Clinical Trials
Hosted by The Patient Story
Graft-versus-host disease is a potentially life-threatening condition affecting an estimated 50% of blood cancer patients who receive stem cell transplants from a donor.
Patient advocate and GVHD Alliance co-founder Meredith Cowden shares her experiences with GVHD. Experts from UChicago Medicine, Roswell Park Comprehensive Cancer Center, and The Leukemia & Lymphoma Society who are on the front lines of GVHD research and treatment discuss the role clinical trials play in advancing the treatment landscape and what it could mean for you. Discover how to take steps to learn more about clinical trials from a clinical trial nurse navigator.
Stephanie Chuang: I’m a blood cancer survivor myself and started The Patient Story out of my own experience. I felt so alone. I wanted to know what it meant after diagnosis and how we could get through it. As we know, a diagnosis is just the beginning of figuring things out. Our goal at The Patient Story is to help patients and care partners navigate life after a cancer diagnosis, primarily through in-depth conversations with patients, care partners, and top cancer specialists.
We are so proud to partner with The Leukemia & Lymphoma Society, the largest nonprofit dedicated to creating a world without blood cancers. For decades, they have invested almost $2 billion in groundbreaking research and pioneering so many approaches. On top of that, they also support patients and families with programs like the Clinical Trial Support Center, which provides free one-on-one support with nurse navigators.
This program is not meant to be a substitute for medical advice, although we hope that you walk away feeling like you have more to ask your own medical team.
Satyajit Kosuri, MD
Stephanie: Dr. Satyajit Kosuri is a hematologist-oncologist with the University of Chicago Medicine. He is an expert in stem cell transplantation and leads the Graft-Versus-Host-Disease Clinic and the research in trying to improve patient access to transplants. Dr. Kosuri, what drew you to this field of medicine and specifically GVHD?
Dr. Satyajit Kosuri: When I started my oncology fellowship, I was going to be a genitourinary oncologist and I was very much set. When I did my transplant rotation, what drew me was that it spanned all fields of medicine, so you had to continue to have a pretty good breadth of knowledge. The immunology was very, very intriguing. We’re dealing with very complex diseases as well as the transplant itself, which is basically an immune system transplant.
When I tell patients, family members, fellows, and trainees about the field of transplant, I tell them, number one, I’m an immunologist, number two, I become an infectious disease doctor, and then, number three, oncology comes in as part of the triad. That’s what drew me to the field and what I find very interesting. Graft-versus-host disease is part of the entire picture that we’re trying to improve upon within the context of transplant.
Shernan Holtan, MD
Stephanie: Dr. Shernan Holtan is a hematologist-oncologist with Roswell Park Comprehensive Cancer Center in Buffalo, New York. She is the chief of the Blood and Marrow Transplantation and has led so many clinical trials in GVHD. Her research has led to the discovery of the amphiregulin (AREG) biomarker for monitoring graft-versus-host-disease. Dr. Holtan, what drew you to medicine and specifically focus on graft-versus-host disease?
Dr. Shernan Holtan: My story is a lot like Dr. Kosuri’s. In medical school, I was most interested in rheumatology, infectious disease, cancer medicine, critical care medicine, dermatology, and plastic surgery. I thought, How am I ever going to pick between these different specialties? I loved cancer reconstruction and the connection with patients going through cancer and giving them hope after a devastating diagnosis.
On a whim, I took a rotation on the BMT service, in part because it sounded cool. The other part of it is you didn’t have to work weekends and as a very tired fourth year med student, I was excited about that. I was stunned. It was every great aspect of medicine rolled in one specialty, so I was sold and never looked back.
Meredith Cowden, Patient Advocate
Stephanie: Meredith Cowden is a chronic GVHD patient advocate and co-founder of the GVHD Alliance. Why did you decide to dedicate your life to advocating for so many other people with GVHD?
Meredith Cowden: I had acute myelogenous leukemia (AML) at 19. Chemotherapy wouldn’t completely work, so I needed a bone marrow transplant. Shortly after, I developed acute graft-versus-host disease and then I developed chronic graft-versus-host disease, which I’ve had since April 2002.
Graft-versus-host disease is rare and we’re spread out all over the place, so it’s isolating and hard to find resources, information, and even the appropriate treatment team.
I originally wasn’t into the patient advocacy world. I didn’t want to deal with it anymore, but I didn’t want anyone else to have to deal with it. I got angry and frustrated, and frustration is one of the greatest motivators for me. When I would talk to other patients, there was a sense of relief and comfort they felt in talking with somebody who could understand their experience. From that point, I thought that this is where I need to be.
Ashley Giacobbi: I am a nurse navigator with The Leukemia & Lymphoma Society’s Clinical Trial Support Center. We provide individualized clinical trial searches and clinical trial resources to patients with blood cancers or patients who have had blood cancer in the past but may be managing long-term effects of their disease or treatment.
We provide one-on-one connection with patients, caregivers, and their healthcare providers. We take the time to learn about a patient’s diagnosis, past treatment, and other medical conditions that could play a role in their eligibility for clinical trials. Most importantly, we take the time to learn about patient and caregiver preferences and any unique obstacles that may hinder or support their participation in a clinical trial, so that we can target the support that we’re able to offer and give personalized resources.
When immune systems grow suspicious, they’re programmed to do one thing and that is to attack. This new immune system can attack the recipient from the inside.
Dr. Satyajit Kosuri
Understanding Graft-Versus-Host Disease (GVHD)
Stephanie: Dr. Kosuri, what is GVHD?
Dr. Kosuri: When we’re doing a stem cell transplant or bone marrow transplant, we’re doing an immune system transplant. When we’re healthy, the immune system protects us, whether it’s getting rid of bad cells or protecting us from various infections. It considers the body that it’s growing up in as its neighborhood, so it has an inherent desire to protect its neighborhood and recognizes the body that it’s in as being part of itself. When there are things that are not supposed to be there, it recognizes them and gets rid of them.
We’re taking the stem cells from a person with a healthy immune system and putting them into the transplant recipient, so this immune system is growing inside of a new neighborhood. For the most part — and this is where matching comes into play — it recognizes its new neighborhood as its own and leaves it alone. It takes up the mantle of, “I’m going to protect this body and eradicate any leukemia cells,” and that’s the graft-versus-leukemia effect.
But sometimes, there are parts of the new neighborhood that are not what it’s used to, so it starts to grow a little bit suspicious. When immune systems grow suspicious, they’re programmed to do one thing and that is to attack. This new immune system can attack the recipient from the inside, which can lead to some inflammatory physical damage to the patient or the recipient of the stem cell transplant.
Types of GVHD
Stephanie: Dr. Holtan, what are the main types of GVHD? How do they differ and what are some of the common symptoms?
Dr. Holtan: We mainly think of graft-versus-host disease in two phase although there can be some overlap between the two.
Acute graft-versus-host disease happens within weeks to the first few months post-transplant and that has a particular pattern. Most of the time, it’s a red skin rash, but sometimes it can also lead to nausea, vomiting, diarrhea, and liver abnormalities that we might see on blood tests. There’s a very clear time during which this develops and a pretty clear clinical presentation, so it’s pretty easy to determine what it is.
Chronic graft-versus-host disease typically happens later in the months to years after transplant. It can be more subtle and difficult to diagnose. As Dr. Kosuri was saying, this is primarily an inflammatory reaction at the beginning, which ultimately will gradually lead to scar tissue.
Think of a wound that is having some difficulty healing. There’s a lot of inflammation and the body tries to stop that inflammation by putting a scar on top of it. This can happen in almost any organ in the body. Usually, the skin is involved, but it can also cause dry eyes, dry mouth, mouth sores, difficulty breathing, difficulty swallowing, changes with the muscle tissue fascia, and making people feel stiff and have muscle cramps. Any organ can be involved with chronic graft-versus-host disease.
Even though we think about chronic manifestations as a later problem after transplant, we can see some of those changes even within the first few weeks.
Dr. Shernan Holtan
Stephanie: Dr. Holtan, when does it technically turn from acute to chronic? Is there an official time where now we know it’s chronic? Is there a general time frame?
Dr. Holtan: There isn’t an official rule. When Dr. Kosuri and I were in training, we were taught that acute graft-versus-host disease happens before Day 100 and chronic GVHD happens after Day 100, but that’s not really true. The biologic processes can happen at any time post-transplant. Acute GVHD usually happens in the first few weeks to months, but we have even seen acute manifestations of GVHD happen much later.
Even though we think about chronic manifestations as a later problem after transplant, we can see some of those changes even within the first few weeks. The lines are blurred now, so we describe graft-versus-host disease based on its symptoms and appearance rather than time frame post-transplant.
It took a while before my doctors said I had GVHD because they were thinking it was something else. Over the years, I’ve had a variety of different manifestations of chronic GVHD.
Meredith Cowden
Meredith’s GVHD Story
Stephanie: Meredith, what was it for you in terms of those first symptoms? At what point did you realize that this was not going away?
Meredith: In the beginning, I noticed that I had a couple of different things going on at the same time. My stomach started to bother me a lot and I got very nauseous. It was hard to find food that I could tolerate and that was appetizing. I had some gastrointestinal issues going on. I also developed a rash. I’m naturally a pasty pink person, but my skin got red and burned, so it was hard to wear clothing.
When I received treatment, the issues started to get resolved, but then it started to transition. The GI issues didn’t necessarily go away but they changed and my skin got a little bit different.
I had musculoskeletal involvement. I developed polymyositis, so there was a lot of pain. I was very weak and couldn’t move around a lot. I lost muscle mass. It took a while before my doctors said I had GVHD because they were thinking it was something else. Over the years, I’ve had a variety of different manifestations of chronic GVHD.
Dr. Kosuri: Chronic graft-versus-host disease can affect multiple sites in a way that may be difficult to initially pick up. I’ve gotten feedback from patients that what they’ve found helpful is when I describe chronic GVHD prior to the transplant.
I ask them to imagine taking all the autoimmune conditions and rolling them into one and putting them inside a human body. Those are ways that chronic GVHD can manifest, whether it’s dry eyes, a scleroderma type presentation, or pulmonary fibrosis. It’s a great mimicker.
Stephanie: It sounds like it might be hard to identify quickly if people aren’t speaking up too and share the different things that you’re experiencing and communicating openly with your doctor.
There are many different types of complications, but infection comes to the forefront.
Dr. Satyajit Kosuri
Severe Complications in GVHD
Stephanie: I don’t know if there’s difficulty in noticing what the severe complications are, but, Dr. Kosuri, are there any that you’d like to highlight?
Dr. Kosuri: There are complications of the entity itself and then there are complications that will arise from the treatment or the way we try to treat the disease. GVHD in and of itself is an immune dysregulation. The immune system that’s supposed to behave in a certain way is misbehaving or it might be turned on and can’t really control itself. What happens in this state?
There are many different types of complications, but infection comes to the forefront. We prioritize monitoring patients who have graft-versus-host disease not only from the GVHD itself but also from the medications that we use to try to quell the inflammation and calm things down. Both can lead down the pathway of bringing down the level of protection that the human body has as it’s starting or trying to recover from the stem cell transplant.
One of the things that we emphasize for patients is if they’re feeling unwell in any way, shape, or form, they have to let their transplant providers know very quickly. That way, whatever suspicion we may have, we can diagnose and take care of it very quickly. If it’s a small infection, we can treat it and it doesn’t become a big infection.
Be very proactive and very compliant with the medications. Patients take 20 different medications after a transplant and sometimes it’s hard to take all of them, especially when the pills are big. We hear that as one of the main complaints. We make sure that patients are on antiviral medications, antifungal medications, and a medication to protect them from PJP (pneumocystis jiroveci) pneumonia. These help protect and almost substitute in a way because the immune system is not online early on and when you have graft-versus-host disease, it’s not behaving the way that it’s supposed to.
Dr. Holtan: We certainly know that graft-versus-host disease can affect different organs and tissues, and that the treatment can have just as many toxicities as GVHD itself. Some of the most challenging issues we run into are malnutrition, straight-up difficulty eating, all the way to impaired organ function.
What Dr. Kosuri mentioned is key about notifying for changes in symptoms with chronic graft-versus-host disease. You want to intervene before there’s permanent damage. The longer the inflammation and scar tissue goes, the more difficult it is or it might even become impossible to reverse. Early intervention is necessary to try to avoid permanent damage.
If there’s anything that seems even a little bit wacky, ask. There’s no harm in asking. It’s one of the best ways to take care of yourself.
Meredith Cowden
Stephanie: From your own patient experience, did you know that you could bring these up to your doctor? Do you feel that patients you talk to know that they can do that? What do we need to do to make sure that this is happening?
Meredith: I was diagnosed at 19. I was young and there were things I learned over the years. This might sound naive and silly, but there were things that I thought were completely normal but were actually symptoms of GVHD.
Over time, I’ve developed strong relationships with each member of my care team, so I’m very comfortable saying, “This feels weird. I don’t know about this. Can you look at that? Check me out please.” To have that kind of conversation, you have to build that relationship so that everyone is comfortable and can have a discussion with one another even when they have differing opinions. You can get more out of that conversation than if a typical patient-doctor exchange. Oftentimes, things get missed that way.
For patients, treat your doctors like people. Be friends with them. You’re going to be with them for a long time. They want to help you. If there’s anything that seems even a little bit wacky, ask. There’s no harm in asking. It’s one of the best ways to take care of yourself. For the providers, it’s a good idea to ask patients to do a quick scan of their body to get the whole picture because it’s easy to forget stuff. Is there anything that’s going on that we haven’t touched on that you noticed?
The backbone of therapy for both acute and chronic GVHD is corticosteroids.
Dr. Satyajit Kosuri
Current GVHD Treatments
Stephanie: Dr. Kosuri, what are the current standard treatments for GVHD?
Dr. Kosuri: The keyword is current because this is something that’s changing and we hope will continue to change as we go through the years.
The backbone of therapy for both acute and chronic GVHD is corticosteroids. Many patients and their family members will have heard of the medication called prednisone or various types of the steroid.
The degree of the GVHD matters. If you have a mild, acute graft-versus-host disease, this could be potentially managed with topical corticosteroid. As it becomes more severe or involves more organ systems or more of the skin, we start graduating from topical steroids to systemic steroids.
Depending on where we are in the transplant process, our patients will already have been on another immunosuppressive agent, like tacrolimus, sirolimus, or cyclosporine. The goal is to treat with steroids plus or minus this other agent and then taper them off once we have a response.
With steroids, over a period of time, you can accumulate some of those side effects that we don’t like to see in patients, like insomnia, jitteriness, and fluid retention. Those are for people who are in the category of steroid-responsive.
Another category of patients are those who are steroid-refractory, which is where the graft-versus-host disease may be a little bit more sticky and not respond to steroids, or steroid-dependent, where patients are unable to get off steroids. In those cases, we go further down on immune suppression choices. There are other medications available. One that’s FDA-approved and works for both is ruxolitinib. There are also other various options. That becomes more of a longer term treatment.
There isn’t a blood test that can diagnose graft-versus-host disease right now, but we can use biomarkers to help us understand the severity of the immunologic reaction and how much damage has been done.
Dr. Shernan Holtan
Challenges of Existing Options for Managing GVHD
Stephanie: Dr. Holtan, what are some of the key limitations or challenges with the existing options for managing GVHD?
Dr. Holtan: The greatest challenge is understanding how much therapy to give for graft-versus-host disease. We base our treatment upon the severity of symptoms, but that isn’t adequate. There are still some patients that we are over-treating and some patients we are under-treating.
This is where the role of biomarkers can come in. There isn’t a blood test that can diagnose graft-versus-host disease right now, but we can use biomarkers to help us understand the severity of the immunologic reaction and how much damage has been done internally that we can’t detect clinically. This is a huge challenge because even though we examine patients fully and they reveal all their symptoms, we still can’t know how bad things are, so biomarkers can support us in helping to guide that therapy.
This is particularly under investigation right now using biomarkers such as ST2 (suppressor of tumorigenesis 2), REG3α (regenerating islet-derived 3-alpha) known as the MAGIC (Mount Sinai Acute GVHD International Consortium) biomarkers, and then the one that we developed at the University of Minnesota, amphiregulin or AREG. Both of these biomarkers can be used to understand how severe the graft-versus-host disease is.
I have patients who have had severe infections of the GI tract, like C. difficile colitis or viral gastroenteritis such as adenovirus gastroenteritis. An allogeneic transplant recipient might have these infections and we’ll treat the infections, but they’ll have persistent severe diarrhea so you won’t know if you’re still dealing with the infectious process and the healing that has to occur or if graft-versus-host disease developed as a result of the immune system trying to target the infections. Even a biopsy can’t always tell you this, but we can use biomarkers, especially amphiregulin, to help sort this out.
When we’re treating patients with these symptoms, it’s almost like it’s graft-versus-host disease until proven otherwise.
Dr. Satyajit Kosuri
I had a gentleman who had severe adenovirus gastroenteritis and was having 15 to 20 bowel movements a day. We used an amphiregulin test to know if this could be graft-versus-host disease. The result was normal. It was not elevated. I continued to check every week because his gastroenteritis went on for a long time, even though we treated it.
Clinically, he had weeks of diarrhea, but we followed that test every week and the number was always low, so we never gave him prednisone. If I didn’t have this reassurance, someone might say it’s GVHD. It took some time, but he made a full recovery. This is how we can use these biomarkers to help support our clinical decision-making. We need more trials along these lines because the real world is messy.
Dr. Kosuri: I can’t emphasize how important what Dr. Halton is mentioning because oftentimes in transplant medicine, we’re operating in the gray and we have to make guesses. Sometimes when we’re treating patients with these symptoms, it’s almost like it’s graft-versus-host disease until proven otherwise. When you have that type of thought process, it can be difficult and we can actually hurt the patient with the GVHD management in and of itself.
The example that Dr. Holtan mentioned, most transplant physicians would say, “This has to be GVHD and we have to give them prednisone,” and that could lead to other infections or it can worsen the infection the patient already has. We get into these situations that are difficult to manage and if we have something like these biomarkers, it can make our lives as well as the patient’s life much easier and with less toxicity than what we would say is the normal kind of approach.
We had no human data to support how we manage steroid-refractory GVHD. Out of decades worth of work, there were no studies.
Dr. Shernan Holtan
Stephanie: A lot of this is addressing the symptoms that come with GVHD. This may be a rookie question, but I’m trying to understand. Is there research going into how to address the drivers of what’s happening with GVHD?
Dr. Holtan: We know what causes graft-versus-host disease. The donor T cells are attacking tissues and organs. However, we can’t always tell when that attack is over. The whole field of steroid-refractory graft-versus-host disease has developed out of an assumption that the T cell-mediated attack is still happening, so all trials for steroid-refractory GVHD involve intensification of immunosuppression without actual knowledge that there are T cells still causing damage.
This was something that bothered me. These are things that drive you crazy about the field and want to change it. I realized that we had no human data to support how we manage steroid-refractory GVHD. Out of decades worth of work, there were no studies that justified that this is the right path.
I performed a study where we had rectal biopsies of patients with grades 3 to 4 gastrointestinal GVHD. They were steroid-refractory and received other therapy. I wanted to look at the biopsies for a sign that it was the donor immune system still doing the damage to prove what we’re doing is right and I found absolutely no evidence to support our practices. There was no increase in T cell infiltration. There was no immune signature at all that suggested that it was out of control T cell-mediated damage in the steroid-refractory patients. All we saw were signs of tissue damage.
I’m hoping that the field will evolve. Instead of intensifying immunosuppression, give something more immunomodulatory, support immune tolerance, and give something to help heal the damaged organ. Change the paradigm. That was a huge frustration that I had as a fellow and I hope more people read that paper now.
Clinical Trials for GVHD
Stephanie: We’ve talked about the current landscape of GVHD and treatments, and some gaps of need. Before we go into them, what are clinical trials?
Ashley: Clinical trials are carefully controlled research studies that may be conducted by scientists, doctors, or researchers to either test new treatments or test treatments that have been used in the past in a potentially different way. Trials can also compare new treatments to existing treatments or to various combinations of treatments to find out which treatment might work best or which would be better tolerated, all with the goal of improving care and treatment for patients.
BMT CTN 1703 Clinical Trial
Stephanie: Dr. Holtan, can we talk about one of the trials that you helped lead? What’s the potential and the excitement about that?
Dr. Holtan: An ounce of prevention is worth a pound of cure. The theme in these studies is prevention of graft-versus-host disease. Our field is in the midst of an important era. We have very effective prevention for acute and chronic graft-versus-host disease with multiple modalities that we have not had in the past.
The BMT CTN 1703 study was repurposing a chemotherapy agent called cyclophosphamide to prevent acute and chronic graft-versus-host disease by giving it after transplant in the setting of reduced-intensity transplants, so patients who are typically older. The median age of the trial was 66, going through transplant, and would receive this chemotherapy after the transplant. That initially sounds crazy to do. Why would you give chemo after the transplant?
We’re learning how this works, but it helps to deplete allo-reactive T cells. The good cells that we want to persist are completely immune to cyclophosphamide, so regulatory T cells, which are T cell peace mediators, and stem cells themselves are resistant to this chemotherapy. It eliminates the cells we don’t want and preserves the cells we do.
This modality was compared against the standard, which was a calcineurin inhibitor (CNI) plus methotrexate (MTX), and that’s been the standard since 1986. Our field hasn’t undergone a major change where we saw that the new treatment arm was superior. We haven’t had this kind of change since the mid-80s.
We did a similar study in Minnesota looking at post-transplant cyclophosphamide in the myeloablative setting. We saw remarkably low rates of acute and chronic GVHD using this platform. The rates of grade 3 to 4 acute GVHD were 5%. The rates of chronic GVHD requiring immunosuppression were also about 5%. It’s not a randomized nor a phase 3 study, so we haven’t done that comparison. I have a lot of conflicts of interest, so I don’t want to do that study because the results of phase 2 are so good. I wonder what Dr. Kosuri thinks about that.
Dr. Kosuri: Dr. Holtan’s work with 1703 is one of the more important studies that we’ve had recently in the field of stem cell transplant. When we look at our field and the studies that we conduct, having a randomized study in such a large manner is very, very rare, so this was a big deal. It’s not just the findings, but the way that the study was conducted.
The study went through other randomized trials and the two best options went into 1703. As Dr. Holtan mentioned, the results are very, very important and being adapted in a widespread manner amongst many of the transplant centers not only in the United States but even abroad, so it’s a very, very impactful piece of work.
The important thing, as she highlighted, is that these are for older patients who have had multiple lines of therapy and may be coming into transplant in a more frail physiologic manner than someone who is in their 20s, 30s, or 40s. The reduced-intensity aspect is very, very important.
I agree that the post-transplant side has had such an impact on the incidence of acute and chronic GVHD. The other thing that I’ve noticed is the nature of the graft-versus-host disease that could develop. Even if someone were to receive post-transplant cyclophosphamide as a GVHD prevention strategy or what we call T cell-depleting methods, there are other ones also.
When we’re giving higher-intensity conditioning, the amount of initial damage and inflammation that occurs is higher and the risk of developing both acute and eventually chronic GVHD can also be higher.
Dr. Satyajit Kosuri
When we compare it to the standard of care, if they were to develop graft-versus-host disease, there is the potential that it may be more responsive to current treatment modalities. You can treat it and it can potentially go away versus you trying to treat it and patients may become more steroid-refractory or steroid-dependent. Incidence is important and the incidence is much lower. My opinion is that the nature of the GVHD that may happen is also different.
As far as myeloablative conditioning, if we think it works in one setting with a group of patients who may be a little bit more sensitive to the toxicities of transplant, as a transplant physician, we want to try to apply it to the younger, fitter patient population who are receiving myeloablative transplants or the higher-intensity transplant.
The important point there also is when we’re giving higher-intensity conditioning, the amount of initial damage and inflammation that occurs is higher and the risk of developing both acute and eventually chronic GVHD can also be higher.
If we can take this modality, use it in the myeloablative setting, and decrease the incidence of both acute and chronic GVHD, that’s something I think that we’re all very supportive of. As transplant centers are changing their standard approaches, we ourselves at the University of Chicago are figuring out a way to standardize our myeloablative transplants using PTCy (post-transplantation cyclophosphamide), even though we don’t have a randomized, large randomized study.
VIC-1911 Clinical Trial
Stephanie: Speaking of higher-intensity transplant groups, that’s also for VIC-1911, right, Dr. Holtan? What’s exciting about that and who’s going to benefit from that potentially?
Dr. Holtan: This is a new clinical trial looking to improve on the post-transplant cyclophosphamide platform. Now that we’ve nearly eliminated severe acute and chronic graft-versus-host disease, our unmet need is addressing relapse.
We’re looking to see if we could do something different within the GVHD prophylaxis platform that not only keeps GVHD rates low but also directly reduces the risk of relapse. We took away one of the drugs in the platform called mycophenolate mofetil (MMF). We don’t think that MMF probably does very much to be honest. The heavy lifting is done by cyclophosphamide in combination with whatever we partner it with, tacrolimus or sirolimus.
We took MMF out and put in a drug called VIC-1911, an Aurora kinase A inhibitor (AURKA). That drug is known in preclinical testing to keep GVHD rates low, but it also has direct anti-leukemia effects. It helped to kill leukemia cells in the test tube and in mice. Mice who received this combination had better survival overall due to less graft-versus-host disease and less relapse.
We’re testing a platform to see: does it protect people from graft-versus-host disease and can it also protect from relapse? We have two primary endpoints in this study: GVHD and relapse. If we can move the needle with relapse, we will have evolved the platform even further.
This trial is ongoing right now only for the myeloablative or high-intensity conditioning regimen, but we hope to complete the study, learn the results, and, if successful, expand it to other platforms. It’s currently in phase 1. We have just found the dose that we want to test going forward.
Stephanie: That’s great context. Some trials are further along. People are always wondering, “Oh, that sounds so promising! But when are we actually going to see that in the real-world setting?” It’s great to know that the research is happening, but we’ve got a ways to go with that one.
Dr. Kosuri, you talked about PTCy and this trial is about lowering the dose. Can you talk more about that and who will benefit?
Dr. Kosuri: In Dr. Holtan’s 1703 study, we were looking at patients who have fully matched donors or what we call well-matched donors. Well-matched donors could also mean having a single-antigen mismatch. This is coming off post-transplant cyclophosphamide.
For patients who have haploidentical donors or half-matched donors, we’ve been able to successfully use that platform with very comparable and good rates of graft-versus-host disease reduction. The idea is if you can use it in a half-matched or half-mismatch, you can also use it in well-matched patients. We call that 7/8.
There are two studies. OPTIMIZE is coming after another study called ACCESS, which is looking at the same dose of post-transplant cyclophosphamide that we used in haploidentical transplants and reducing the dose a little bit.
Post-transplant cyclophosphamide is given on days 3 and 4 after a transplant at 50 mg each day. Data in the haploidentical transplant setting suggests that if we’re able to reduce the dose a little bit, a couple of things can happen along the lines of toxicity. One of the things that interests us is how quickly someone may engraft after a transplant, meaning how quickly their white blood cells come back and how quickly their hemoglobin and platelets recover.
If we reduce the dose a little bit, are we able to maintain graft-versus-host disease prevention, efficacy, or advantage? Maybe we’re able to improve a little bit with regard to the time it takes for the graft to come in. It’s a phase 2 study looking at patients who are 18 and older, who have a 7/8 donor, and both reduced-intensity as well as the myeloablative condition transplants.
We can find a list of clinical trials that will be open for consideration for a particular patient based on prior treatments and any conditions they may have.
Ashley Giacobbi
Enrolling in GVHD Clinical Trials
Finding a Clinical Trial
Stephanie: Finding clinical trials and enrolling in them is very difficult. We know ClinicalTrials.gov is available but may not be the most user-friendly. Can you walk us through the steps of how a patient could find a clinical trial that’s right for them?
Ashley: ClinicalTrials.gov is an amazing resource. It’s a database of all active and ongoing clinical trials, but it can be very challenging to use. This database contains all clinical trials for all conditions. It’s not exclusive to cancer clinical trials. Although cancer clinical trials make up a large portion of the clinical trials conducted in the United States, there are so many other clinical trials that are ongoing that it can be challenging to find one that’s right for you.
As a representative of the LLS and the Clinical Trial Support Center, we always encourage people to reach out. We hone in and find clinical trials that are most appropriate for the individual in whatever situation they are in. As opposed to having to filter through ClinicalTrials.gov, we can find a list of clinical trials that will be open for consideration for a particular patient based on prior treatments and any conditions they may have.
Types of Clinical Trials
Stephanie: We also understand that there are different kinds of trials available, like prevention, treatment, quality of life, and observational. Can you take us through what they mean in the context of GVHD?
Ashley: There are a lot of ongoing clinical trials for GVHD as this is an area of need. There’s a lot of ongoing research and that falls into different buckets.
Prevention clinical trials may look at altering the regimen prior to transplant or the medications taken after the transplant in an effort to prevent the development of acute or chronic GVHD.
Another type is treatment trials and these may include specific medications or investigational therapies that would manage acute or chronic GVHD if it’s already present.
Quality of life clinical trials are so important. There are a lot of clinical trials investigating symptoms that people with GVHD may experience. There may be behavioral interventions being investigated, such as exercise or even the use of an app to provide support. Some clinical trials offer social support or dietary recommendations in an effort to reduce symptom burden and really improve quality of life.
Finally, there are observational or natural history trials. These would be less involved as patients wouldn’t have to participate as much. These trials collect information either from the patient’s medical record or prior testing that’s been done to learn more about GVHD, who might develop GVHD, or how they might respond to specific treatments. These are important in the information gathering phase, but they might not require as much involvement from the patient perspective.
Eligibility criteria help determine the group of patients who will potentially receive the most benefit from the therapy being investigated.
Ashley Giacobbi
Qualifying for a Clinical Trial
Stephanie: You may find a trial that seems great, but there are eligibility criteria and screening processes that you may have to go through. What does that typically look like for patients?
Ashley: History, previous treatment received, and other factors play a role in the eligibility criteria, but those help determine the group of patients who will potentially receive the most benefit from the therapy being investigated. These criteria are also there to help reduce any unnecessary risk by preventing those who have underlying conditions that could be made worse by the treatment from participating in that clinical trial.
Those criteria may include things like the type of GVHD, acute versus chronic, which body systems are being affected, as well as any prior treatment received for the management of GVHD. Very often, steroids are used and some of these clinical trials will require that people have already attempted the use of steroids. Those eligibility criteria help us to find appropriate clinical trials for the individual.
Stephanie: You have touched on what you at the Clinical Trial Support Center in terms of helping people with a personalized trial list, going off of ClinicalTrials.gov and making sure it’s more tailored to them. Is there anything else you’d like to share about what they could expect?
Ashley: Patients can be referred to the Clinical Trial Support Center either by a healthcare provider or they can get in touch directly themselves. Very often, we connect with caregivers of patients.
Initially, we take the time to learn about the patient, what’s important to them, and their history. Those details are so important when looking for clinical trials and that’s usually via phone call.
Beyond that, we take the time to go through and review clinical trials. We’re very fortunate to have a unique database that looks at clinical trials in ClinicalTrials.gov but also stores information that we receive from investigators and sponsors of clinical trials so that we’re able to provide the most up-to-date information to patients when they’re considering clinical trial options.
Once we’ve generated a list, we’re able to send that to the patient, caregiver, or healthcare provider and share the clinical trials that we’ve found for that particular person. They can then take back that list to review with their healthcare team and see if any of those trials is a potential option for them to explore.
A lot of emerging data suggests that preservation of muscle mass actually helps reduce the risk of relapse, so this is not just cosmetic. It is about quality of life, but it’s also about the efficacy of the therapy itself.
Dr. Shernan Holtan
Nutrition & Exercise When You Have GVHD
Stephanie: Dr. Holtan, what specific nutritional and exercise interventions are being investigated to support muscle health during and after transplant?
Dr. Holtan: This is a substantial topic. I always tell my patients that if I could give a pill that could keep their muscles strong, I’d be the richest woman in the world. Having the ability to maintain muscle mass throughout chemotherapy of any kind is important. We need to do more in this area not just for transplant but for all cancer therapy.
There are multiple studies going on around the world that are looking at different types of nutritional supplements to maintain muscle mass and help promote intestinal healing. There’s some interesting research going on out of Italy using a nutritional supplement that has a growth factor that can help the gut heal itself.
There might be different nutritional approaches based on infection profiles. For example, we want to avoid a certain type of bacteria growing in the intestinal tract and avoid something in the diet that might help prevent that from growing. Those types of studies are important and we need to be able to expand them so that more patients can participate because, in reality, we don’t know what the best diet really is. We want people to get calories and protein in.
The same thing goes for exercise. We need to do more to facilitate exercise, especially resistance training. A lot of emerging data suggests that preservation of muscle mass actually helps reduce the risk of relapse, so this is not just cosmetic. It is about quality of life, but it’s also about the efficacy of the therapy itself. There’s a lot of work we need to keep doing in this space, so stay tuned. Obviously, this is the most important thing that we can work on besides improving the toxicities of the treatment itself. Supportive care is so important. We have a lot more work to do.
It’s on us to educate both referring providers as well as patients to understand that things have improved over time both from an access standpoint as well as supportive care standpoint.
Dr. Satyajit Kosuri
Areas Requiring More Research & Gaps in Transplants & GVHD
Stephanie: Dr. Holtan, you did mention that only a fraction of potential transplant candidates even get referred. What is contributing to this under-utilization? How can we address those barriers?
Dr. Holtan: We have an educational gap. The transplant field is vastly different in 2024 than it was even in 2021 and certainly way different than it was in the ‘80s or ‘90s, so we have to do a better job of communicating. What have been the advancements in care? How have we improved on the availability of donors? We no longer need a perfect match. How have we reduced graft-versus-host disease and improved other toxicities so that more patients are able to be reached?
There’s a lack of referral and also fear from the patient’s side as well. We have a lot of education to do to share that it is different today, much safer, and hopefully we can be able to take care of a lot more patients in the future.
Dr. Kosuri: Many of the old thoughts that we have about transplant are that you have to be a certain age or how scary it is and things of that nature. It’s on us to educate both referring providers as well as patients to understand that things have improved over time both from an access standpoint as well as supportive care standpoint.
The supportive care has changed over the last decade significantly and that’s why we’re able to take patients who previously the field would not consider, even if they were in good shape.
There can be a patient who is 50-some-odd years old but has been beaten up because of the disease or the treatment, so transplant would be very difficult for them, whereas we can have a 70-year-old who is running a half marathon. It’s not just numerical age; it’s the physiology of what the patient’s body is at the time that we’re considering transplant.
I totally echo what Dr. Holtan’s saying. It’s about education and casting our net very wide with regard to patients and patient advocacy groups as well as physicians or the referring providers.
We’re seeing so much change because of our understanding of the biology of the diseases that we’re dealing with coming into transplant, the technical aspects of the transplant, and GVHD prevention.
Dr. Satyajit Kosuri
GVHD Treatments Final Takeaways
Ashley: There are resources and support available. It’s never too early or too late to explore clinical trials when you’re talking about GVHD and clinical trial options during the transplant process.
Dr. Kosuri: Over the last decade, I have had more hope as a clinician in the field of transplant. Even though it’s trying to move, the field has been set in its ways for a very long period of time. But within the last 5 to 7 years, we’re seeing so much change because of our understanding of the biology of the diseases that we’re dealing with coming into transplant, the technical aspects of the transplant, and GVHD prevention, like the 1703 study.
There are many trials looking at the initial treatment of graft-versus-host disease and how to get patients off of steroids quicker. With chronic graft-versus-host disease that is far off, more severe, and more fibrotic, there are ways to manage that.
I want to emphasize Dr. Holton’s work regarding biomarkers. For a long period of time, our approach when it comes to GVHD was if we try something and it fails, we try another agent and provide more immune suppression. We’re hoping to minimize that approach where you throw something at a wall and see what sticks. It may be different for each patient. Do we need GVHD treatment in patients who have certain symptoms? If it is graft-versus-host disease, how do we know when to come off therapy or how to add therapy? That’s where the biomarker becomes very, very important.
I can’t emphasize enough how nutrition, exercise, and sleep are key to help recovery and resilience. I want people to know that they have more control than they think.
Dr. Shernan Holtan
Dr. Holtan: I want patients and their families to know that they have a lot of control in these processes. I believe very much in the principle of self-efficacy. Yes, this is a medical treatment that we are delivering, but there’s a lot a person can do for themselves and that their family can do together to help make the process easier.
I can’t emphasize enough how nutrition, exercise, and sleep are key to help recovery and resilience. I want people to know that they have more control than they think and look for ways that they can help build up their strength and resilience, lean on their network, and use these tools and resources to help build up the spirit and body to be able to withstand the trials and tribulations that certainly lie ahead. The medical advancements are real, but people also have a lot of control and they should know that.
Meredith: Hope is incredibly important. Recognition that you do have control is imperative. Be selfish and put yourself first. Don’t try to take care of all the people around you to the detriment of yourself. If you don’t want to do something or can’t meet with somebody, don’t do it.
Continue to find meaningful and fulfilling activities so that the illness doesn’t become your identity. You have an illness, but you’re not defined by that illness.
The LLS, being a partner of ours on this program, is such a great resource. The CTSC provides amazing one-on-one support in terms of understanding clinical trials, finding, enrolling, and even staying on them.
We hope that this program was empowering and that you’re able to take away not just from this program but from the many stories that we have.
Gwendolyn Jackson initially experienced heavy menstrual cycles, back pain, and bloating, which her doctor suspected to be fibroids. Despite regular tests, including an HPV test and ultrasound, her symptoms persisted. Later, clear fluid leakage led to an ER visit where an MRI and biopsy confirmed cervical cancer.
She underwent a hysterectomy, followed by chemotherapy and radiation, but further tests revealed the cancer had spread, drastically changing her prognosis. Severe side effects from treatment, including weakness, nausea, multiple strokes, and heart attacks due to dehydration, required intensive therapy. Despite initial hesitation, she joined a clinical trial at MD Anderson, which has helped manage her condition more effectively than traditional chemotherapy.
Throughout her journey, Gwendolyn faced misconceptions about clinical trials and the stigma of cervical cancer within the African-American community. Financial challenges resulted in losing her job, insurance, and assets. She found crucial support through Cervivor, an online community for women with cervical cancer.
Gwendolyn’s experience highlights the importance of self-advocacy in healthcare, the life-saving potential of clinical trials, and the need for greater awareness and support for cancer patients.
Name: Gwendolyn J.
Diagnosis:
Cervical Cancer
Staging:
Stage 4
Initial Symptoms:
Heavy menstrual cycles
Severe back pain
Stomach bloating
Treatments:
Chemotherapy
Radiation
Tisotumab vedotin (innovaTV 301 clinical trial)
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider to make treatment decisions.
I started having heavy cycles, severe back pain, and bloating in the stomach.
I went to the doctor regularly. When I went for my well-woman exam, I told my doctor. He said, “I think you have fibroids. It’s very common in the African-American community.” That’s what it sounded like to me. “We’ll run some more tests.”
My symptoms persisted, so I went to my mother because I’m that girl who thinks mom can fix everything. I told her, “I’m having very heavy cycles. I don’t know what’s going on. The doctor said he was going to run some tests. They haven’t called me back yet.” She said, “You’re going through pre-menopause. I went through the same thing at the same age. It’s just pre-menopause.”
My cycle wasn’t getting any better. I finally went back to my doctor and he ran some tests. He did the HPV test and it came back negative. I was still having symptoms, so he said, “I’m going to do an ultrasound.” He did and said, “I see fibroids, so we might have to do a hysterectomy.”
In October 2020, while I was at work, I started leaking clear fluid from my vagina. I knew I wasn’t pregnant, but it felt like my water bag had burst. I said, “Okay, this is not good.”
When I saw cervical cancer written on that paper, I lost it. He wrote it down before they even found out I had it.
Going to the ER
I wish I could remember the name of the doctor who saved my life. I don’t know what would’ve happened if it wasn’t for him and that MRI.
When I went to the emergency room, a younger doctor who looked like he had just become a doctor said, “I want to run some more tests on you. I don’t feel comfortable with everything you told me. What can we lose? Let’s do an MRI.”
After the MRI, he came back and said, “I see fibroids, but I see something under the fibroid, so I’m going to send you to a gynecologist specialist, so they can run more tests because I’m not sure,” but he put “cervical cancer” on my paperwork.
I went home and did the worst thing I could do. I went online and searched “cervical cancer.” My father passed away from cancer, so when I saw cervical cancer written on that paper, I lost it. He wrote it down before they even found out I had it.
Diagnosis
Seeing a Specialist
I went to the specialist who said, “We have to run a biopsy. Calm down. Don’t worry. You’re pretty healthy. I see all the tests they’ve done. I don’t think you have cervical cancer. It might just be fibroids.”
Getting the Official Diagnosis
I was diagnosed during the COVID pandemic, so I had to go by myself. On the way, I talked to my mother and my sisters. Everybody said it was just fibroids. My sister said, “We have fibroids. We had to have a hysterectomy too.” They were reassuring me, so that’s what I thought.
I went in thinking I had fibroids and left finding out I had cancer. You will never forget the day. I was diagnosed on November 17, 2020.
I started treatment right after I recovered from the hysterectomy. I thought it was just a preventative measure to make sure I was okay.
Reaction to the Diagnosis
When you first hear, “You have cancer,” it doesn’t register. For some reason, I thought I was exempt because I was helping people with cancer. I started my nonprofit in memory of my father who died from lung cancer. I thought, I eat right. I run five miles every morning. I don’t smoke. I don’t drink. What did I miss?
Cervical cancer has this stigma that people who get it are either prostitutes, have a high sexual drive, or don’t go for their well-woman exam. That’s not me. On the way home, I thought it was something I did wrong.
I wanted to find out for sure first. The doctor put it on the chart and then gave me paperwork for the referral. I was left alone not knowing if this really was true. That two-week wait was difficult mentally.
Treatment
Hysterectomy
They said, “We’re going to go in and remove the whole tumor. After, you’ll do radiation and that’s it. Your life will be back to the way it was,” so that’s what I thought.
I had a full hysterectomy on December 17, 2020. The tumor was 9 centimeters. Before I went in, they were telling me, “You’ll be fine. After we remove the tumor, radiation will take care of everything else.”
After 6 to 8 weeks, I went for radiation. My doctor did some blood work and he was concerned with the results. He said, “The blood work didn’t change. Something isn’t right. I’m going to do an MRI and a PET scan. We have to see what’s going on.”
After I had the hysterectomy, they said, “We’re going to do radiation and you’ll take a chemo pill. That’s just protocol.” I started treatment right after I recovered from the hysterectomy. I thought it was just a preventative measure to make sure I was okay. They were thinking they got everything not knowing that it was spreading.
The chemo was so hard on me. Some days, you can’t get out of bed. Some days, you don’t have an appetite.
Cancer Spread
They found out that my cancer had spread to my hip bone, my legs, and my spine. Imagine going from everything is going to be okay to find out you have 16 months to live.
I said, “God, I don’t want to die. I just had grandchildren. I just turned 49. I haven’t hit 50 yet. I’ve been waiting to be 50 all my life. Please give me more time.”
When they realized it spread, my team had to come back together and treat me differently. They were going to try a bone marrow transplant, but they couldn’t do it because of how mine spread. My insurance would no longer approve it.
Knowing that was all they could do, I got scared. I have anxiety and depression, and I take medication for them now. I’ve never had depression before, but because of all of this, I take medication for it.
Chemotherapy & Radiation
I didn’t want a port. I asked, “Can we figure out something? Is there a way that I can take pills?” I took chemo pills and did radiation.
Side Effects of Chemotherapy & Radiation
The chemo was so hard on me. Some days, you can’t get out of bed. Some days, you don’t have an appetite. You don’t want to eat. You look at food and get nauseous. People don’t understand that. It’s not that we don’t want to. I’m trying. I’m showing up every day and doing the best I can. I used to tell my dad, “Come on, you can eat. Come on, you can get out of bed.” Now, I understand.
The radiation that targeted my cervical cancer was terrible. It burned the lining of my stomach and I kept getting infections.
I used to help my dad button and zip his clothes. I have the same issues now. I can’t button or zip. These are everyday things that we take for granted. I also felt numbness in my fingers and my feet.
I couldn’t keep anything in my stomach. I was vomiting and had diarrhea. They were giving me medication for everything, but nothing was working.
I feel so weak and cold all the time. I always have a heater with me, but I was so, so weak that I didn’t think I was going to make it. My daughter and the guy I was dating at the time were very helpful. They would bathe me and help me get up.
Because I lost so much weight and wasn’t strong, even my doctor was saying, “You’re getting weaker and weaker.” He kept prescribing me medication for nausea. They finally found a prescription that worked for me and that I love.
Radiation burned my face. It was burning and itching at the same time. My face swelled up and blistered. My doctor told me about a cream I could use, which cleared up my face.
The radiation that targeted my cervical cancer was terrible. It burned the lining of my stomach and I kept getting infections. I never want to do that again ever.
Strokes & Heart Attacks
When I went to the hospital, the ER doctor said, “She has high blood pressure.” I said, “No, I don’t have high blood pressure.” When he checked, my blood pressure was very low. When they ran tests, he said, “You’re having a stroke and a heart attack, and it’s because you are severely dehydrated. You need fluids in the body to make all the organs work.” I didn’t even know you could have a stroke or a heart attack from being severely dehydrated.
I had to stop treatment temporarily because I was in inpatient therapy for 14 days.
Recovering from the Strokes & Heart Attacks
I couldn’t walk, so I was in a wheelchair. I had to stop treatment temporarily because I was in inpatient therapy for 14 days and then I went to the Centre for Neuro Skills in Webster, Texas. I always speak so highly of them because they gave me my life back.
When I came in, I felt so helpless. I wouldn’t use the restroom, even though I was there from 9 to 2 o’clock. I didn’t want anyone to take me. I ended up getting a UTI and people there had to tell me, “We’re here to help. We want to make you better. You have to allow us to help you. You’re still the same person.”
I had three mild strokes. They didn’t understand the last one I had. They said, “Usually when you have a transient ischemic attack, you bounce right back.” I didn’t, so he said the last one wasn’t a TIA. It was a regular stroke because I had all the symptoms. I had to go from a wheelchair to a walker to a cane.
Because of the strokes, I can’t remember exactly what chemo I was on.
Joining a Clinical Trial
I met a doctor at one of Cervivor’s retreats. She was different if that makes sense. I knew that she cared about people. She said, “When you get back to Houston, let’s stay in touch,” because she worked at MD Anderson. I said, “My treatments are not at MD Anderson.” She said, “Let’s just stay in touch.”
My doctor never brought up clinical trials. I was doing some research. I kept hearing other patients talk about clinical trials when I went to the doctor. I decided I was going to ask my doctor, but I want to have information before I go in. I wanted to educate myself.
My doctor said, ‘This is great, but these clinical trials are at MD Anderson. If you can get in, go there. I’ll send your medical records over.’
I reached out to the doctor at MD Anderson and asked about clinical trials. She gave me all the information, told me which ones she recommended, and sent an email right away. It was after hours and she was volunteering her hours to help me. She’s still a big supporter of mine. She still checks on me and asks how I’m doing.
I took the information to my doctor and my doctor said, “This is great, but these clinical trials are at MD Anderson. If you can get in, go there. I’ll send your medical records over.”
My dad enrolled in clinical trials at the end and I said, “Y’all not helping him. This is not helping him.” My dad was such a great guy. He said, “This is how they’ll find out if it works for someone else. If it doesn’t work for me, they know it doesn’t work. If I can help someone, that’s what I want to do. I want to help someone.”
I didn’t understand at that time because I wasn’t a patient. But when you become a patient, you feel that way. If it doesn’t work for me, we know we have to try something else. If it works for me, that means this could be it. If I have to go through all of this to make sure it can save me and someone else, it’s so worth it.
When I went to MD Anderson, they had to do all the scans themselves. Their team comes in and speaks with you, and they have a team for everything. Even though I had cervical cancer, they also had a bone cancer specialist.
They redid all the tests I already had to make sure what they had in the file matched. Once they did everything over and made sure I was good to go, they started talking about treatment.
The clinical trial I’m on is called innovaTV 301. It’s a phase 3 study of tisotumab vedotin.
I like tisotumab vedotin better than traditional chemotherapy. It’s not so hard on my body.
Side Effects of Tisotumab Vedotin
They gave me medication for nausea and vitamin B12. So far, so good. The steroids are putting weight on me. I was a little nauseous at first, but the pill helped with that.
I lost my hair. I went bald when I first started and then it started growing back.
With bone cancer, being cold is a no-no for me. It’s very painful, so I wear a lot of warm-ups or layers to try and stay warm. Even in the summer, when I feel cold, I’ll be in warm-ups. I tell people all the time to be nice to people in warm-ups because you never know why they’re wearing them even when it’s warm out.
I noticed my appetite was not the same. I’ll crave something because of the steroids, but when I get it in front of me, I might take one or two bites and then I don’t want it anymore.
I like tisotumab vedotin better than traditional chemotherapy. It’s not so hard on my body. Do we know if it’s working? I don’t know if they think it’ll work. They’re buying me more time, so if that’s what it can do, I’m okay with that.
In the African-American community, clinical trials are frowned upon…In our mind, we still think we are being experimented on.
Misconceptions
In the African-American community, clinical trials are frowned upon. I think it goes back to when they were using African Americans for experiments and being the guinea pigs. In our mind, we still think we are being experimented on. If you tell anybody you’re doing clinical trials, they think you’re being a guinea pig.
I didn’t have the support. Everybody supports you when you’re going through chemo, but when it comes to clinical trials, they think you’re letting them experiment on you. They don’t care. I have to keep it to myself. I’ll tell people who are battling cancer that I’m in clinical trials, but other people, I don’t.
When it comes to the medical team, sometimes we feel like we’re not being heard. At first, I felt like my doctor wasn’t hearing me when I said it wasn’t fibroids and that something was going on, but they kept brushing me off.
I thought it was just Black women who go through that. Being in the teal and white community and the Cervivor community, I found out that it’s women as a whole. They are not listening to us.
Insurance Coverage
People think that if you want to be a patient at MD Anderson, you can just show up. It doesn’t work like that. When I first found out I had cancer, I wanted to go to MD Anderson because they’re number one. My insurance wasn’t in their network so they couldn’t take me.
While I was going through all of this, I still had insurance because I was still employed. They took excellent care of me during that time, but they could only take me so far. I was getting temporary disability, but my doctor put “permanently disabled” on my paperwork, so I had to resign from my job. They knew I wasn’t coming back, so they said, “You’re going to have to figure out your insurance yourself.”
Even with insurance, I was paying $2,000 to $3,000 for treatment. I lost everything. I lost my cars and my townhouse. The clinical trial was free for me, so that was good. They just had to make sure everything lined up.
I needed people who understood what I was going through, the stigma that comes with it, and that we have a voice. We didn’t do anything wrong.
Finding Support Online
I felt like nobody understood what I was feeling or going through. My mother kept saying, “It’s going to be okay,” but I told her, “What if it’s not? What if I die? What if this is my story?” But, of course, she didn’t want to hear that. “No, you’re going to be okay.”
My sisters were supportive, but nobody knew what I was going through. The only person that I felt I could talk to was deceased. My father would be the only one that would know what I was going through.
I went online and found Cervivor. I needed them more than they probably knew. I needed people who understood what I was going through, the stigma that comes with it, and that we have a voice. We didn’t do anything wrong.
I went to a retreat because I needed to be around these women. I needed them to love on me and I needed to love on them. They gave me hope. They said, “You can do this. You can fight this. Don’t give up. We support you.” They have a group chat where they talk about whatever they’re going through. If somebody doesn’t respond, they all get nervous.
Words of Advice
Cancer taught me to slow down because I was always on the go. I never slowed down to notice anything. Now I would stop and notice things. “Did you know mom has roses in front of her house?” And then I would stop and smell them.
Everything matters to me now because I don’t know how long I have. When I had my stroke, I couldn’t walk and we take that for granted. Even going to the restroom, I needed someone to help me and I appreciate that so much now.
Clinical trials can save us. I’m doing pretty well. It’s working for me. I’m still alive because of the clinical trial. My brother, who has cancer, is on a clinical trial and doing well too.
A doctor told me, “When you go into the doctor’s office, they are working for you. You are not working for them.” When you have that in mind as you’re going in, it’s different.
If you feel like something is not right, speak up. If there’s a treatment that you don’t want to do, say it. We get so nervous when we go in that we freeze up. Use your voice.
Cancer taught me to slow down because I was always on the go… Everything matters to me now.
In addition to Gwendolyn’s narrative, The Patient Story offers a diverse collection of cervical cancer stories. These empowering stories provide real-life experiences, valuable insights, and perspectives on symptoms, diagnosis, and treatment options for cancer.
Symptoms: Intermittent spotting during or after sex, unpredictable menstrual cycle, abdominal pain particularly under the rib cage Treatments: Chemotherapy (cisplatin & paclitaxel), immunotherapy (Keytruda), surgery (total abdominal hysterectomy with bilateral salpingo-oophorectomy & omentectomy) ...
Shyreece’s story began with an unexpected onset of symptoms. After experiencing sudden shortness of breath, she was soon diagnosed with advanced-stage cancer following a series of hospital visits and tests. Visit her first in-depth patient story here.
She underwent various treatments, including chemotherapy and clinical trials, experiencing both successes and setbacks. While some treatments provided relief, others led to significant side effects and the progression of her cancer.
Her cancer journey is marked not only by the challenges of the disease and its treatments but also by her resilience and determination. She stresses the importance of self-advocacy, informed decision-making, and community support. She also became an advocate for understanding biomarker testing and exploring every possible avenue for treatment, including participation in clinical trials for new therapies.
Despite the challenges, Shyreece remained steadfast in her faith and determination to live fully. She shares her story through writing and mentoring, offering hope and encouragement. As she continues her fight, she approaches each day with unwavering resolve and a commitment to living without fear.
In addition to Shyreece’s narrative, The Patient Story offers a diverse collection of non-small cell lung cancer stories. These empowering stories provide real-life experiences, valuable insights, and perspectives on symptoms, diagnosis, and treatment options for cancer.
Thank you to Pfizer 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.
Such heaviness and shortness of breath came over me out of nowhere. I thought, What is this? From that moment, I knew something was wrong
Introduction
It’s been 10 years for me. Before the cancer diagnosis, my answer was, “I’m Shyreece. I’m a teacher and I love kids. I’m so glad to have overcome so many obstacles to teach and do wonderful things.”
When cancer hit me, I thought, Who am I? Where do I go from here? What do I take from this battle that I’m in and can’t seem to get out of? On any given day, I could be floored on my back and the next moment, I’ll be coaxing myself to get up and go to the bathroom.
Pre-diagnosis
Initial Symptoms
My students and I were getting prepared for spring assessments. After they came in from lunch, I said, “Let’s get ourselves ready and do a little brain break dance,” and then everything got heavy. The kids were moving, wiggling their arms, having a good time, and, for whatever reason, I couldn’t do it with them anymore.
I said, “Kids, you guys are going to have to sit down.” I had to hurry and sit down. Such heaviness and shortness of breath came over me out of nowhere. I thought, What is this? From that moment, I knew something was wrong, but I kept pushing past it. That’s what superheroes do, that’s what super teachers do. We push through it. We keep going.
That weekend, my boss came in and said, “We’re moving you to a more administrative role.” I said, “This is great. Now I’m excited again.” But when Monday came, I couldn’t carry my book bags into the office. It was such a short distance from the parking lot to the front door of the school, but I couldn’t do it. When I finally got in and started trying to catch my breath, somebody heard me wheezing and said, “Shyreece, you need to go to the ER.”
I didn’t know what was going on, but that started a two-week journey to being diagnosed.
Going to the ER
My husband picked me up from work at about 7:00 pm and took me to the ER. The doctor said, “You’re not going anywhere. You’re in such a state that we don’t even trust your husband to take you to the hospital. We’re going to take you by ambulance.”
I didn’t know what was going on, but that started a two-week journey to being diagnosed with stage 4 ALK-positive lung cancer. We didn’t even know what ALK meant. I learned that along the 10-year journey.
Diagnosis
Five doctors were standing in my room and they were as confused as I was. The hospitalist said, “We don’t know what’s going on on the surface, but I’m going to send this to the University of Michigan.”
He waited for the results to come back and when he got them, he said, “Oh my goodness.” He came in, held my hand, and told me, “You have cancer,” and then called the local cancer clinic.
Something in my gut said to go to the University of Michigan. When I got there, they said, ‘We have an inhibitor we want you to try. It’s promising.’
Treatments
Carbo-Pem-Bev
They had no idea what to do next, but she said, “Shyreece, I’m going to go ahead and load you up with the best chemotherapy mix that we can possibly give you right now.” I said, “Okay, let’s do it,” so I started with carbo-pem-bev (carboplatin-pemetrexed-bevacizumab) at the local clinic.
I didn’t know what I was asking for. We had to do it overnight. It was a long night, but I took it like a champ. I had the most angelic nurse that night. She was amazing. It was her first time treating me and it was my first time going through such an ordeal.
Crizotinib
Something in my gut said to go to the University of Michigan. When I got there, they said, “We have an inhibitor we want you to try. It’s promising and we want you to start that in April.” That’s when I started crizotinib.
AT13387 Clinical Trial
I joined a clinical trial of AT13387 (HSP90 inhibitor) times two cycles with concurrent crizotinib. I didn’t feel right with that one. I did everything that I was asked to do during the trial, but I withdrew due to significant diarrhea.
In the middle of the night, I would have to drink oral electrolytes quickly enough to stop the spasms. They were out of control. It was a couple of days or so after the cycle. I lived through that and didn’t like it at all. It didn’t give me a good quality of life. After I came off of it, I felt a little bit better, so I was able to enjoy my anniversary around that time.
After withdrawing and feeling a little bit better from the nausea and cramping, according to some scans around the time, there were improvements in some areas. For example, I used to have to do an abdominal CT scan, but I didn’t have to do that anymore, so something got better there, but I didn’t know what. I didn’t have to focus on getting some of the areas scanned.
After the trial, there was some metastasis. The University of Michigan said, “You can’t use crizotinib anymore, so you can stop taking it.”
Alectinib
I waited and had to fight for alectinib. I had to get it approved by insurance so that I could start taking it. The doctor said he was fighting behind the scenes with me to get the insurance to approve it so that I could start taking it. Even though I started panicking, he said, “Shyreece, it’ll be worth the wait.”
Everybody needs to understand what biomarker testing is and how to read certain test results when they come back.
Treatment Decision-Making
When I hear clinical trials, I hear another opportunity to step out in faith. At first, I didn’t want another clinical trial. I would have to be on my deathbed and have 24 hours to live before I do another clinical trial, but that’s not where I’m at right now. I’ve changed. I’m thankful I’ve had 10 years and kept up with enough.
Whatever decision I make, I’m not going to waver on it. I’m solid in my faithfulness. I’m going to make it knowing that this is what I’m choosing today. I hope that this encourages somebody else to live their best life with no fear. I’m not going into any trials with fear. It’s another opportunity to live my life with faith.
Somebody can benefit from me. I need them as much as they need me. I give love to people who need it and the relationship that they have with me, so I’m going to be present and I’m going to live.
Let the medicine do what it’s going to do, but know that it’s not everything. Whatever regimen I’m doing at the moment is what works best. That’s what I keep telling myself.
Biomarker Testing
Something told me that I did not have regular lung cancer. Nothing made sense to me and yet I was this close to dying. Everybody needs to understand what biomarker testing is and how to read certain test results when they come back. When I looked into it, I learned that there were different types of lung cancer. It opened up a whole new window of options.
In my situation, it seemed like biomarker testing was already done but the results weren’t disclosed to me. The test that the hospitalist sent out had some information in there. Stanford didn’t do a repeat biopsy. They trusted all the records from the University of Michigan. When they looked at them, they highlighted: stage 4 ALK, rearranged bronchogenic. That’s when I first heard those terms.
Six years went by before I found out what biomarker testing was. I learned that through LUNGevity, who heard about me through an ALK-positive online cancer group. The doctor at Stanford said, “Shyreece, have you heard of the ALK Positive group? Look them up. I heard that they just had their first summit.”
I started digging. Then-president Gina Hollenbeck and I started conversing. Sad to say, she’s no longer here. She lived eight years with the same cancer that I have. I have a lot of stories about the loss of friends with the same biomarker. That’s how I started talking about biomarker testing and doing a lot of the advocacy work that I’m doing now.
We have to be empowered. For patients who are getting these diagnoses, self-advocacy is a must.
Message to Other Patients & Care Partners
We have to be careful with the words we use regarding remission. The CT scan showed no evidence of disease. Friends and family even thought I was healed because I looked good and didn’t look like I had cancer. I’m so sick of hearing that. I don’t even have the energy for it anymore.
We have to be empowered. For patients who are getting these diagnoses, self-advocacy is a must. If you’ve been shy all your life, then you better grow out of it. I had to grow out of it and quickly.
I moved around all these clinics and doctors, and all of them didn’t want to have a meeting to see what was going on and what was best. I had to piece everything together. Advocate for yourself. You become a self-advocate when the flame of other voices lights you. What are you advocating? Who are you advocating for? What gives you strength and power? Nine times out of ten, it will come from something else that motivates you.
This is the time to just really lock in and go all in. This is war.
Advocating for Yourself
I always say when you’re advocating, get yourself locked arms. I love watching some war movies, like the movie called, “300.” I love it when they get ready to go to battle. Come on, they lock…formation, and then you can see them taking their shields. It’s in front of them. They locked in and they’re ready to go.
When you get ready to advocate, who are you locked in with? Find a group of folks who you can lock in with. This is not for the faint of heart. This is the time to just really lock in and go all in. This is war.
I have made it no secret in my faith. Now, there were some people in the beginning. They knew me as Sister Pompey, Sunday School teacher, and all this. But when I got a diagnosis, they were like,”Where is your faith now?”
I did take a tumble. I did take a hit, but I’m gonna tell you right now, I wouldn’t take [anything else] for my journey now. Look, if I die, I am the Lord’s and if I live, I am the Lord’s, so whether I live or die, I am the Lord’s. I’m going from life to life. I’m going to live my life.
I know this is not Scripture, but Gandhi said learn as if you’ll live forever, so maybe that’s why I keep reading all these reports and stuff. I’m going to learn as if I’ll live forever, but I’m going to live as if I’ll die tomorrow.
I’m living it all. I’m leaving it all out on the field today. Everything that was ever given to me, I’m giving it all, give it all, give it all. I’m not holding nothing. When I go to bed tonight and I’m [worn] out and I’m tired, I don’t have time for depression. I’m too tired.
You’ve got to connect to something bigger than yourself. That’s all I’m saying.Let the medicine do what it’s going to do, but you just know it’s not everything.
I do want to say for you or anybody else who’s watching, please, one of the things that I look for, I love giving back and I love sharing my story and my journey. [Here’s] a link to my book. It’s on Amazon — Fruititude: Growing Spiritual Virtues Through Adversity. I’m always giving back to children and families, so any way that you can support, that would be great and I would really appreciate it.
