Author: Chris Sanchez

Amy’s Melanoma and Cervical Cancer Story

Post author By Chris Sanchez
Post date April 12, 2024
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April 12, 2024

Amy’s Melanoma
and
Cervical Cancer
Story

Interviewed by: Alexis Moberger
Edited by: Chris Sanchez

Amy got through both melanoma and cervical cancer, and is eager to share what she learned from her experience.

You may be familiar with Amy, her husband, and their Australian shepherd Roxy if you’re active on social media; they’re the nature-loving family that takes half the year off to hike and travel in their Airstream, and shares their adventures online. But Amy is also a cancer patient advocate. She has had melanoma not just once, but four times, and has also overcome cervical cancer to boot. She travels constantly not only to explore, but also to spread awareness of skin health and the importance of keeping safe from the sun while enjoying the great outdoors.

Amy’s cancer story starts way back in her childhood. Like many others of her generation, she was ignorant of the dangers of unprotected exposure to sunlight, and would spend hours recklessly soaking up the sun in search of the perfect tan. She was just 8 when she got badly sunburned, after which a strange pattern resembling a birthmark appeared on her right arm and right back. Doctors weren’t overly concerned, shrugging the mark off as just a reaction to being in the sun.

More years of unprotected exposure to sunshine meant that Amy just kept on getting sunburned. She was 17 when her mother noticed that the mark on her arm and back was many times darker than the skin around it, and that plenty of moles were forming in the area. She was taken to a dermatologist–her first-ever visit to one–who performed multiple biopsies and diagnosed atypical dysplastic nevus, moles that look different from other moles and which are benign, but which can be harbingers of melanoma itself.

As Amy grew up, she continued to be at risk for skin cancer. She became a photographer whose work frequently took her outside, during which she preferred to wear less-protective clothing like tank tops. Her first cancer diagnosis came in 2016, when she was 28. The biggest and darkest spot she had yet seen appeared on her upper right chest, and it started to bleed. She ran to her dermatologist for a biopsy. The spot was diagnosed as melanoma stage 1B, on the verge of transitioning to stage 2.

The doctors successfully performed wide excision surgery, and afterwards Amy started to take her skin health seriously. She began to wear sunscreen and protective clothing, and started to have regular checkups. But her past years of unprotected sun exposure would not be overcome so quickly; she would struggle with 3 more bouts of melanoma, the latest one having been successfully treated in May 2023.

Amy is also a cervical cancer survivor, having been diagnosed and having successfully undergone treatment for her cancer in 2022. She has also experienced setbacks at seeking medical treatment; after moving to another state, she saw a doctor who did not agree with her concerns about her skin, and had to seek another healthcare team who would be more supportive.

In the past, Amy underwent genetic testing to determine the basis of her melanomas’ behavior. This testing has revealed two cancer mutation markers that place her at significant risk for ovarian, breast, and pancreatic cancers. These findings are further compounded by the fact that she has the connective tissue disorder Ehlers-Danlos Syndrome, which has been linked with issues and complications with melanoma, as well as a family history that includes breast cancer, melanoma, colon cancer, bone cancer, and cervical cancer. Amy had undergone major surgery in 2006 to correct some complications due to Ehlers-Danlos Syndrome.

Amy’s story is a testament to how important it is to be one’s own advocate; to seek out medical assistance that truly serves one’s health, as well as a support system that has one’s back and helps one realize that one is not alone; to be resilient and determined, even when the going gets really tough; and to take skin health seriously.

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

Name: Amy H.
Diagnosis:
- Melanoma
- Cervical cancer
Staging:
- Melanoma: Stage 1B (2 instances), Stage 1A, Stage 0
- Cervical Cancer: Stage 1
Initial Symptoms:
- Melanoma: Bad sunburn (at age 8) that resulted in a birthmark-like pattern on her right arm and parts of her back
- Cervical cancer: Painful intercourse, pain during Pap smears, cramps
Treatment:
- Melanoma: Excision surgery (wide local excision), Mohs surgery
- Cervical cancer: Partial hysterectomy

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

Table Of Contents

Amy's Melanoma andCervical Cancer Story
Related Cancer Stories

I just want to help anyone that I truly can, and not feel like they’re alone in this journey.

Introduction

I’m Amy Nichole, and everyone on social media knows my husband and I because we travel six months out of the year in our Airstream with our Australian shepherd, Roxy. What better way to really see the world then do that and be able to take our fur baby with us. So with my background in photography, it’s just a really good combo. We love hiking and seeing new places in the US and Canada.

Our travels are also important to me because they help me with my advocacy. I work to spread more awareness on how you can stay outdoors, be active in the sun, but also protect yourself with sunscreen, protective clothing and hats. I truly just want to help others to not be afraid of the sun even after they’ve been diagnosed. With us being out on the road so often and for so long, this is what I do and it has helped me stay safe during our travel days.

Health conditions and complications

To put my cancer history in proper context, here’s a little bit about some health conditions and complications I’ve faced.

Family history of cancer

Sad to say, cancer runs in my family.

My mother has had cervical cancer, my grandfather is currently battling colon cancer, and my great-grandmother had melanoma and breast cancer–the latter almost killed her, but what killed her in the end was melanoma on her foot in her 60s. And my grandmother on my father’s side had bone cancer.

Cancer mutation markers

I also carry not one but two cancer gene mutations.

You’ll see that in 2019, I went to an oncologist for a checkup. Although we didn’t find any melanomas, he urged me to do genetic testing because he felt that with me having a weird sunburned design on my arm and back (more on this later), there’s still something going on.

So we did genetic testing and it revealed my two cancer gene mutations. They both carry very high risk for ovarian, breast, and pancreatic cancer, both of them. Melanoma is very common for people with those levels of risk and those cancers.

Ehlers-Danlos Syndrome

And on top of all that, I also have a connective tissue disease called Ehlers-Danlos syndrome. Not only is this syndrome debilitating in itself, experts have also found links to complications and issues with melanoma.

Because of this syndrome, I have had multiple combinations with the collagen in my skin that keeps the bones and stuff in place. My sternum was concaved inward and that’s called pectus excavatum; it’s so severe that my heart was pushed to the left and down and is deformed because it didn’t have enough space. My lungs could not fully open, especially the one on the right, which means I couldn’t get the full oxygen intake. No thanks to this condition, I’ve had multiple instances of pneumonia growing up; I was always sickly; and I had a hard time breathing. I was misdiagnosed multiple times with asthma and then anxiety.

In 2006, matters with my condition came to a head. Doctors at UCLA said, we need to fix your chest now–otherwise, by age 30, you’ll most probably pass away because everything is so compressed and your heart is under tremendous stress. And I was going into a lot of tach rhythm and stuff, like tach, SVT, AFib And they said that it eventually would lead up to ventricular tachycardia with how much stress the heart was being put under.

So they did a procedure called the Ravitch Procedure. It should have been a two hour surgery, but it actually took nearly 9 hours to finish, because once they opened me up, they realized on the healer index that I was a 13.9. To have the surgery you need to have a 2.9. So I was way above and beyond what they’ve ever done before.

It was like open heart surgery. They cracked the sternum in two places to reconfigure it, to get it straight; broke every single rib twice; and then wired everything shut and put this bar in for six months. But a year and a half later, I started having more heart issues. And when they checked my chest out, they found out that my sternum was concave again, and even worse compared to before I had the surgery.

Not only did they have to put the bar back, but they also did a newer surgery method called the Nuss procedure. This was not without risk, because this procedure is usually done on 12 year olds. I was in my 20s, with my body already done growing, so the procedure was risky, but necessary.

We found a pediatric thoracic surgeon at UCLA to do the surgery. I did have complications. I was in the ICU for three weeks when I should only have been there for two nights. The bar stayed in for four years, not six months. And my cardiologist really pushed that surgeon. Don’t take it out. We saw what happened the last time. He was like, no, this surgery, you have to have that bar out. She can’t keep it in because it technically went from one rib to the other rib. We did end up extracting it.

But in 2018, I had to have the bar put in again–my third and final repair for my pectus excavatum, and the bar went in to stay this time.

We found a surgeon in Las Vegas who would do the surgery. He said, OK, usually this bar would need to come out after four years, but given your health situation it needs to stay in. Technically, your condition is severe enough that we should be putting in two bars. But because two would really limit your mobility, and since you’re going to leave it in, we need to try it with one bar to start and see how it does.

So they put in a titanium bar that lets me do an MRI and have all the scans when I need to. I did have major complications once again, like pneum othorax in both lungs that kept me in the ICU for a whole month and a half. I have this huge scar that starts under my breast. But I did pull through, and my heart and lungs are as good as they can be now.

Pre-Diagnosis

I was not the best when it came to sun protection growing up.

Back then, we all were not very aware that laying out was really going to cause all these issues in the future, because back then everyone was like, oh, you have to look tan or you look sick. And I was super pale with my complexion and my background and all that. So I really went against what I should have done for my skin.

At age eight, I got a really bad sunburn. And my mother had noticed since that sunburn, I got this really weird design on my right arm and on my right back. It looks kind of like a birthmark. And she took me to the doctors.

They’re like, it’s fine. It’s just a reaction to the sun. But my mom’s like, she wasn’t born with it. They retorted, I know, but it’s just a reaction. So they just kind of pushed it aside.

And then in my teens, laying out with oil to try to get that tan, I didn’t do tanning beds, but laid out for hours on end every single day to try to get that tan and had multiple sunburns because of it.

And then when I was about 17, my mom noticed that that design on my arm and my back was getting ten times darker than my actual complexion. And a lot of moles were forming, all around it, and only in the actual design itself. So she’s like, we need to get you to like a dermatologist. It’s a skin doctor–my very first visit to one–and they’re going to know what’s going on.

So they just started watching my skin at 17 and we’re doing biopsies. And I was diagnosed with atypical dysplastic nevus. But I didn’t take it very seriously, even though I was having multiples of them: some mild, some moderate, others severe. And even with having excisions at such a young age, I still didn’t really know much, and certainly didn’t put two and two together.

If you butt heads with or don’t agree with your doctor, don’t get defensive with them or question them personally. Do your research and get a second opinion. But don’t stop thinking that you’re losing your mind or overthinking. Go with your gut.

If you feel something is off, listen to your inner guts and go with it.

Because at the end of the day, you are the one that sees your body daily. You know how you feel.

Diagnosis and Treatment

When I was 28 years old, things took a really serious turn.

I had become a photographer who was always outside for shoots–without hats and in tank tops and clothes like that. I had to start going every 3 to 6 months to my dermatologist in UCLA.

And she gave me the ABCDEs of melanoma, and then I started reading it. I’m like, hmm, maybe I should start really looking at all of these spots all over my body.

Melanoma: Stage 1B (June 2016)

One day I started having this spot right here on my upper right chest itch. I’m like, maybe I have an allergic reaction because my skin is sensitive. But it started to bleed. This one spot was a lot bigger and pretty dark compared to all the other spots.

And so I called my dermatologist, and she looked at it. Well, it’s not super inflamed or anything, she said, but we’ll biopsy it.

Within three days she called me. The biopsy came back as melanoma stage 1B and it was really close to changing to stage 2. And she said, we’re going to have to get you in right away to get a wide excision done.

After the surgery, my doctors at UCLA urged me to see a dermatologist every three months and I agreed to do so. We lived in Las Vegas and I had to find someone to go to frequently. I didn’t really see eye to eye with the first dermatologist I went to, however.

I felt he looked at me like I was young and I didn’t know what I was doing and didn’t know your skin. And there were other issues too. When I got him to biopsy a worrisome spot, he told me it was moderate atypical dysplastic nevus, which I had had in the past. I requested a wide excision, which is what they would have done at UCLA because of my history of melanoma. But the doctor said, it looks fine–and I will see you in a year because I’m fully booked.

I tried to get myself a booking for a checkup 3 months later, but couldn’t. So I waited it out and finally saw him after 8 months–during which not only did the spot he had removed grow back over the scar, another spot across it actually started growing. So, two menacing spots.

I asked him to biopsy both–but he said he only had time to do one. I had him look at the one that grew back, and it was melanoma. He didn’t tell me the Clark level or stage. He just referred me to a Mohs surgeon and said, I’ll see you after a year.

Melanoma: Stage 1B (February 2019)

I got transferred to another facility that was absolutely amazing. Their type of care was above and beyond. They took me in right away.

I underwent a Mohs procedure with their awesome surgeon. It took six hours to keep cutting because it was really deep. It was a Clark level of five. So he said that one was closer to stage two than my first one was. And he was shocked because it was a moderate atypical dysplastic nevus, which he said the odds are so low for it ever changing into melanoma. But yours did, he said, and in eight months.

If it would have been left, it would have been stage two, he said, within a matter of a month or two or sooner, you don’t know, because melanoma is weird.

And while he was in the last round of cutting, I asked him, is there any way you could look at the other spot that’s across from it? Of course.

And within a week that one came back as Stage 1A melanoma.

Melanoma: Stage 1A (March 2019)

The doctor was like, okay, that’s not good. You need to get established with us and leave the other dermatologist because obviously he didn’t have your best interest at heart.

So I moved my whole team to that facility, got a dermatologist through them, and I started seeing them every three months. And that dermatologist said, you need to get in with an oncologist now.

I asked, why? It didn’t go to my lymph nodes. It hasn’t spread. The dermatologist explained, in such a short time period you’ve had no less than three melanomas. There’s something going on with your body; it’s producing them rapidly and we need to get to the bottom of it.

Oncologist, PET scan, and genetic testing

So by September 2019, I saw an oncologist and then got established with him, did my first ever PET scan. Everything was clear. There was no hidden melanoma, nothing, which was a real godsend.

And then he was like, we need to do genetic testing because I really feel with you having this weird design, there’s something going on. This is when I underwent the genetic testing I mentioned earlier.

Cervical cancer (November 2022)

Near the end of 2022, I decided to undergo a partial hysterectomy–to head off any possible issues stemming from my Ehlers-Danlos syndrome and to deal with a persistent HPV infection.

I experienced several symptoms pointing to cervical cancer, such as painful intercourse and discomfort during Pap smears, as well as cramping.

Because of my syndrome, I’m not a candidate to get pregnant, because I’ll just pass my condition on to any child I have. Moreover, if I do get pregnant, I have a 50% chance of not surviving the pregnancy anyway due to complications with my condition, and the hormones might actually make my heart rupture. So, at 23, my husband and I decided I would get my tubes tied.

Because my existing OB-GYN wouldn’t do the procedure, I found a high-risk OB-GYN who would. But another development occurred. Because of my family history of cancer, I’ve been undergoing Pap tests every year. In 2017, I tested positive for HPV. The doctors reassured me that this was normal and that a healthy body would get rid of it naturally within six months. In 2018, my HPV test came back negative, but in 2019 it came back positive. So we switched to 6-month testing and the tests just kept coming back positive. But because the cells were mild and not changing too much, we decided to just watch it.

In 2022, just before my family and I left for our travels, I was tested again and the cells had changed once more. My OB-GYN told me that we would test one more time after we returned from our trip, and if the cells had changed further, I would need to get a hysterectomy.

We got back from the trip, I got the test, and the cells did change again. So I was scheduled for a hysterectomy as the doctor advised, on November 11.

My husband and I decided that if my ovaries looked clean when the OB-GYN went in, we would just leave them and have a partial hysterectomy. Additionally, I didn’t want to go through menopause at age 35. I was happy to hear that my ovaries looked clean and good, so the OB-GYN left them in and we decided I would just undergo regular testing each year.

Unfortunately my stay at that hospital resulted in significant complications.

I stayed there for eight nights and barely ate while I was there; I just had their ice chips and water, and had no appetite. My husband was increasingly suspicious because I usually do have an appetite.

So he brought me home, which was alright since we live less than 10 minutes away from that hospital. But over the next few days, I started running a fever and also began to have diarrhea about every 20 minutes, and then began to have breathing problems and the left side of my face was swollen shut. So my husband brought me back in.

They determined I had a gastrointestinal infection. They administered antibiotics and had me stop eating and drinking for 48 hours, and at first I was feeling much better. But after a couple more days, my symptoms worsened to the point that I was either vomiting or having diarrhea.

By the 7th day, I had to force a couple slices of pizza down because I hadn’t eaten anything except the ice chips and water. An hour after I ate, my belly was super swollen and I started vomiting and couldn’t stop. A CT scan was performed–and we discovered that my infection had spread throughout my entire intestines.

We gave up on that hospital and transferred to another one. There, we discovered that I had contracted a bacterial infection like E. coli from the other hospital’s water and food, and it had spread like wildfire since the antibiotics had covered it up. The new hospital also found out that my potassium was dangerously low, just 2.4, and my liver was in the 500s. I ended up having to stay an extra 10 days at that hospital to recover and didn’t get to go home until mid-December, and also lost 25 to 30 lbs.

I truly just want to help others to not be afraid of the sun even after they’ve been diagnosed.

Melanoma: Stage 0 (May 2023)

Just last year, a fourth melanoma appeared on my upper right back, again within that distinctive birthmark-like design.

As it turned out, we had caught it early; it was at Stage 0. I underwent a local wide excision, which successfully prevented it from progressing to Stage 1.

Life and lifestyle changes

I’ve made some small but powerful life and lifestyle changes, dating from my first brush with melanoma.

I started to shift my whole mindset–began to wear hats, change out my wardrobe in favor of more protective clothing that’s UPF 50, and improve my behavior: always wear sunscreen, and never step outside again without sleeves, even if it’s 120 degrees or something.

Even my husband’s mindset changed; he’s from Greece, where they’re not really big on sun protection either, and he just loves being outdoors and going mountain biking and so on. But after seeing what I underwent, he changed too.

I’ve also made significant changes to my diet as well. My oncologist and team have told me to stay away from sugar because my cancer wants anything it can have, it will want it to produce these mutations to produce the melanoma. So I made the decision to reduce my sugar intake to very low levels. The only sugar that I get is from natural sources, fruits. I also eat lots of veggies.

I also take daily Vitamin D supplements. When your Vitamin D level is low, if you have the mutation I have, you’re actually at higher risk for cancer. I actually am deficient in vitamin D. So my daily supplements are crucial.

I also make sure I walk daily, which is easy because Roxy, our Australian Shepherd, has so much energy you literally have to make sure she goes for her walk.

I just want to help anyone that I truly can, and not feel like they’re alone in this journey.

Words of advice

I just want to help anyone that I truly can, and not feel like they’re alone in this journey.

The four times I’ve had melanoma, I’ve used my experience to educate others, to try to help them not make the same mistakes and just help as many people as I can by sharing my own journey.

And if they’re fighting it right now, I try to help them with just being there for them. We have a really big community on Instagram of others that have melanoma, and we just work together doing drills and stuff to spread awareness and doing Lives, asking people, what are your fears? Just to show them that, hey, you’re not alone, that we all have your back. And if you need someone to talk to, we’re all there for you.

I also have advice to offer regarding doctors. If you butt heads with or don’t agree with your doctor, don’t get defensive with them or question them personally. Do your research and get a second opinion. But don’t stop thinking that you’re losing your mind or overthinking. Go with your gut.

If you feel something is off, listen to your inner guts and go with it. Because at the end of the day, you are the one that sees your body daily. You know how you feel. You know how you should feel. They do know what they’re talking about. The doctors, they don’t want something to go wrong with you, but they don’t see your body daily or know you personally. They know what to do to treat you and stuff. But if you feel that what you are being told is not matching to what you feel should be done, get a second opinion.

You also need to find a doctor that you feel comfortable with, especially an OB-GYN. I don’t feel comfortable with the male OB-GYN, for instance. I feel more comfortable with a woman. You need to feel comfortable with that doctor, because it’s a very intimate type of situation. You need to be on the same page with them and just feel safe with their judgment. And also someone that will not push you to wait three years to five years, even though that’s what the new standard is, especially if you have a history.

Lastly, this is specific to those who are suffering from hair loss. Find a hair company, if you know you’re having that issue, and find a supplement that will help promote the hormones to balance them out naturally than having to take medicines. They have so many side effects and, I feel, actually cause more damage than good. If you can avoid them, I try to avoid them. I use Soothe Vitamins from Keratin Haircare and it’s all natural. They help women and men that have experienced hair loss at all ages, and they’ve been there for me since I had my melanoma return in 2019, and I could not have done half the stuff that I have with my hair without them.

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Viola’s cancer diagnosis came as quite an unwelcome surprise, because she is athletic and active; has practically no family history of cancer, save for a grandfather who got lung cancer from chain-smoking; and aside from a couple of symptoms, initial tests including a CT scan, blood testing and biopsy came up with nothing.

Nevertheless, further testing just a few months after that healthy diagnosis revealed Stage 4 stomach cancer that had started to spread outside of her stomach.

A shaken Viola began to undergo the aggressive chemotherapy regimen known as FLOT, but also started to speak up for herself. Her doctor told her that should FLOT be successful, it would open the door to surgical removal of her stomach. But this was unacceptable to Viola, since doing so would not do anything about the other afflicted parts of her body.

Viola and her mother began to do research, and discovered another treatment called HIPEC that could help. But this was not something she could automatically avail of. The doctor who administered HIPEC would need to check her CT scans to see if she could undergo this treatment. Thankfully, the doctor and his staff later agreed to treat her even without seeing her CT scans.

In a 10-hour operation, the doctor removed her stomach, ovaries, gallbladder, and part of her small intestine and big intestine before administering the chemotherapy drugs that are part of HIPEC. Viola’s response was positive, and she was discharged after a stay in intensive care to heal at home, where she carefully resumed her athletic activities to help herself recover.

Months later, however, Viola was back in surgery because she had to constantly use the toilet, and upon arriving at the hospital she started vomiting and could not stop. She underwent a 6-hour operation to deal with her intestinal issues.

But Viola’s body continued to refuse to absorb nutrients. A few months after the surgery, as advised by another oncologist, and despite the objections of her own oncologist, Viola took a gamble and stopped her chemotherapy treatments. The gamble paid off: her condition normalized. Moreover, a checkup revealed that her cancer was gone, which quarterly checkups continue to verify.

Viola’s story is testament to her strength and positivity, to her refusal to accept the status quo and undergo standard treatment, and to her unwavering belief in herself.

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

Name: Viola K.
Diagnosis:
- Stomach cancer
Staging:
- Stage 4
Initial Symptoms:
- Persistent fatigue
- Weight loss
- Occasional pain
- Persistent weakness
Treatment:
- Chemotherapy – FLOT (fluorouracil, leucovorin, oxaliplatin, docetaxel)
- Surgery with Chemotherapy – HIPEC (hyperthermic intraperitoneal chemotherapy) (surgery, chemotherapy)
- Second operation on intestines

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

Table Of Contents

Viola's Stage 4 Stomach Cancer Story
More Stomach Cancer Stories

Cancer is just an opportunity to prove how strong you are.

Introduction

My name is Viola. I’m Polish, but I’ve been living in Australia for 20 years.

I turn 51 in April this year. I have two kids, 14 and 17.

I like sports, I used to run a lot, I love swimming. I just enjoy being outside, I love nature.

I love talking to people. I just get a lot of energy being around people.

Pre-diagnosis

Before I got diagnosed with cancer, I was thinking that I might die from a different disease, but not from cancer, because there’s practically no cancer story in my family.

Only my grandfather had cancer, many, many years ago–he died from lung cancer, but he got it because he smoked a lot.

This means that my cancer was a big surprise for all of us.

My own story goes back a little. Five years before I got diagnosed, I knew something was wrong with me because I was very tired and I could feel a little pain.

But when I went to the doctor and they checked my blood, did a CT scan, and all that, there was nothing. And because I was so active, too, they really didn’t think that something was going on.

All of a sudden, in February 2020–when the pandemic started–my husband, daughter and son all got sick with influenza. And one day, I went to work and suddenly felt a sharp pain. And ever since then, I started to feel weak, and got weaker and weaker. But I thought it was just influenza, too.

My family was fine after 2 or 3 or 2 weeks. But I was still very, very weak. And I kept going to the doctor for checkups, two or three times. But he still couldn’t find anything wrong with me.

Diagnosis

In April, we did the blood tests and CT scan, and the doctor couldn’t see anything. And he said, okay, let’s have you do a gastroscopy or endoscopy.

But he then said, oh, since there’s a pandemic, I don’t know if you can have these tests. But I put my foot down, and said, I have to give it a go, you know?

I got a referral for a different doctor, and I said, OK, if I’m going to have to pay for these visits, let’s get the best doctor we can get.

So I did go to see that new doctor and filled him in. He noticed that I had lost weight–all of a sudden, I had lost 5 kilos. But I personally didn’t notice, because I’ve always been pretty skinny, and I’ve been running quite a lot, too.

The doctor had me do an endoscopy. I went to see him on a Friday and we did it on Monday. And once again, they couldn’t find anything. But this time, this new doctor said, let’s do another one in a couple days, because I don’t have a good feeling about it. So we did another one after three days.

The doctor didn’t have results yet, but he called me and said–I think it’s cancer. Of course I said, no, it’s not possible, in fact, I already feel much better.

And two days after that is when he called me with the confirmation that it really was cancer. Stomach cancer, stage 4.

And as it turns out, it was hidden in my stomach wall, which is why it didn’t show up easily or right away. And the other thing was the cancer had spread a little bit outside. I think it’s called peritoneal.

Reaction to the Diagnosis

It was from nothing to a big thing. In April 2020, I was a healthy girl; on June 1 of the same year, I was diagnosed with stage 4 stomach cancer.

So this is how sneaky cancer is. Stomach cancer just takes you by surprise. And it’s so ironic because I was always laughing at my husband, saying, hey, I can eat anything, and he would go, oh, I can’t eat this because my stomach hurts.

And moreover, I didn’t have any symptoms like blood in a stool, or anything like that.

So yeah, it was a big, big, big shock to me. I didn’t know what to think. Of course I thought I would die. Just the word cancer freaks you out.

My friends were incredulous. They said, your blood results, they didn’t show anything. The CT scans from April didn’t show anything. The first biopsy didn’t show anything. Is it really cancer?

But it was just hidden in my stomach wall. That’s why I never had constant pain. Because if you have stomach cancer and if you have a lump, wherever you eat, it hurts.

Treatment

Stomach cancer is aggressive cancer, so we had to move right away, and the first treatment I was given was aggressive too.

So the surgeon I was going to said, okay, because you’re young–I was 47 at the time–let’s do the chemo, we’ll put you on FLOT.

FLOT

So they put me on FLOT, and like I said, it was very aggressive chemo. It’s not for everyone.

The doctors put people on FLOT if they have hope that their patients can undergo the surgery and regimen. If not, I would have been put on palliative chemo instead.

The doctor wrote a report and in it he said, if the chemotherapy works, we can consider an operation to remove the stomach. When I saw the word “consider”, I freaked out. I could feel that my life was in his hands. And I’m not the kind of person who’s okay when someone else decides about my life.

What about the rest of the cancer that’s outside the stomach, I asked him? He said, well, this is what I can do. But I put my foot down and said, this is not enough. You can’t just leave the rest of the cancer in my body.

So I talked to my mom, who lives back in Poland, and we started searching for alternatives. And she came across a method called HIPEC.

HIPEC

Now, HIPEC is something they don’t recommend for stomach cancer patients. It’s more for people with colon cancer, or ovarian cancer. But we still wanted to give it a shot.

So I started searching here in Australia and found one doctor who could administer it, but I could feel that she didn’t feel confident about HIPEC for me. So I kept on searching.

I found another doctor who actually started HIPEC in Australia, and who was supposedly the best in the country. He had been doing this for such a long time and was very experienced. I think he was about 70 years old at the time already.

I wanted to make an appointment with him, but it wasn’t that straightforward. I had to send all my CT scan results beforehand, and then his staff would have to see if I was qualified for it. So I was waiting for all my scan results to arrive–and praying and praying that he would accept me.

And all of a sudden, I got a phone call from the doctor’s secretary. She said, you’re clear to make an appointment, even if we haven’t received your CT scan results yet. So it was like a blessing from God.

So when I finally met him, he was like, OK, no problem, we can do it. And I said, really? It’s stage 4. He said, yeah, not a problem, we see how we go.

Out of curiosity, I asked, do you get a lot of stomach cancer patients? And he said, I actually don’t. Most of the time, it’s too late and there’s no chance. But with you, I can see a chance that HIPEC will work for you.

So they put me on what would eventually be 4 rounds of HIPEC chemo. It was tough, and not just the chemo itself. It was doubly tough for me, for my family, because I’m responsible for all the cooking and cleaning at home and all of that. And when I got sick my husband had to take over everything.

Also, being on chemo, not having appetite, and thinking about death was traumatizing. And people around me were in shock, too. Because we didn’t have that family history of cancer. And I was also pretty young when it started.

People didn’t know how to help. They were sending flowers and I said, I don’t need flowers, sorry, I need food. Some people just couldn’t get it. I don’t know, maybe I expected too much from people.

So I tried to eat and be strong for the next step, which was an operation. I remember that they really wanted to operate on me quickly. We can’t wait, they said–this is aggressive cancer. We have to do it quickly.

Surgery

So, in September 2020, they rescheduled all their operations just to fit me in, and then they performed the surgery.

Mine was a long operation, ten hours. They removed my stomach, ovaries, gallbladder, part of the small and large intestines. Honestly, I don’t know if the cancer spread to my gallbladder, but they just removed this just in case.

They told my husband that apparently my stomach was sitting or lying on my intestine. And if the stomach was full of cancer, then it could spread to the intestine. That’s why they removed as much as they could.

Chemotherapy

And after removing all the stuff, they performed the next part of HIPEC.

This is like a hot chemo, 42 degrees. So after they take all the organs out of you, they put in the hot chemotherapy, they close you.

And this is like in the washing machine, it’s just killing the cancer cells that are left after the cancerous parts are removed.

It should have taken just about one hour and a half, but I started bleeding after an hour, and they had to disconnect me. That’s why it took so long, ten hours. And then I went to intensive care.

… the secret of my success is that I was doing the stuff that people don’t want to do.

I’m alive because I was doing stuff that people don’t do.

Post-Procedure

They expected me to be in intensive care for 4 or 5 days.

Because this is very aggressive treatment, and only strong young people can be qualified for it. But, you know, I always had a lot of energy.

When I had the operation and woke up the next morning, I was strangely happy.

My first question was, did you even operate on me? And they said, yes. So I was happy already.

This is like when you go on holiday and then come back home; you still have this energy left over from the holiday.

After I woke up the next day in intensive care, I had all this good energy.

It was in the middle of the night and I was chatting away. The whole world was quiet and I was so active and talking because I was still on this healthy energy.

And when the doctor saw me, he said, oh, I’m pretty happy with the result. You look OK. So maybe we can move you to a normal ward straight away. In fact, they wanted to discharge me under 24 hours because I look pretty OK.

But I said, no way, not yet. I want to stay in intensive care first. I didn’t know if the people in the normal ward would know what to do with me.

Sure, I did have all that good positive energy afterwards. But recovery turned out to be hard. Because everything stopped inside my body. The intestines were not working. It was a big shock for my body. They did remove half of my organs, after all. I remember after the operation, after the HIPEC, they wanted me to go to the toilet by myself. They didn’t want to do anything that was not right with my body.

After 3 days, I got discharged. I went back home. I was healing. But I wanted to take the next round of chemo straight away. However, they said that I needed at least 2 months to recover, because it was after all quite a big shock for my body. Not just because of the operation but also because of all the chemotherapy that was pumped inside me.

I recovered at home, and I tried to be active while doing so–stuff that people don’t ordinarily think of doing while in recovery. I got myself to walk. I even jumped on the trampoline. Anything to keep my body moving. I slept a lot as well, of course.

But the secret of my success is that I was doing the stuff that people don’t want to do. I’m alive because I was doing stuff that people don’t do.

Second Operation

After this operation, I had to undergo a second operation in April 2021, because I had a problem with my intestines.

I was already skinny, on chemotherapy, and I lost a lot of weight. Maybe I’m mentally strong, and my body was strong too.

But I couldn’t keep the food in my body; the toilet became my home. Honestly, I could sleep there. It was just a nightmare.

So my weight was only 38 kilos in April 2021. So, to fix me up, I had to have a second operation. They had to open me up again and see what’s going on.

Of course, it was a scary moment, honestly, because this was the time when I started vomiting a lot at the hospital.

And even my son said, I thought you are not coming back, because when you start vomiting, it means that your intestines are blocked, and if the intestines are blocked, you’re done for.

So I underwent a 6-hour operation to repair my intestines.

Afterwards, the doctor checked–and there was no sign of cancer.

Even at the hospital, I kept on doing the things that were working for me. I was pushing myself. I tried to walk and do different things. I meditated and prayed. I just refused to accept that I can die.

Stopping Chemotherapy and Being Cancer-Free

After the surgery, I stayed on chemo for over a year because my oncologist didn’t think that I was going to survive.

My oncologist, by the way, didn’t want me to do the operation. He said, people with stage 4 shouldn’t be operated on. But I retorted, I don’t need to talk to you–this is my life. Why should I put it in someone else’s hands?

I should also say that my surgeon and oncologist don’t get along. They don’t speak, because my oncologist doesn’t like my surgeon. But I’m really grateful for my surgeon, because he’s a great man with a big heart. He’s helped so many people the same way he helped me. So I continue to pray for his continued health.

In December 2021, I ended up stopping chemotherapy. This was a risky choice I had to make. I was losing weight again and my body wasn’t absorbing nutrients at all.

I was scared because chemo was saving me, it was keeping cancer away from me. But then I went to another oncologist, who backed me up.

The oncologist said, you’re right, Viola, stop the chemo. Get stronger. If something comes back–hopefully nothing will, but just in case it does–your body will be much stronger and will be better equipped to fight it off.

So I took his advice and stopped chemo. And since then, every 3 months I’ve had a CT scan and a check up.

So far, so good. No signs of cancer.

… don’t be scared, really, because people want to scare you.

Saying you have cancer and then you are just–bang, you’re done.

You’re not done.

Words of Advice

Because you live, people look at me and they said, oh, you’re fine, blah, blah, blah. Even my family, they don’t get it.

People said, well, you should go and live your life. But you can’t live your life if you could die.

My death was in front of my face. It’s changed me. It’s changed me a lot.

But honestly, I don’t care what other people think. You know, people, this is my life. This is my decision.

And I think I’m a big winner.

I don’t listen to anyone, honestly. Even to my family. The only person who supports me is my mom. But I’m strong. I’m very mentally strong. And I wish more people who are going through cancer will listen to themselves instead of other people. People who have never gone through this.

I only listen to people who have experienced what I went through. People who have never gone through this honestly don’t have a clue what they’re talking about.

I know, maybe I’m too straightforward, but this is me.

If someone can learn something from me, that will be great. Look, whatever happens next, I’m much stronger. And I have more knowledge.

When I got diagnosed for the first time, it was a big surprise. But now I know that cancer is just another sickness. This is about what you eat. It’s about your mindset. It’s everything. But don’t be scared, really, because people want to scare you. Saying you have cancer and then you are just–bang, you’re done. You’re not done.

Cancer is just an opportunity to prove how strong you are.

Thank you for sharing your story, Viola!

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Laura’s Stage 4 Kidney Cancer Story

Post author By Chris Sanchez
Post date March 13, 2024
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my stage 4 kidney cancer story

March 13, 2024

Laura’s Stage 4 Kidney Cancer Story

Interviewed by: Alexis Moberger
Edited by: Chris Sanchez

Laura survived stage 4 kidney cancer.

Originally from south Louisiana, Laura now lives in Southern California. She splits her time between working full time in marketing in the gaming and hospitality industry, being a kidney cancer patient advocate, enjoying her sports and hobbies, and caring for her family.

Laura had been struggling with her health for at least two years before her symptoms were properly diagnosed as cancer. She suffered from elevated blood pressure and fatigue so significant that she would sometimes have to nap in her car during lunch breaks, and was also found to have a very high red blood cell count. But the doctors she would consult chalked her symptoms up to lack of sleep, stress due to her demanding job, excess weight, and so on.

Later on, Laura’s health took a turn for the worse. She started to experience back pain so bad that she sometimes had a hard time walking, and her legs became so swollen that she was unable to wear pants to a dinner out to celebrate her 29th birthday. She returned to the doctors, who started taking a closer look at her symptoms and ordered more procedures.

Blood work uncovered kidney issues. Her doctor told her to have a CT scan done that week, but she decided to take immediate action. That very night, just 5 days after her 29th birthday, she went to the emergency room. It was a pivotal and timely decision: the doctors discovered that she had stage 4 cancer and a massive 13cm tumor on her right kidney. The doctors also found that this tumor was what was causing her legs to swell, because it was blocking her vena cava–the main artery bringing blood back up to the heart from the lower parts of the body–making immediate treatment even more urgent. Laura was also diagnosed with the rare genetic disorder, hereditary leiomyomatosis and renal cell cancer (HLRCC), or Reed’s Syndrome.

Laura’s ER surgeon, a kidney cancer survivor himself, connected her with the UCLA-based surgeon who had operated on him years ago, and she ended up heading there for surgery. During a 5-hour session, the surgical team removed her right kidney, right adrenal gland, most of her inferior vena cava, and 7 lymph nodes. However, a checkup some weeks later revealed that the cancer was not only still present but had also spread to her lungs, liver, and nearly all the lymph nodes in her chest.

Laura started seeing another doctor in Las Vegas, who recommended that she take part in the S1500 PAPMET randomized clinical trial organized by the global cancer research community, SWOG Cancer Research Network. After some deliberation, she decided to join the trial, where she ended up taking the targeted therapy drug Cabometyx (cabozantinib).

The side effects of cabozantinib were crippling. But just a year after Laura started taking it, she was found to be in complete remission. Out of 147 patients who joined the trial, she was 1 of only 2 who had had a complete response to their treatment.

Laura continues to be healthy to this day; she undergoes scans every six months, and to date her status continues to be “NED” (no visible evidence of disease). But not only is she enjoying her life once again, she is also now a patient advocate, and actually works with the very doctors who concluded the clinical trial she joined.

Laura is sharing her story with us to show that a Stage 4 diagnosis does not have to be a reason to give up hope; to exhort cancer patients to advocate for themselves as a lifelong responsibility; and to urge them to get to know both their bodies and their disease, in order to be able to make the best possible choices for themselves.

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

Name: Laura E.
Diagnosis:
- Genetic condition: hereditary leiomyomatosis and renal cell cancer (HLRCC) (Reed’s Syndrome)
- Type 2 metastatic papillary renal cell carcinoma
Staging:
- Stage 4
Initial Symptoms:
- Profound fatigue
- Hypertension
- High red blood cell count
- Severe back pain
- Badly swollen legs
Treatment:
- Cabometyx (cabozantinib) assigned under S1500 PAPMET clinical trial

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

Table Of Contents

Laura's Stage 4 Kidney Cancer Story
More Kidney Cancer Stories

I’m not the same person I was before I was diagnosed. There’s no way I could be.

I definitely look at life differently now…

I try my best to live as authentically as possible. Because I know time is a gift.

Introduction

I am 36 years old. I live in Southern California, and I’m originally from outside of Baton Rouge, in the south of Louisiana.

I’m a proud graduate of Louisiana State University, where I got a bachelors and masters from National University. I’ve been working in marketing in the gaming and hospitality industry for over a decade now. Just busy with my family when I’m not at work.

I also like to read and do Zumba and watch global reality TV. I’m actually am part of an all women’s Mardi Gras krewe; I ride in a parade in New Orleans every year and it’s one of my favorite things to do. I just rode earlier this year and I’m already ready for next year.

Pre-Diagnosis

I was having symptoms of my kidney cancer probably two years before I was officially diagnosed.

I had horrible fatigue and was actually going to my car in my lunch breaks to sleep. My blood work was really off. I would go get my blood work done and there would be this one level that I was like, why is it off? And actually had a doctor tell me, oh, if something was really wrong, it would be like hundreds off the charts.

My blood pressure was high, too. I talked to my primary care doctor and she said, well, hypertension runs in your family. And I said, I know, but I’m in my 20s. It’s usually people in their 40s and 50s in my family that have hypertension.

Everyone just kept telling me, lose weight, get more sleep, reduce your stress. And at the time I was working in marketing for a casino corporation that has multiple properties across the country. I was the marketing manager over three of their properties on the strip. And so I thought, okay, well, I probably am stressed.

You know, I was working a lot of hours and, and had a lot of responsibilities. My kids were in middle school at the time or late elementary school. And so I just thought that’s kind of how things were. And then it was about six months before my diagnosis.

Diagnosis: Type 2 metastatic papillary renal cell carcinoma

I went to get another biometric screening done, and they almost called an ambulance because my blood pressure was so high.

So I went to my primary care doctor. But she again said, lose weight, reduce your stress. I ran my blood work and my red blood cell count came back really high, which I later found out is an indicator of kidney cancer. But the doctor said, oh, you probably just had an infection or something.

I felt like a hypochondriac at that point. These are all specialists. These are all doctors. They know what they’re doing, who am I to question it? So that was December.

And then one day in May, ten days before my birthday, I woke up and I just had the most horrific back pain I’ve ever had in my life.

I was honestly struggling to walk. It felt like I was a puppet and someone was just pulling the strings, you know?

And so I went to urgent care because my primary care couldn’t get me in. But it was more of the same. They said, yeah, you probably pulled a muscle here. I was given some muscle relaxers. Of course, they didn’t work.

It progressed to the point that a few days later, for my birthday, we went out to dinner and I couldn’t even put pants on. I had to wear a dress because my legs were really swollen.

So my mom was in town at the time and I didn’t want to freak her out, so I waited until she left town a few days later to go to my primary care. And when I went there, the doctors did more blood work and said, something’s wrong with your kidneys. I’m going to send you for a CT scan. Go get it done within the week.

But I was really feeling that it couldn’t wait. Thankfully I didn’t listen. I went to the ER that very night after work.

The ER doctor diagnosed me with a 13 centimeter tumor on my right kidney and told me I needed to have surgery as soon as possible. He told me to go to a specialty hospital, not to just let any surgeon operate on me, which now that I know so much more about my disease than I did at the time, I realized it’s because it was a very complicated surgery they had to do.

And that was five days after my 29th birthday. I know my outcome would have most likely been very dramatically different had I not gone to the ER that night.

I was also diagnosed with a rare genetic disorder, known as hereditary leiomyomatosis and renal cell cancer (HLRCC), or Reed’s Syndrome.

Reaction to the Diagnosis

It took forever for me to get diagnosed, but once I did, everything lined up into place.

I think I just kind of shut down mentally after the ER doctor said, you have cancer. And I really struggled to process it. I almost felt for a minute there like if I said it out loud, it made it real, you know? I’m a very logical person, but it was hard to process.

I remember we got home from the emergency room, early the next morning because I had been there all night. I had to call my boss. It was a work day; I actually had a presentation that I was supposed to be giving that day. And so I’m thinking, oh my gosh, I have to call my boss and tell him I have cancer. And I actually sat in my chair in my living room and was practicing saying, “I have cancer” before I called him. I was trying to: one, make my experience a reality and, two, keep myself from crying while I’m telling him this. It just felt like a bad dream, honestly. It didn’t even feel real.

And there was about a month between my diagnosis and my surgery, and I was in terrible pain the whole month. You know, I just wanted to sleep and just not think about what was happening. So it took me a while, even after my surgery, to really come to terms with what was happening.

And I remember distinctly after my surgery, I was in ICU for, I think, about five days. And then they moved me to a regular room, and it was there that I finally went, I should probably look at my gown and see my doctors. I hadn’t even done that at that point. I think that was the moment that it really hit me, like, oh my God, my life is never going to be the same again. Like I knew that cognitively. But that was my emotional process. This isn’t just “I have surgery and I’m done with it and I move on with my life.” This is forever going to be something that I am now identifying as a cancer patient and cancer survivor.

It’s frustrating whenever I look back, because I know that at the time of my diagnosis, I had to have had cancer for at least a year, probably two plus. And the idea that had I not been diagnosed at stage four, I could have just had surgery and been done with it, I wouldn’t have reached a point where I’m being diagnosed with a terminal phase of this disease. It’s pretty heartbreaking and it’s really frustrating.

I went back and talked to my primary care doctor a few months after I was diagnosed. Obviously, I’d switched doctors at that point. But I talked to to her and the head of the clinic and I said, look, I know that you will probably never see another case like mine again, but, you know, there’s this phrase with rare cancer patients that they tell doctors at medical school to look for horses when you hear hoofprints, not zebras. And I’m a zebra.

Look, you’re going to go on and treat other patients. And you may never see another case like mine again, statistically speaking, but it doesn’t mean that you don’t have to see other cases that aren’t rare on their own. And I think that we are conditioned a lot of times, especially as women, to just accept diagnoses, if you’re telling me nothing’s wrong, nothing’s wrong, and I’m just going to believe that. But we know our bodies.

I really encourage people to trust their instincts when it comes to their health. You know your body best, you know if something’s wrong with you.

And I really wish I would have just kept listening to that little voice that I had in my head. You know, in my heart that said, Laura, something’s wrong.

I’m glad that I finally did, because that’s what encouraged me to go to the ER that night.

Surgery

The ER doctor told me that he’d already contacted a local urologist in Las Vegas, where I was living at the time, and that the urologist was going to help me get to either USC or UCLA in California for surgery. The ER doctor was very adamant that I needed to go to California for surgery.

I’m now realizing how extensive the tumor was. It’s not just that it’s 13cm, which is very large for a kidney tumor, but it was also blocking my vena cava, which is your main artery that brings your blood back up to your heart from your legs and all. Which is why my legs were so swollen. And so that’s a life threatening condition, which I’m glad I didn’t know at the time because I probably would have just completely shut down at that point.

I realize now that’s why the ER doctor was so insistent that he needed to go to California for surgery. And so the next morning we went to the urologist in Vegas, and he said there was one surgeon in town who may be willing to take your case. Didn’t want that. But he said, if you go to California, I’ll get you in at UCLA.

The doctor added, actually, I was you seven years ago, with kidney cancer. And if you go to UCLA, I will send you to the surgeon who operated on me. And sure enough, he did. He actually walked out of the exam room and called the surgeon on his cell phone and said, I’m sending you a patient from Vegas. And so I got into UCLA.

They did a phenomenal job with my surgery. I was incredibly lucky. I had two amazing surgeons and it was a five and half hour surgery, and they removed my right kidney, my right adrenal gland, most of my inferior vena cava, and seven lymph nodes. And we were hopeful that they’d removed all the cancer. And maybe I would need to do immunotherapy afterwards to keep it from coming back. So that was in June.

Cancer metastasized

But when I had my first scans in August, the cancer was spreading like wildfire.

And so at that point, the cancer was in my lungs and my liver and pretty much all the lymph nodes throughout my chest.

And the doctor at UCLA said, I could put you on this one treatment.

Again, I would just go back to if something doesn’t feel right, listen to your body.

I think even as cancer survivors, we tend to dismiss things sometimes, and so even if you’re in your cancer journey or you’re a survivor, you have to.

It’s advocating for yourself as a lifelong responsibility.

Treatment

Treatment Options

The doctor said, I don’t know if it’s going to work for you. I think you probably should look into clinical trials, but if you do that, you’re going to have to come back and forth a lot. And I know that’s going to be kind of a burden for you to do that. So there’s a doctor in Vegas who is a specialist in kidney cancer, and I would recommend you go see her.

And I was really nervous about switching my care back to Vegas because of the experiences I had before, obviously. I actually had debates with my family and friends on whether I was making the right decision to move my care from UCLA? And I said, you know what? I’m going to go ahead and try it.

And I wound up with the most wonderful oncologist, who, again, was a GU, a kidney cancer specialist named Doctor Vogelzang. And at the first appointment, he sat me down and said, look, here’s what you have. He was the first doctor to explain to me what specific type of kidney cancer I had, answered all my questions, said, I have these treatment options lined up for you. There were all clinical trials because at the time there was no standard of care for the type of kidney cancer I had.

And so he said, here’s the one I think is the best option for you. There were three other ones that he had lined up. And then he said, look, I’ll even do chemo if I have to. Chemo isn’t usually used for kidney cancer patients. But I was so young that he just was like, I’ll do whatever I can to try to give you as much time as we can.

So he explained the first trial and he said it’s four different types of treatments. It’s a randomized trial. I can’t promise you which one that you’ll get. We have no control over that. But there is one treatment on this trial that I think would be your best bet. He said, look, think about it. Let me know what you think in your next appointment, what you want to do.

Decision to Join a Clinical Trial

And I decided to join the clinical trial. The clinical trial that I was on was sponsored by a group called SW OG.

Even now people say to me, oh, that was so brave of you to choose a clinical trial. And I recognize now that it was a brave decision to do a clinical trial. And I’m really proud of my decision to do that. But at the time, it just felt like, what choice do I have? I have terrible choices to make. And, if I make the wrong decision, that’s my life in the balance. That’s how it felt.

I also remember having this conversation with a close friend on my next steps. I said, look, the doctor I met with in Vegas is saying he doesn’t think the treatment that UCLA recommended is going to work for me. And let’s be honest, I’m dying anyway.

So maybe this is a Hail Mary. Maybe this will help me to live a few years. My goal at the time was to see my kids graduate high school. But if not, at least I’ll be doing something that will help other patients at some point. And so that’s why I decided to do the trial.

Cabometyx (cabozantinib)

And I remember when they randomized my treatment. My doctor said, oh my gosh, you hit the jackpot. This is the drug I wanted you in. It was a drug called cabozantinib.

And, at the time, I didn’t know what that was. I thought I was going to be doing immunotherapy, which I’m now embarrassed to admit because I know the differences between the drugs now.

And so I’m like, I can’t believe I thought I was doing immunotherapy because I just didn’t know the difference. It was a targeted therapy drug. And I started it and I was just terrified. And of course, my doctor explained the side effects and I’m going like, wait, what’s going to happen to me?

But again, I was like, what choice do I have? I mean, I can’t die now. I knew at that point that I had no more than a year and I would be lucky if I had another year.

And so I actually pulled my kids out of school for my first day of taking my pills. They needed a mental health day anyway, I’m sure, they had been watching me go through this all summer. And so I brought them to this little hotel outside of Vegas. And they have a really nice pool and all and then I’m sitting here thinking gosh, this is probably dumb. What if I take the first pill and I have this terrible reaction and then my kids are, you know, even more scarred, because mom had to go rushing to the E.R., which thankfully didn’t happen.

Side Effects

The side effects of cabozantinib were rough, to say the least.

What’s hard about being a cancer patient who’s doing one of these newer forms of treatments, like targeted therapy or immunotherapy, is you don’t typically have the same outward side effects that people recognize, whether they think of cancer patients.

I didn’t lose my hair, but it actually turned white. That’s one of the typical side effects from this type of treatment. And that was heartbreaking for me because I’m 29, 30 years old. My hair is going white; even my eyebrows went white. And it’s just all those things that you try to tell yourself, okay, the prize is I live longer and it’s true. It worked for me. I don’t regret it for a second. I would do it all over again in a heartbeat. But, you know, it does a number on you. It changes who you are.

I always say, kidney cancer helped me take the best pictures of myself that I ever took, which is terrible. I mean, I lost an unhealthy amount of weight. Honestly, looking back at pictures now is honestly kind of painful because I go, oh my gosh, I looked sicker than I realized I did

And because you don’t look like people expect a cancer patient to look, when I got back to work and all, they’d go, you’re doing great now, right? And like, no, I threw up three times before I left the house and had to drag myself out of bed because I was so fatigued and also, these targeted therapy drugs actually create a lot of GI issues. You get horrible diarrhea.

I recall standing in the grocery store aisle like about six months into my treatment, trying to pick out what adult diapers I was going to wear. I’m 30 and I’m buying adult diapers. And then I go to check out, I’m thinking, oh my gosh, this woman’s going to know, right? And she probably thought I was buying it for a grandparent or a parent or something.

You get all these side effects like it’s almost shameful to talk about. Your body is crumbling. And, again, it’s things that with traditional treatment you don’t always encounter. And of course, the side effects from traditional treatment are also horrible, too.

… if something isn’t sitting right with you even once you’re diagnosed, you know, if your doctor is telling you, oh, you should do this and something’s just not sitting right, get a second opinion. Get a third opinion if you need to.

You have to feel comfortable with your care.

NED Status

I reached NED within a year of starting Cabometyx, which is, like, insane. Incredibly hard to come across, to say the least.

I had a very rare response where I was 1 of only 2 of the 147 patients who had a complete response to treatment.

I wound up staying on Cabometyx for another about three years, because we just didn’t know what was going to happen after I had that first med scan. And so in 2020, my oncologist said, look, I think the side effects will kill you before the cancer does. Let’s see how you do coming off of it, which was terrifying because at that point it was my security blanket, right?

But I did successfully transition off Cabometyx. I stopped treatment in April of 2020, and now I have scans every six months. And thankfully I have had NED scans ever since. I just had a scan last January: I’m still NED. So I’m really, really fortunate.

And now I’m actually a patient advocate for the GU committee. And so I’m now actually working with the doctors that concluded the trial that I was on that saved my life.

So it’s honestly one of the most meaningful things that I do in my advocacy work, because it’s just a complete full circle.

Knowledge is power in every sense of the word.

You are a better patient if you are knowledgeable about your disease.

Words of Advice

I really encourage people to trust their instincts when it comes to their health. You know your body best, you know if something’s wrong with you. And I really wish I would have just kept listening to that little voice that I had in my head. You know, in my heart that said, Laura, something’s wrong. I’m glad that I finally did, because that’s what encouraged me to go to the ER that night.

Again, I would just go back to if something doesn’t feel right, listen to your body. I think even as cancer survivors, we tend to dismiss things sometimes, and so even if you’re in your cancer journey or you’re a survivor, you have to. It’s advocating for yourself as a lifelong responsibility.

And, you know, I’ve had the unfortunate gift of being not just a patient, but also a caregiver to my mom who passed away five years ago from complications of kidney cancer and lymphoma.

Also, I really encourage you, especially if you’re a younger patient who has a rare cancer, get genetic testing done. I encourage my family members to get genetic testing done, and receive their carrier for it as well.

And I always encourage anyone who has any kind of outliers in their health history that would indicate maybe they could benefit from genetic testing to take the tests. I know it’s scary to have a genetic disorder diagnosed, but I really wish I would have had the opportunity to know I had my disorder before I had cancer.

Knowledge is power in every sense of the word. You are a better patient if you are knowledgeable about your disease, which is what I really try to encourage patients and caregivers to do, to understand their disease.

And also, if something isn’t sitting right with you even once you’re diagnosed, you know, if your doctor is telling you, oh, you should do this and something’s just not sitting right, get a second opinion. Get a third opinion if you need to. You have to feel comfortable with your care. And if you’re not, you know it.

So you’re the best person that’s most knowledgeable about yourself, your body. Honor that in all the ways.

Thank you for sharing your story, Laura!

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Roger’s Stage 2 Pancreatic Cancer Story

Post author By Chris Sanchez
Post date February 22, 2024
10 Comments on Roger’s Stage 2 Pancreatic Cancer Story

February 22, 2024

Roger’s Stage 2 Pancreatic Cancer Story

Interviewed by: Alexis Moberger
Edited by: Chris Sanchez

Roger, a lawyer into startups and the venture capital scene and a sports enthusiast, hails from Silicon Valley in Palo Alto, California. He discovered that he had pancreatic cancer in 2022.

Roger enjoys a very active lifestyle and strives to live a healthy life, but suddenly suspected he had cancer after his blood sugar increased and he started to lose weight. A liquid biopsy–a Galleri blood test by the healthcare firm GRAIL–revealed strong signals for certain types of cancer, including pancreatic cancer. An MRI from the company Prenuvo found a mass on his pancreas, and a CT scan and tissue biopsy confirmed that he had stage 2 pancreatic cancer.

Pancreatic cancer is often seen as incurable and fatal, but Roger refused to accept this. His take-charge attitude to his health led him to conduct extensive research into his illness. Being based in Silicon Valley also gave him access to excellent medical care, but his openness to cutting-edge medical treatments–as well as the urgency of his case–brought him further afield, including to Japan, where he got the first dose of an advanced cancer vaccine.

Roger also made certain significant changes to his lifestyle, with an eye towards not only staying healthy, but also making his body as inhospitable to cancer cells as possible.

Roger is no longer on chemotherapy and undergoes follow-up protocols every 6 months. He shares his story to encourage cancer patients to be more assertive regarding their illnesses and overall health, to do their own research and seek out the best treatments available, to refuse to settle for “standard of care” treatment, and, lastly, to never give up hope.

Name: Roger R.
Diagnosis:
- Pancreatic cancer
Staging:
- Stage 2
Initial Symptoms:
- None
Treatment:
- 5FU (folfirinox)
- Gemzar (gemcitabine)
- NK cell expansion therapy
- Dendritic cell expansion therapy
- Neoantigen peptide vaccine

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

Table Of Contents

Roger's Stage 2 Pancreatic Cancer Story

Your health care, your health is just too important to trust to a doctor, as odd as that sounds… It is my personal experience that you have to take charge yourself.

You have to tell your doctor what tests you want run. You have to tell your doctor what you’re concerned about. You know your body better than anybody does.

And if you think just even subconsciously, that there’s something going on that shouldn’t be, you need to tell them.

Introduction

I’m a lawyer and I do startups and venture capital in Silicon Valley, California, in the Palo Alto area.

In terms of hobbies, I work out a lot. I swim, bike, run, hike, do resistance training, winter mountaineering and ice climbing, rock climbing in the spring and summer–pretty much every sport and every activity you might imagine. I stay very active.

Pre-Diagnosis

Signs and not Symptoms

At the time, before I was diagnosed, I didn’t think anything was wrong. But looking back on it, let’s say I had no symptoms, but I did have signs. There were clues. And the one big one that I and my doctors completely missed was that my blood sugar increased just slightly. You see, my blood sugar has always been exactly where I want it to be.

And so I went in and I got blood tests. The doctor said, well, that just happens. You know, fasting glucose is kind of all over the place. Your a-1c is fine. It probably doesn’t mean anything. And I said, well, it must mean something. It’s higher than it was before. She said, well, we’ll come back in three months and test it again.

So I came back in three months and it had gone up even more. Not only that, I’d also lost 5 pounds in the meantime. And I Googled it, of course. And that was my first clue, because there’s like a million things that could cause that to happen, one of which is pancreatic cancer.

I know now that that always happens with pancreatic cancer, weight loss and blood sugar increase. I didn’t know it then.

Diagnosis

Galleri Blood Test by GRAIL

I went and got a battery of other tests, one of which was a liquid biopsy that first disclosed my cancer. So I used a blood test by Galleri by GRAIL. We call it liquid biopsy. This is a blood test that can detect 50 different cancers. They take blood, not tissue, and they can examine it and look for protein markers using strong AI to assist it, that will identify markers of different types of cancers and the tissue of origin.

Here’s the story of how I ended up getting a Galleri test.

Because I’m in Silicon Valley, I’m at the cutting edge of every new technology that comes out. And I’d heard about these tests being developed, and I’d been asking for them year after year. But the response was always the same: no such thing, it doesn’t work, it’s not available yet, you can’t have it, the FDA hasn’t approved it. Well, I was sitting in an airplane in April of 2022, reading a Tony Robbins book, and it mentions the Galleri test. And as soon as I landed, I started investigating.

Now, it took me a couple of months to actually get that test because a doctor has to prescribe it. That is just the rule in the U.S. I pushed ahead and found a telemedicine doctor that would prescribe a test.

I found an institution that advertised that they were all about preventative care. They’re all over the TV, a lot of advertising promoting that. What I liked about them is at least they didn’t say no, but I still had to tell them what I wanted. So like I told them long before this happened, I gave them a list of blood tests that I wanted, including the Galleri test.

It took about a couple of weeks before I got the results from the test. The doctor called me up and said, look, we found some signals for pancreatic or gallbladder or stomach or esophagus. And you should do further testing. It doesn’t mean you’ve got cancer. It just means we found strong signals, especially for pancreatic cancer.

And based on that, I went in for an MRI the very next day.

Prenuvo MRI

Well, again, you can go into your hospital and you can wait around until they come back from vacation and get around to scheduling you. Hopefully they’ve got the personnel to do it, and so on.

I didn’t do that. I went the very next day and got a private scan from a company named Prenuvo, which is right down the street from my house.

The results from the MRI took about a week to come back. It found a mass on my pancreas–a pretty imposing, concerning-looking mass. It was not well defined; it was large. In fact, they didn’t even think it was resectable.

So the Galleri test was alarming because they found the signal, the Prenuvo test was more alarming because it confirmed there was something going on in my pancreas that did not look good.

CT scan and tissue biopsy

Based on the MRI’s findings, I went to a CT scan and a tissue biopsy where they actually examine tissue. I had to get into the system because then I needed more sophisticated things. CT with contrast, biopsies, endoscopes, stuff like that.

And the CT scan and biopsy confirmed a diagnosis of stage two pancreatic cancer.

Primary care doctors’ attitudes

Now, prior to this point, what I heard from my primary care doctors was mostly: quit bugging me about this. It’s not serious. You’re not diabetic. You’re not pre-diabetic. You have no symptoms. And I’ll never forget these words. That is unnecessary testing. Boy, it was not unnecessary at all.

I guess I’ll admit, maybe I’m a little of a hypochondriac, but I want to check out every little thing. It’s just my personality.

This is the one big message I would like people to have.

Your health care, your health is just too important to trust to a doctor, as odd as that sounds. And as much as it pains me to say that, it is my personal experience that health is too important to trust to a doctor, you have to take charge yourself. You have to tell your doctor what tests you want run, and what you’re concerned about. You know your body better than anybody does. And if you think just even subconsciously, that there’s something going on that shouldn’t be, you need to tell them.

Reaction to the Diagnosis

I went through all of the stages of grief in about 12 hours, I think. Bargaining, anger, whatever they are. Sadness, acceptance.

The conventional wisdom about pancreatic cancer, what American Cancer Society says, is that it’s incurable and fatal. Stage two has a life expectancy of about 1 to 3 years on average.

Like a lot of cancer patients, I was angry at my doctors. It’s like, how could you let this happen to me? Until I finally came to the realization that, hey, it’s not their job to keep me healthy. That’s my job. This is my failure, not theirs.

Their job is to fix me when I’m sick, and that’s why I kept hearing from them. Come back when you’ve got symptoms. So, big lesson, find a doctor that’s willing to work with you and prescribe what you need to take care of your concerns. But then go out and self-educate and make sure you’re covering all the stuff that is silent or symptom free.

Another thing is that, yes, the statistics regarding pancreatic cancer are really bad–and even many prominent doctors will say things like, pancreatic cancer is a death sentence at any stage–but what I came to discover is that all of those doctors are looking at backward-looking data. Plus, that data is kind of old because you’ve got to wait a certain number of years to get it.

The statistics are based on the United States standard of care, on what we’ve done in the past under it. They are not based on what’s going on, going forward, and what’s out there in the future and what’s beyond standard of care.

And, also, statistics are very misleading because you have to make generalizations.

I talked to a lot of cancer patients and survivors, and one of the pancreatic cancer survivors I talked to–one of the few who’s survived for 12 years since his diagnosis–said, really, you have to think of yourself as a statistic of one, because every person is unique, every cancer is unique. It’s so hard to generalize and place your faith in those generalizations.

Big lesson, find a doctor that’s willing to work with you and prescribe what you need to take care of your concerns.

But then go out and self educate and make sure you’re covering all the stuff that is silent or symptom free.

Treatments

Since I live in Silicon Valley, I’m lucky to have access to two of the best institutions–Stanford Health and UCSF in San Francisco. They both have very well respected oncology departments and some of the best cancer doctors in the country.

I think I had top quality care from my doctors, and I am very grateful. But it wasn’t easy because I think our US medical system is just generally overwhelmed. And it’s just hard to get attention to get in. But again, this is where the patient has to be CEO and has to take charge. You have to be very, very assertive about these things. And I was very, very assertive.

Once, I did get in front of an oncologist and they saw the numbers, scans and blood test results, then everything changed. And all of a sudden my case was urgent. Because pancreatic cancer is very aggressive, very fast-moving, you can’t wait 2 or 3 months to go get a scan.

So they moved me along really quickly and put me into treatment quickly.

Chemotherapy: 5FU (folfirinox) and Gemzar (gemcitabine)

I talked to lots of doctors when it came to my chemotherapy. You know, a second opinion isn’t good enough for me. I think I spoke with a dozen oncologists before I decided on anything, because there are a lot of different options and it’s all up to the patient. You, the patient, have to decide which chemo you are going to get.

So ultimately at one point I just asked my oncologist. I said, wait a minute, are you telling me that this is up to me? And he says, yeah, I’m afraid so. You tell us. You have to decide. These are your options. This is what I recommend, but these are your options.

So we first went with 5FU (folfirinox). I will say that there’s a pathologist who looked at my tissue who says we guessed wrong. According to the pathology report, there was no treatment effect, so we switched chemo to Gemzar (gemcitabine). Three months of chemo, surgery, and three more months of chemo. And I ended that in February of 2023.

Side effects of chemotherapy

I had every side effect that you could possibly have from the chemo, plus some the doctors had never seen before.

The first thing my oncologist told me when I met him is, I want to apologize in advance for what I’m about to do to you. We’re going to be very aggressive about the chemo because you look like you’re strong enough to take it. And the thing about chemo, like most medicine in the US, you give the minimum effective dose, right? With chemotherapy it’s the maximum tolerable dose. Well, it turns out I can tolerate a lot.

So I had six months of just pure hell. I mean, it was pretty miserable. It looked like I had aged 20 years. It was super unpleasant.

Even though I’m cancer-free now, some of these effects are still with me. I still have some neuropathy, for example, and chemo did things to my arteries that I did not think would happen.

To combat the side effects of chemo, I was given a whole bunch of drugs and painkillers and anti-nausea and anti this and inhibitor that. I didn’t take any of them.

It’s like, you know what? The chemo is enough. it’s hard enough on my liver. I like my liver and my kidneys. So I didn’t take any of those drugs.

I said I would rather just lie here on my bathroom floor for a week and suffer than take any more drugs. And that’s what I did.

And I don’t recommend that approach to anybody else other than a masochist like me.

Advanced treatments (neoantigen peptide vaccine, NK cell expansion therapy, dendritic cell expansion therapy)

One of the treatments I’ve taken that is very cutting-edge and forward-looking is a cancer vaccine–a neoantigen peptide vaccine. The vaccine is not like a drug or a checkpoint inhibitor. You’re using your own cells.

I also received NK cell expansion therapy and dendritic cell expansion therapy, as well as some other things. Next month, I’m going in for a second round of a different set of targets, same concept, neoantigen peptides.

It took me a little while to find people that do this legitimately. But I did find these groups–and last year, I got my vaccine.

From the day I was diagnosed, I read NIH papers, PubMed papers, every single day. And I’ve gone down so many rabbit holes, you can’t imagine.

I read about a woman who lives in my neighborhood in Northern California who had stage four pancreatic cancer, and she got this vaccine–and afterwards, she went into a complete and total response, total remission. And I said, okay, I think there’s something there. I found it just through research.

I went to Japan to have mine, the first round anyway, because they are not subject to FDA rules, so they can move more quickly. And with pancreatic cancer, it’s important to move quickly. I didn’t want to wait around, so I went to Japan and got it done quickly.

Importantly, the physician I chose there also has his own lab, and that’s really important. So the administering physician also could get it from his own lab and I didn’t have to worry about any disconnect between those two components.

Now, I’m getting this vaccine in the United States under an expanded access application to the FDA. They also call that compassionate use, and that is an approach. But it’s another big red tape bureaucratic process that we should not make people go through. Furthermore, over here, it’s out of pocket and is very expensive, and I acknowledge that it may be simply beyond the reach of a lot of cancer patients. It costs so much because it’s not FDA approved. I’ve written and testified to the FDA about it. I’ve been beating a drum that we really need.

Now, I will tell people who are considering this vaccine that in Japan, it costs about one fifth of what it costs here. So take that for what it’s worth.

Lifestyle changes

As I sit here today, I am cancer free, at least for now. And you might ask, why is that? Well, I can’t tell you. It might have been the chemo, having had surgery at the exact right time, or metabolic factors. It was no doubt partly lifestyle changes.

I had to say to myself, what could I improve in my life that would make my body as inhospitable as possible to a cancer cell? And I made major, major changes.

Firstly, my diet is much different now than it used to be. It is as anti cancer diet as they come.

I was a vegan for five years before my diagnosis, which I thought was the healthiest diet you could possibly have. What I have since discovered is that it is not.

To get enough calories, given my exercise schedule, I just had to eat too much processed carbs and sugar. In retrospect, I see that I had the exact diet you would have if you were trying to get sick. I was just flooding my body with too little protein, too little fat and too little plant based whole foods and too much processed carbs.

Now that I wear a blood glucose monitor, I can see what they do to your body. And so I had to change. I’m not keto, but I am low carb.

So I keep my protein high so I can keep my muscle lean muscle mass high. And then fats. I’ve kind of shifted from saturated fats to healthier fats, the monounsaturated, polyunsaturated fats. No sugar, no alcohol, no processed carbs, very little red meat. Very little processed meat.

I eat so many vegetables, a lot of fiber, a lot of things good for the microbiome, sprouts for sulforaphane, stuff like that. Citrus, lemons, though not oranges. They’re a little too sugary for me.

I exercise a lot because that is probably the number one thing. Heavy exercise, studies show, reduces the risk of cancer recurrence by 50%.

And then there’s supplements. There’s cortisol. There’s sauna heat therapy. I learned in Japan that it creates heat shock proteins that a normal cell can manage just fine. But a heat shock protein to a cancer cell completely messes it up and maybe makes it visible to your immune system, or maybe just kills it through mechanical stress.

I’ve really gotten into cold therapy, cold water, ice baths.In the wintertime, I’ll go run in the snow with just my running shorts on as long as I can stand it. I think the cold therapy has made my immune system a lot stronger than it was. And it also increased the brown fat in my body. And I’ve got the DEXA scans to back that up, and that has reduced my blood glucose, which means that it’s less likely that these sugar hungry cancer cells are going to get all the nutrition that they want.

… don’t lose hope. Because everything is moving so quickly.

Words of Advice

Firstly, being your own advocate is super important and you just have to be assertive about this. That’s hard for a lot of cancer patients. It’s hard to demand that your doctor do stuff when they’re the expert–what do you know? But you’ve just got to be your own advocate and you have to self educate.

Number two is, if you do standard of care treatment, you’re going to get a standard of care result. And that’s all those bad statistics you’re looking at. Those are all standard of care statistics. You’ve got to be willing to go a little further than that.

And then the third thing is don’t lose hope. Because everything is moving so quickly.

Finally, it’s become obvious to me that our solution to cancer is not going to come from our traditional sources: big pharma, big government, public companies that have shareholders to report to. It’s going to come from the people I work with, startups.

We need companies that are willing to swing for the fences and try something big and bold and novel.

I really believe that the big, disruptive, game-changing cancer cure is going to come from my people, the startup community.

Thank you for sharing your story, Roger!

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Tags 5FU, Dendritic cell expansion therapy, Folfirinox, Galleri blood test, Gemcitabine, Gemzar, Neoantigen peptide vaccine, NK cell expansion therapy, pancreatic cancer, Patient Stories

ABVD Chemotherapy Hodgkin Lymphoma Patient Stories Treatments Uncategorized

Rachel’s Stage 4 Hodgkin Lymphoma Story

Post author By Chris Sanchez
Post date January 29, 2024
No Comments on Rachel’s Stage 4 Hodgkin Lymphoma Story

January 29, 2024

Rachel’s Stage 4 Hodgkin Lymphoma Story

Interviewed by: Alexis Moberger
Edited by: Chris Sanchez

Rachel was diagnosed with Stage 4 Hodgkin lymphoma at age 44. After initial misdiagnosis including eczema and other conditions, her symptoms progressed and her cancer was finally diagnosed correctly. She was initially hesitant to undergo chemotherapy, but upon learning that she would have approximately 6 months to live without it, and after consulting her family and other specialists, she agreed to undergo treatment. She was then put on chemotherapy for 6 months.

Rachel is from Almondsbury in the UK. Having been trained in musical theater, she has taught singing and drama in theater schools and has run her own business teaching singing for the better part of a decade.

Rachel’s cancer is now in remission. She shares her story with us–including her key challenges, frustrations, and struggles, and some important lessons and takeaways–in the hope that other cancer patients can benefit from and be inspired by her experience.

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

Name: Rachel E.
Diagnosis:
- Hodgkin Lymphoma
Staging:
- Stage 4
Symptoms:
- Extremely itchy rashes
- Nausea
- Nosebleeds
- Severe fatigue
Treatment:
- ABVD chemotherapy
- Steroids
- Dexamethasone
- Antivirals
- Acyclovir

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

Table of Contents

Pre-diagnosis
Diagnosis
Treatment
Remission
- Processing the News
Realizations and Takeaways

I feel really positive. Because I’ve realized that my life was saved for a reason. And that starts with getting my story out there.

Pre-diagnosis

History of Illness

Long before my diagnosis, I was ill for quite a while, and I suspect that I may actually have had cancer even then.

In my 20s and 30s, I was a lot heavier. Over the years, I started to lose weight very gradually and very subtly. Since everybody knows that middle-aged women tend to gain weight as they get older rather than the reverse, this was a bit of a red flag.

I have a son. When I was pregnant with him back then, I was really ill. I had obstetric cholestasis. I found out through research that pregnant women who have obstetric status in pregnancy are at greater risk of developing cancer.

At the time, I also experienced severe nausea and terrible itching on my palms, the soles of my feet, and so on. I was induced and my son was born early because there was a risk of stillbirth. After giving birth, I lost a lot of weight quite quickly—and I do know that a lot of women take a while to regain their shape after giving birth.

Aside from my experience during pregnancy, I was always suffering from diseases like respiratory tract infections—tonsillitis, bronchitis, a whole heap of stuff—one after the other. Whatever was going around, I caught it.

Initial Symptoms

I knew that something was really, really wrong in the spring of 2020.

I developed a rash on my arm and I went to see the doctors. But COVID had just arrived and the doctors had far more interesting things to deal with.

My frustration was mounting because I knew that there was something really, really wrong and no one can get to the bottom of it.

Diagnosis

First Appointments, Misdiagnoses, and Progression

The doctors said it was eczema and I said I didn’t get eczema that way, but they insisted.

The rash went away, but in the spring of 2022, it returned with a vengeance. It was worse than before. The rash was so extreme that I broke the skin several times by scratching and it kept me up at night. Yet they kept saying it was eczema.

I also suffered from dizziness and nosebleeds on various occasions. Dizziness while putting my washing out on the line, staying in the kitchen, and other times; recurring nosebleeds that may have coincided with my menstrual cycle and even took place around the time I miscarried.

One lump turned to 2 then 3 then 4, and before I knew it, my legs were all covered in lumps. My rash had spread to cover the whole of my body save for my face. It was so intensely itchy that I couldn’t sleep and had to keep spreading cooling cream on myself.

The doctor suspected that I had tuberculosis or an autoimmune condition and sent me to have a chest X-ray. I was thinking he was going completely down the wrong path, but at this point, I was absolutely desperate so I agreed.

Getting the Correct Diagnosis

I didn’t think the chest X-ray would reveal anything, but it actually showed a shadow on my lungs.

I was fast-tracked to hematology where I was sent for a CT scan, which revealed that the lymph nodes in my chest and neck were swollen.

A needle biopsy of one of the lymph nodes came back as what they thought was stage 3 Hodgkin’s lymphoma.

Finally, the doctors ordered a full body PET scan, which revealed that what I actually had was stage 4 Hodgkin’s lymphoma and that it had started to creep into the edge of my lungs.

I asked the doctor about chemotherapy. Life had been pretty rubbish up to this point and I was on the fence about whether to take it or not. If I didn’t take the chemo, I asked him how long I had. He said six months.

Treatment

Considerations

I behaved a little bit like a child when I got the diagnosis. I felt completely boxed into a corner like I had no options aside from either chemo or death. What I did know about chemo scared the living daylights out of me.

I didn’t want to lose my hair. I’ve always had really good hair and I’d literally die rather than lose my hair.

There was also fertility. I’m really, really grateful for my son, but I’ve always longed for another child. I’ve suffered two miscarriages. I don’t qualify for egg freezing because in the UK, if you have one child, you’re already a parent and are automatically disqualified from egg freezing.

I talked it through a lot with my husband, my sister-in-law, a psychologist, nutritionist, physiotherapist, and clinical nurse specialists and decided to get on with it, even though my first session on October 4, 2022, very sadly coincided with my parents’ golden wedding anniversary.

I behaved a little bit like a child when I got the diagnosis. I felt completely boxed into a corner, like I had no options aside from either chemo or death.

ABVD Chemotherapy and Medicines

My chemotherapy was a cycle made up of two lots of infusions.

My treatment took place every two weeks. I would go in and have these IV medicines put in my PICC line then I would have my chemo on the same day as well. My first chemo session was made up of the PICC line going in and my first lot of chemo.

My sessions were once every two weeks for six months. Every other week, I would have a pre-chemo appointment to make sure that I was well enough to undergo treatment.

By the way, it wasn’t just IV drugs. Every day I had to take medicine at home as well. I used to load my pill box and take pills at home: steroids, dexamethasone, and then antivirals, acyclovir.

Side Effects of Chemotherapy

I had loads of side effects. The doctor said I had pretty much every side effect under the sun.

The first time was the worst, definitely. I started feeling unwell in the chemo chair. When I got home, it knocked me out. For days afterward, my self-care went downhill. I didn’t have enough energy to do anything apart from go to the toilet and brush my teeth—and even that felt like climbing a mountain.

I felt very, very cold when the chemo went in. My whole body was really, really cold. I immediately started bloating like a balloon. I could feel my stomach swelling when the IV drugs were going in. I also immediately started feeling quite nauseous.

I would come home after treatment, change into my pajamas, and get into bed feeling very nauseous and very bloated. I’d have a lot of stomach pain, and I’d lie there and wait for it to ease off and get a little bit better.

I’d have a lot of little pain in my legs, like a burning sensation, from fatigue. My legs would sort of give way on me. I literally felt like, How on earth am I going to get to bed? The fatigue was just insane.

I’d wake up in the morning and feel really thirsty straight away. I suffered from hemorrhoids, constipation, ulcers, cuts, and angular colitis. Cuts at the corner of my mouth. The hemorrhoid pain was absolutely the worst.

All that being said, I’d never been hospitalized or even had a temperature.

Dealing With the Side Effects

Soup, fresh air, and hugs helped with the side effects. Basically, distracting myself, like with things to watch. A lot of comfort-watching—whatever made me feel good. Whatever was funny, lighthearted, or anything familiar.

It was literally pure survival mode, anything just to get me through.

Remission

Apart from the side effects, everything went amazingly well in terms of progress.

Two cycles in, I had a PET scan that showed that I’d had a complete metabolic response. The doctors said, “We couldn’t ask for better than that.”

Everything in me wanted to stop. Surely I’m cured. But they said it doesn’t really work that way so I had to undergo about four more months of chemo.

Eventually, at the end of the chemotherapy, about six weeks after it stopped, I had another PET scan that showed that I’d had a complete response.

All the scans after chemo showed the best possible results.

Hang in there. Be patient because your emotions do catch up. Just give them time.

Processing the News

When I was told I had the all-clear, I didn’t feel a single emotion. I didn’t feel shocked, sad, confused—not even happy. It wasn’t as if I’d reached the pot of gold at the end of the rainbow.

I think it was like that for different reasons. My life had been a struggle before I was a cancer patient and now that my cancer’s been dealt with, all my concerns were still there. I had to step back into it and continue with it.

Eventually, I felt really bad and guilty about this because there are people out there who want to live. I felt guilty that I didn’t feel happy.

I called the UK cancer charity Macmillan and asked for advice. I said, “Is how I feel normal?”

The lady I spoke with was ever so kind. She said, “You’re perfectly within your rights to feel exactly what you’re feeling. No judgment. No guilt. Whatever you’re feeling, even if you’re feeling nothing, that’s completely okay.” It was really lovely to connect with someone and hear those words.

I also found that having access to mental health services was absolutely necessary in terms of processing and moving forward. I had access to a psychologist through the UK National Health System. We determined that not everything that I talked about was related to cancer.

There were things we worked through that were issues before I had cancer, as well as those that will happen in the future. Honestly, I don’t think that my mental health would be in a good state right now if I hadn’t had access to a mental health professional.

Now, I feel really positive. Because I’ve realized that my life was saved for a reason. And that starts with getting my story out there.

Although initially, I wanted to look into medical negligence. I do believe my cancer could have been found years earlier with all my recurrent illnesses. I made a formal complaint in terms of the very late diagnosis of my cancer. I do plan to tell my story as well as complain. Now the complaint’s been dealt with.

Cancer is a life-changing experience. I’ve heard it said that if you have cancer, you’re never the same person you were before.

I think that if you have cancer and you’re still here to tell the tale, you’re still here for a reason.

Realizations and Takeaways

To cancer patients and caregivers who may also be feeling numb like I did, I’d say, hang in there. Be patient because your emotions do catch up. Just give them time.

I also want to say that my faith helped me. I’m a Christian and I feel that it’s as if God had His hand over the cancer, hovering over the edge of my lungs, and caught it before it could enter a major organ. Now I can say that it was not my time to go, even though I felt it had been my time for a long time.

Your body is incredibly clever at telling you that something is wrong. I knew the rash was not eczema. I knew something was really out of balance and I shouldn’t leave it alone. If I had left it alone, I wouldn’t be here today.

I kept going back to the doctor because intuitively, I knew something was wrong. I think the body tells you before the brain does, and the brain catches up. It’s just that we don’t really stop to listen.

Cancer is a life-changing experience. I’ve heard it said that if you have cancer, you’re never the same person you were before. I feel like I had a near-death experience insofar as if my cancer hadn’t been found, I would have died. I think that if you have cancer and you’re still here to tell the tale, you’re still here for a reason.

It’s a chance to regroup, to really look at your values, what’s important to you, and what you want your future to look like, considering you nearly didn’t have a future. What is really important and what isn’t so important: family, life, work, and faith.

Thank you for sharing your story, Rachel!

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Palbociclib Side Effects

December 13, 2023

Palbociclib Side Effects & Patient Stories

Written by:

Chris Sanchez

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

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

Table of Contents

Palbociclib Side Effects & Patient Stories

What is palbociclib, and what is it used for?

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

Is palbociclib chemotherapy?

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

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

Abigail, Stage 4 Metastatic Breast Cancer

What are CDK 4/6 inhibitors?

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

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

How and when is palbociclib used?

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

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

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

Bethany, Stage 4 Metastatic Breast Cancer

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

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

How much does palbociclib cost?

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

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

Palbociclib isn’t currently available in a generic version.

How effective is palbociclib?

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

What to expect when taking palbociclib

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

Palbociclib side effects

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

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

Abigail, Stage 4 Metastatic Breast Cancer

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

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

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

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

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

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

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

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

Foods to avoid while on palbociclib

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

Stories of patients taking palbociclib

Stacy S.

Diagnosis: Myelofibrosis with CALR and ASXL1 mutations
Symptoms: Fatique, cold hands and feet
Treatment: Agrylin (for thrombocythemia), Ruxolitinib (Jakafi), Fedratinib (INREBIC), stem cell transplant

Ruth R. Diagnosis: Myeloproliferative Neoplasms (MPN) Treatment: Chemotherapy, Bone marrow biopsy, clinical trial

Natalia A. Diagnosis: Myelofibrosis Symptoms: Anemia, fatigue, weakness, shortness of breath Treatment: Phlebotomies, iron pills, blood transfusion

Mary L.

Diagnosis: Myelofibrosis (MPN)
1st Symptoms: Fatigue, extreme dizziness (later diagnosed as vertigo)
Treatment: Pegasys, hydroxyurea (current)

Kristin D.

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

Joseph C.

Symptoms: None; caught at routine blood work
Treatment: Clinical trial: VONJO (pacritinib)

Jeremy S.

Diagnosis: Myeloproliferative Neoplasm (MPN), Polycythemia vera (PV) and Chronic Lymphocytic Leukemia (CLL)

Doug A.

Symptoms: Fatigue
Treatment: ruxolitinib, selinexor (clinical trial)

Cathy T.

Diagnosis: Myelofibrosis

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

Andrew SchorrDiagnosis: Myelofibrosis, Chronic Lymphocytic Leukemia (CLL)Treatment: Clinical trial, Gazyva, Jakafi, Increbic, Reblozyl and steroids

Sources

About IBRANCE

U.S. Food and Drug Administration (FDA)

BreastCancer.org

National Cancer Institute (NIH)

The Mayo Clinic

MedlinePlus

Drugs.com

OncLive

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

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