In the parlance of cancer treatments, I am currently on my fifth (5th) line, meaning the fifth (5th) set of medications to treat the cancer in my body since 2017. For anyone who is curious, here are the lines of therapy that I’ve been on thus far:
- Adriamycin and cytoxin — June/July of 2017
- Ibrance and Letrzole — August 2017 to August 2019
- Piqray and Faslodex — August 2019 through March 2020
- Piqray, Faslodex and Kisquali — March 2020 through October 2021
- Verzenio and Faslodex — October 2021 through January 2022
- Taxotere and Xeloda — January 2022 through May 2022
- Xeloda — May 2022 through present.
Yes, I know that there are seven (7) entries listed and I said I’d only been on five (5) lines of therapy. I’m not sure if I am considering these entries correctly myself, so if anyone is knowledgeable about how to count lines of therapy, I’m all ears. I look at times when we added or dropped treatments as not changing the number of lines, so 3 & 4 and 6 & 7 are more together than separate. We’d also started that first line while we thought I was Stage II, so still not entirely sure that counts as a line either since at that point we still thought a cure was possible. It can get confusing!
Anyway, Xeloda (Capecitabine) is a rather old medication that has been approved by the FDA to treat several different types of cancer, including breast cancer. It is categorized as an oral chemotherapeutic agent versus targeted therapy like most of the other oral medication that I’ve taken in the past. We’d combined Xeloda with Taxotere (an IV chemotherapy) earlier in 2022 for six (6) cycles (January through May) and then tested to see if Xeloda alone was sufficient. It has been.
One of the most difficult side effects to deal with has been hand-foot syndrome or Palmer-Plantar Erythrodysesthesia. As I understand it, the medication actually leaks out of the capillaries in the hands and feet, causing burning, redness, peeling, etc. It’s hard to describe how hard it can be to walk, to grasp the steering wheel and so many other activities that I frankly took for granted. While not everyone taking Xeloda experiences this particular side effect, it seems pretty prevalent based on discussions I’ve had with others. In groups of people taking Xeloda, there are often tips and tricks shared between patients.
One such tip is utilizing topical heparin.
Heparin is a blood thinner and is only accessible in the US via a prescription. In Europe, you can find tubes of topical heparin over the counter at a drug store. The way I understand it, heparin applied topically can shrink those capillaries in the hands and feet so that the medication doesn’t leak out and affect the skin. Unlike topical steroids, which are often prescribed for hand foot syndrome, there aren’t as many side effects with topical heparin. If you are interested in learning more, here’s a National Cancer Institute (NCI) publication on a small study looking at this use.
When I learned about the study and saw that others in the Xeloda Facebook Group were talking about it, I reached out to my local medical team to find out if I could try it. One of the pharmacists at my local cancer center contacted me and shared how he’d never heard of this and wasn’t persuaded by the small study to recommend to my doctor to prescribe it. He offered me topical steroids, which carried side effects that I didn’t want to risk, even while acknowledging the lack of side effects with topical heparin. Then, I reached out to my integrative doctor at Mayo in Jacksonville. Unsurprisingly, she’d been using topical heparin to treat hand-foot syndrome caused by Xeloda and had a great compounding pharmacy who knew how to dose it.
Around this time period, we also adjusted the timing of how I take Xeloda from two weeks on, one week off, to week on week off. I’ve now been using topical for about four (4) months, which I receive in the mail from that compounding pharmacy. That addition as well as the timing change has meant that the symptoms of hand foot syndrome have disappeared. At the end of the week of taking Xeloda, I do start to feel some painful twinges that come and go, especially in my feet first thing in the morning, but nothing consistent or debilitating like it was before these changes.
I also got back to my local team and shared my experiences. The pharmacists are now supportive of prescribing topical heparin to other patients and I’ve shared the dosing from the compounding pharmacy where I get mine to assist.
To me, this is a perfect example of how patient support other patients. By sharing our experiences and how we deal with side effects, we can positively affect other patients and even see larger changes in how other patients are treated or offered solutions. Our medical teams aren’t always able to identify solutions in light of the complexity of treating cancer and I don’t fault them for this, by and large they do their best. Those of us who live with the side effects of medication every day are motivated much differently to seek out and try different options.
I’m not a doctor or a medical person, so please don’t take this post as medical advice, simply my own experiences. If it’s helpful for someone else, then that’s wonderful!
No Half Measures 
Hello Abigail – thanks so much for sharing this story. Thank goodness for the “tips and tricks” you found through your patient contacts and Facebook group – and especially for your Mayo doctor!
What struck me (no matter the specific diagnosis, since I’m guessing this scenario happens all over medicine) was this part of your heparin story:
“One of the pharmacists at my local cancer center contacted me and shared how he’d never heard of this and wasn’t persuaded by the small study to recommend to my doctor to prescribe it…”
It’s absolutely maddening (and completely unacceptable) that one uninformed person in a pharmacy can make a sweeping decision about a potential remedy with no side effects. He’d “never heard of it” – therefore it must not work.
We see this in all sectors of medicine, too. As Susannah Fox once said: “Patients know things.” But why must patients (often very sick patients) have to FIGHT professionals like your cancer center pharmacist to get relief for distressing symptoms on top of everything else they’re enduring?
Take care, and thanks again for sharing this.
xoxo
C.
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You nailed it — the fact that one person was able to block something that has proven to be extremely beneficial is scary. Frankly, I believe that ego played a part here. He told me that he’s never had a patient bring a study to his attention like I did. Because I wanted to try it before going with medication that had other side effects, I figured it out, but I’m always cognizant that there are patients who aren’t able to do that. I’m fully aware that there needs to be checks and balances to ensure safety and there really are a lot of crazy things out there; at the same time, there are lots of reasons why different remedies aren’t approved by the FDA or studied in large peer reviewed studies. While it worked out for me this time, the system itself needs correction. Always grateful for your support and interactions. 🙂
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I was on Xeloda for 11 months…a week on and a week off. The hand-foot syndrome was debilitating in many ways…constantly dropping things because I couldn’t really feel them, unable to open ziplock bags. My fingerprints even disappeared. As for my feet, they felt overheated especially in the middle of the night, peeled constantly and were numb. Swelling in both my hands and feet was a near constant. I’ve been off Xeloda (it didn’t work for my TNBC) since mid-August. Almost everything is back to normal except there is still some neuropathy in the balls of my feet and big toes. I wish I’d known about the topical heparin. I used every over the counter cream and ointment I could find and found very little relief. Thank you for sharing this information. I’m passing it on to my medical team. They likely have many patients who might benefit from your experience. I’m especially happy the Xeloda is benefiting you, Abigail.
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I’m so sorry to hear about how difficult your experience was with hand-foot syndrome. It is so debilitating. I also have no fingerprints and joke with my husband that now I can rob a bank or two and they can’t find me. (totally joking of course!)
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Thank you so much for this Abigail!! I am on Ribo/Let right now (although very extensive disease and things are starting to light up here and there a bit more so…). But, I have a couple friends with MBC on Xeloda. I cannot wait to share this information with them. I also think there might be a simple little typo?
“I also got back to my local team and shared my experiences. The pharmacists are now supportive of prescribing topical Xeloda to other patients.”
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I’m so sorry to hear that you may be experiencing progression soon, it’s never easy to handle no matter how much time we get to process it. Crossing fingers your current line lasts longer! Thank you for the info about the typo — something always gets past me. Appreciate you reading and commenting.
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I’ve been on xeloda, my first line of treatment since diagnosed with triple negative MBC in 2014. I started out on 1500 mg in the morning and 1500 mg in the evening- one week on and one week off. I got a dose reduction after a few months to 1000 mg in the morning and 1500 mg at night. After the dose reduction the hand foot syndrome got much better. I was told to use a moisturizer that has urea in it. I’m glad that you found something that helps you. Hope you have a long run on this drug!🤞
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I’ve had to change the dosages and the timing in order to find what works. Just another reminder about how different we all are. Appreciate your support!
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So good to hear that your persistence paid off and led you to a better outcome–and that your integrative medicine doc had experience that your pharmacist lacked. AND–that you’re now sharing this advantage with other patients. May Xeloda’s efficacy and your comfort continue uninterrupted.
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Thank you, much appreciated! It’s a little insane how hard we patients often have to work for a good outcome and side effect management.
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You’re 5th line in the your metastatic therapy. I don’t know your case, but your first chemo was likely curative intent- and you weren’t metastatic at that point…but just assuming. Prayers Xeloda keeps you stable 🙏
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Thank you! Much appreciated.
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I took Xeloda before in between my chemo thirteen years ago. It was quite expensive here.
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I’m so sorry to hear that! Xeloda has been the cheapest medication I’ve been on since my diagnosis in 2017 and the low copay has been a welcome relief.
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Medicines are expensive here and around that I was not a senior citizen yet so I didn ‘t have 20% discount on the cost of medicine. Even the oxaliplatin for my chemotherary was about 60K per bottle and that was every three weeks.
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I’m continually amazed at how profitable the pharmaceutical industry is. These costs are simply out of reach for so many and it pains me to see how money affects longevity.
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Abigail,
Thanks for this info! I forwarded the study to my onc team and their response was that compounded heparin wasn’t readily available, not covered by insurance (and thus very expensive) and not used in the USA for HFS (not fda approved). Do you have more info you can share that I can provide to them to change their position?
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I do get mine from a specialty pharmacy and, yes, have to pay out of pocket bc my insurance isn’t paying for it yet. It’s about $50 for a month’s supply. I’ve not experienced any issues with availability. Hope that helps a little!
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Could you share your integrative doctor’s name and/or the concentration of the heparin cream?
Thanks again,
Lanne
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Here’s a link to my integrative doctor: https://www.mayoclinic.org/biographies/mussallem-dawn-m-d-o/bio-20055494. It’s 1000 units of heparin/gram.
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