Sep 07, 2013 - 9:46 pm
I recently finished chemo & radiation for stage IIIB rectal cancer. The forum has been incredibly helpful for me so I’d like to share my experience and what I learned in hopes it may help someone, particularly the newly diagnosed. I love to do research so bear with me if this is lengthy but I know there are others like me who may find this info useful or interesting.
I learned that for me, while it is good to be hopeful and optimistic about treatment side effects and prognosis, I also need to be extremely pragmatic and realistic. I had optimistically hoped that I would breeze through radiation as my dad did and others have. I feel I would have been better off had I anticipated more of the side effects. When I say anticipate, I don’t mean worry needlessly. I am a true believer that stress and worrying is extremely harmful and useless. I need to be prepared for worst-case scenarios so I can be mentally and emotionally prepared to fight with everything I have. I realized I would rather think, “Gee, that wasn’t as bad as I thought it would be, rather than OMG that was so much worse than I ever imagined.”
When I first introduced myself, I wrote about my dad’s lost battle with metastatic prostate cancer. He passed away about one month before I was diagnosed with cancer. I believe there are no do-overs with cancer. I need to do everything I can to not only beat this, but as importantly, to have an excellent quality of life.
Now that I have finished chemorad, I have about 2 months until surgery. I plan on trying supplemental therapies in the meantime, particularly some of what Tanstaafl has written about (cimetidine), TCM (I looked at your blog, John23) and other alternatives to boost my immune system and keep the cancer at bay until surgery. My dad actually did immunotherapy for his prostate cancer (provenge), so I am a believer in this too and will be exploring other alternatives after surgery before deciding if FOLFOX really is for me.
Details follow on my experience with chemorad.
Chemo: Xeloda oral pill (Capecitabine) vs 5-FU IV infusion (Fluorouracil)
I took Xeloda orally (7 days/week during radiation), but only because I did my own research and insisted to my med onc that it was what I wanted. He originally only offered the 5-FU to me and tried to scare me with increased possibility of permanent side effects from Xeloda for hand foot (h/f) syndrome and neuropathy but I decided that was a chance I was willing to take based on input from this forum and others. I am very happy with my choice as I had none of those side effects. I only had mild intermittent headaches, nausea and stomaches. I learned:
1) The efficacy of Xeloda or 5-FU is the same; many studies have shown this. My father’s onc confirmed (he’s a family friend I also consulted with to make my decision) and my med onc grudgingly admitted it too. Any doc who tells you otherwise may not have read the latest studies or is biased. Why?
2) For docs in the U.S., there may be a financial incentive for 5-FU. They can charge for administering 5-FU whereas for Xeloda, the $ goes to the pharmacy & drug company. My own research showed that this can be a sensitive topic in the U.S. and my dad’s onc confided the same to me speaking as a friend, not as a doc.
3) While studies indicate there may be a higher chance of h/f and neuropathy, there is speculation this may be related to folic acid-enriched foods in the U.S. that may increase toxicity. So, I just avoided those foods while on Xeloda. I also religiously used Udderly Smooth cream. Great stuff.
4) IMO, the convenience of taking pills in the comfort and leisure of my home cannot be underestimated or overvalued. With the 5-FU, I was going to have to have surgery to install a port (delaying treatment I was eager to start), weekly office visits for infusions, & carry a chemo fanny pack for consecutive days that could be a nuisance when showering or sleeping. My dad’s onc said his patients’ experiences confirmed all this. Also not to be underestimated is the psychological benefit of not having additional reminders that I was battling cancer. Popping the pills was just so easy.
5) I asked my dad’s onc point blank what would he choose if he was the patient. His answer was a no brainer- Xeloda.
6) I think the only reason a patient may choose 5-FU over Xeloda is if the pill is too expensive, depending on your insurance or where you live. However, Genentech has a co-pay assistance program that covers some out-of-pocket costs up to an annual maximum. I signed up for the card over the internet. It was quick and easy and my co-pay will only be $20 for each scrip. Be sure to sign up before you fill your scrip.
7) Most of all, you shouldn’t always just do what your doc tells you. Many of you already know this. You must be your own best advocate. Your life, and your overall health, is on the line.
Radiation (28 rad, 5-days a week)
I was so focused on my chemo “dilemma” and what my med onc scared me about, that the radiation side effects really snuck up and did a number on me. My skin is literally black down there and I am a fair-skinned woman. I suffered radiation burns, bleeding, lesions, sores, peeling, painful urination, bowel movements that felt like crapping barbed wire, unpredictable constipation alternating with diarrhea, “accidents” where even an extra set of clothes wasn’t enough. It was demoralizing. I was on a liquid diet for a bit as I was so afraid to go to the bathroom. I lost 12 pounds. I am a petite woman so this was a lot for me.
I used pure aloe vera, aquaphor, calazime & lidocaine for the radiation burns. I don’t know that any of it significantly helped me but that’s what I used for whatever it’s worth. I would have tried others but the side effects started at the end of my 3rd week of radiation and I was depressed at the time so I didn’t have the energy to buy other things midway through. However, my research revealed ointments that may help others (none of these were suggested by my rad onc or nurses so it just goes to show how more helpful our own fellow cancer fighters can be). These include: RX- miaderm, biafine, silver sulfadiazine; non RX- domeboro soaks, desitin, etc. Had I been more prepared in advance instead of letting the burns sneak up on me, I would have asked for scrips from my doctor earlier or had some of these on hand at the ready.
Good luck to all of you newly diagnosed or getting ready for this treatment!