Your experience with IMRT (radiation) + capecitebine (oral chemo)?

@mnewland99 As if you didn't already have it hard enough, to have a hospital say they would not accept you because you have an HMO, even if you paid cash, is outrageous and deeply disappointing, especially considering what hospital it is. Perhaps you might try M. D. Anderson in Houston. Wishing you all the best.

I would be interested in hearing from people that have gone through chemo (capecitabine)/radiation following Folfirinox treatment that could provide a comparison of side effects. I’ve been advised that it will more tolerable. I understand that the common side effects of capecitabine are mouth sores, diarrhea and in some cases sores on the palms of your hands and soles of your feet. What I’d really be interested in understanding is if brain fog that I experienced while on Folfirinox will return.

@stevm , I'm barely qualified to comment on this thread as I've never had radiation or capecetibine. But I did suffer extreme brain fog and fatigue while on Folfirinox, and then more of the same on my new regimen of Gemcitabine+Abraxane+Cisplatin.

There can be multiple causes and treatments for the brain fog. I just got a prescription for Ritalin from a palliative oncologist on my team, and after a week it seems to be helping fight the focus and fatigue issues at work. Could be worth asking about. Might reduce my caffeine dependence eventually, but not happening yet!

@stevm, I've now had 17 daily (M-F) treatments of radiation + capecitabine, with 11 more to go. I'm an outlier, in that I'm having a worse time with this than I did with FOLFIRINOX (8 cycles) -- ***but*** my capecitabine side effects are fairly mild.

I'm nauseated almost all the time despite alternating generic Zofran and generic Compazine -- that's the big problem, bc I can't do anything or even sit up in bed. Also, I'm very gassy; I have a little diarrhea (only on three days since 11-30-23); I have almost no appetite; and I've continued to lose weight since my Whipple (10-5-23).

I would cautiously say that I have less brain fog with capecitabine than FOLFIRINOX, but I'm not 100% sure. The variable is the anti-nausea med. I felt not-too-foggy from 11-30-23 thru about 12-12-23, when my secondary anti-emetic was generic Phenergan; after I switched to generic Compazine (c. 12-13-23), I felt a bit doped-up, but that's different from chemo brain-fog. (I'm reasonably good at detecting my level of fog bc I've worked mostly as a copy editor, meaning that I'm hyper-aware of how many typos I make, the types of typos I make, and the amt of time I need to digest a news article.)

Also: I'm not having any of the icky capecitabine side effects -- no mouth sores, no hand-foot disorder. So you can probably assume that you'll have an easier time with radiation + capecitabine than you did with FOLFIRINOX. Just be sure to moisturize the affected area twice daily with Eucerin or something similar (but not within the hour before treatment).

jk77. Thank you for the feedback. 17 down and 11 to go go. The end is in sight for you. I finished day 10 of 28 on Friday. So far no real side effects. I have not had mouth sores or hand/foot issues either. Hoping that continues to be the case. I haven't had stomach issues so far. I don't have a desire to eat but I do eat regularly I just don't really enjoy food like I once did. My weight has been steady since starting chemo back in June. I had a distal pancreatectomy and splenectomy prior to chemo. This surgery is less taxing than Whipple. I was concerned about brain fog from the capecitabine as I had terrible brain fog while on the FOLFIRINOX regimen. However, so far it has not been an issue. I'm routing for you as you get close to the end of treatment and for long term success. Enjoy the Holidays and Happy New Year.

Hello fatherjonz,
How did your chemo/radiation go? I hoped you fared well through it.
My husband had wanted me to get the type of insurance that would allow me to go to Mayo Clinic in Arizona, but I declined since it was somewhat expensive and I'm also responsible for paying the medical insurance of my adult children who are still in college.
I have never heard of Capesitebine before so I looked it up and saw that its used for breast, stomach, and other type of cancers, but I didn't see pancreatic cancer listed. It does have a very good success rate of 77+% for the type of cancers that were listed so it has peaked my curiosity especially since it comes from Mayo Clinic; a facility held in high regard for innovative treatments I believe. I'm about to start chemo/radiation treatment for reoccurrence that metastasized to my liver, and also some nodules are seen in my stomach.
Please let me know, if you have that information, why your dr chose Capesitebine. Thank you.

Hi, Thanks for your reply.
I had never heard of Capesitebine before my doctor prescribed it. I had a good experience with it. Little nausea, no diarrhea, and no body aches. The only problem I had was dehydration. So different than my experience with infused chemotherapy. One of the doctors joked with me that it’s “chemo junior”.

Why my oncologist chose Capesitebine…. Apparently it works well with proton radiation. The Capesitebine makes the radiation more effective. Putting it in simplistic terms, the Capesitebine ‘pisses off’ the tumor making it easier for the proton radiation to do its job.

I wish you well with your chemo/radiation. If it’s not too intrusive, where will you be receiving your treatments?

Thanks for all the information.
I just started radiation therapy and taking also taking Capesitebine for 28 days. I’m on my 10th day of the treatment plan and have tolerated well with no side effects. prior to this I did 52 treatments of intervenous chemotherapy.
After I finish the 28th cycles of radiation, I will have three weeks off and get scans to see where I am for surgery.
I’ve noticed the most of you had surgery prior to doing the radiation therapy. My doctors at Mass General team said they had great success with doing radiation prior to pancreatic surgery. I’m hoping I get great results and we’ll have answers by the end of February about surgery. I’m praying that we all do well on our treatment plans to beat this cancer..
I have to mention that I have a rare form of pancreatic cancer call Acinar and is less aggressive than some other forms of pink attic cancer.

Each case is so different depending on metastasis, type, etc. but we all learn from each other here and more importantly, are reminded to be our own advocate!

Hello there!
I've been doing some more research on the Cap. You are so lucky to be at a place where they offer proton radiation. I see it works well on tumors. I have a few lesions (under 1 inch) in my liver, and I read that ablation might work well for that. I've heard the term before on this site, but can't remember where I read it and what the context was. It was actually the Dr. who did my endoscopy that recommended it, so I mentioned it to my oncologist and she is checking with GI dr who did the endoscopy to see if I would be a candidate for it. I imagine that would fix the lesions, however, due to my aggressive type of cancer, I feel sure that I will also need to continue chemo (Cap) indefinitely. I put my chemo start on hold this week since I don't want to start anything (however, I'm also reticent to delay treatment) until I get the opinion from oncologists from a "center of excellence". Best of luck in the new year!