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

I just finished 25 treatments of this combination. It was easier than any of the other chemo only regimes. I am still in the stage of having residual symptoms ( it’s been 5 days since my last treatment). Primary side effect has been tiredness. Rare diarrhea, occasional mild nausea. Meds help with both. Daily they should be checking how you are doing and can offer tips to deal with issues, or refer to dr if you have concerns. You can do this!

I am also starting this same regimen on December 11. Just completed 12 cycles of FOLFOX. Came through relatively unscathed. Neuropathy seems to be the only lingering side effect. Scans are clean and CA-19 numbers have been consistently under 10 since the start of chemo. Tumor was removed prior to treatment. Had a distal pancreatectomy and splenectomy. Would be curious to know if chemo/radiation will make the neuropathy worse.

Thank you so much for posting. I know I can't assume that my experience will be like yours, but nonetheless it's helpful to hear from someone who has been through this.

I wish you all the best -- I hope you have great results from this, and many years of good health. Thanks again.

I developed mild peripheral neuropathy in mid-Oct., which was about 2.5 mos. after my final (8th) infusion of FOLFIRINOX and about 2 weeks after my Whipple.

I'll let you know whether this combo affects my p.n. Best wishes.

Thanks.
My original protocol was for 8 cycles of chemo but since I did so well through 8 they decided to push to 12. PN definitely worsened with each additional cycle. Hoping that it dissipates over time. Wishing you the best as well.

Hello stevm,
I wish you luck in your treatment. My case was similar to yours as I was a distal, stage 2, 12 rounds of chemo; marker at 6. My surgeon thought I would go on the oral chemo, but my oncologist looked shocked when I told her. She said the usual mantra “your margins are clear and your antigen low” and said no reason for it. Now I understand that may not mean much right after chemo. My genetics like most is the KRAS g12-d. Dr never explained what that meant and only after chemo did I look it up and then understand why longevity can be a challenge with this disease without the right treatment. I take it you were a stage 2? May I ask which facility you received your care? I applaud your drs for taking that extra step of insurance in fighting this disease and wish you well.

Marie,
I wish you luck as well. This is a challenging cancer. I was diagnosed at Stage 3. My biopsy pre surgery was inconclusive as they could not get a good sample. I agreed to have the tumor removed as the surgeon assured me that it was in a good spot for removal and he was 75% confident that it was non cancerous. The morning after surgery he stopped by quickly to say that the margins were clean. That left me feeling hopeful until 5 days later when I received the pathology report. I was shocked to learn that I was Stage 3. I had minimal symptoms leading up to my diagnosis. I very slight feeling on my left side that I attributed to a muscle pull. My genetics indicated KRAS as well. I'm being treated at Mass General Boston. As much as I'm not looking forward to taking the 5FU with radiation, I figured I'm all in at this point. I've been reassured that it won't be as bad as 12 cycles of Folfirinox. The Oxaliplatin is torture. They eliminated it for the last two cycles as my neuropathy had worsened. Hoping that it's not permanent. Again, all the best to you in your journey. Steve

Thanks for asking the question…
Monday I will begin three weeks of daily radiation and Capesitebine at Mayo-Arizona. I’ve read the literature, talked with my oncologist and a oncology pharmacist.

I am fearful. My months with chemotherapy infusions were dreadful. Beat the heck out of me. Two months after the last infusion I am finally beginning to feel myself. The quality of my life returning.

I’d like to hear from folks who have experience with the combination. Side effects? Length or number of treatments?

Thanks

Hello @fatherjonz and welcome to the Pancreatic Cancer support group on Mayo Connect. I'm glad that you found this forum. Connect is a great place to find encouragement and support. Your feeling of fear is certainly understandable, especially given your prior experience with chemo.

As you said, "My months with chemotherapy infusions were dreadful. Beat the heck out of me," I'm guessing that you have been on this cancer journey for a while now.

How long ago were you diagnosed?

September 1, 2022 a spot was noticed on my pancreas… antigen about 550. My two family practice doctors suggested “false positive “, best to wait a few months and retest.
January 2023 retest antigen 900. MRI shows tumor. February biopsies taken. February 22, 2023 I was given cancer diagnosis. February 24, 2023 was my first visit to the Mayo Clinic-Phoenix to begin treatment.