Postby Kathryn in MN » Tue Oct 22, 2013 11:00 pm
Chemo enhances the radiation, but the radiation is effective - chemo or not. You already had quite a bit of 5-FU. Honestly I wouldn't sweat this. The radiation does more for you than the chemo at this point - it is only to boost the radiation a bit. I have a sensitivity to 5-FU and it was found to not be effective against my cancer anyway.
Oxaliplatin (the OX in FOLFOX or XELOX) is not given alone. Irinotecan (the IRI in FOLFIRI or XELERI) can be given alone. Neither of these are given with radiation - too much toxicity and diarrhea issues. So it makes sense for you to do radiation only.
The weight gain as far as I know is not associated with 5-FU. It is associated with steroid use, and most patients get Dexi or Decadron as pre-meds, and some take them for several days after infusion too. Nightsweats are something many patients get - I have had them on every single chemo combo I have taken. The same goes for diarrhea, dizziness, and "faded memory" a.k.a. as chemo brain or chemo fog. Many of the issues you mention affect a lot of patients - with no enzyme deficiency. Did you ever get your test results back? I didn't notice any post about it? Hives, throat tightening and trouble swallowing are usually associated with an allergic reaction to something. It could be the 5-FU or it could be any of the pre-meds. Only elimination testing would give a solid answer. But if I were in your shoes, I would not do the 5-FU anymore just to be safe. I've had trouble with my throat swelling a bit on every single chemo I've had - and along with that, trouble swallowing. But I've only had hives with 5-FU and with Oxaliplatin. I am highly allergic to Oxy, and sensitive to 5-FU.
Chest pain can happen with or w/o the deficiency. 5-FU can cause heart attack or heart problems. That is told to all patients before taking it - you have to sign a form before getting the chemo, and it tells about that. I got awful chest pain and pressure from 5-FU and had my heart tested several times over the years, and it has always been fine.
I wouldn't worry about problems from it now that you've been off so long. I would refuse to get any more of it, no matter how your testing went.