5-FU & Xeloda Extremely Allergic-

[Patience]

Let me hear what you think,

I would gather up my records (lab tests, pathology reports, radiology reports, chemo records, oncologist's records, etc), and get a second and possibly third opinion. Good luck.

[KarenD1]

Dear Alys,
So very sorry to hear what you are going through and concerned. Please let us know how you are doing.
I have colorectal cancer, stage 3B. I had a re-section in July and started the FOLFOX regimen (5-FU/Oxaliplatin/Leukovorin). I had one dose and experienced bad side effects. I was tested for DPD,and it came back POSITIVE. Glad that doctor agreed to do test and I am lucky to be alive. But i heard the same thing as many others - the test is not the "standard of care" - such BS. I have since read a lot about this, and the fact that your doctor continued with treatments is disgusting. He should know about this potential deficiency and the fatality of it. I am at a crossroads now. I will not agree to another treatment, even with a dose reduction. I'm trying to search for alternative treatments that people in my situation have done, but extremely difficult to find anyone who is DPD deficient, since it is so rare.
I'm sending you my best wishes...
K-

[KarenD1]

Doing just that...Contacted Sloan Kettering for 2nd opinion. Hoping they have experience with this and can find a treatment regimen to get me through this.
K-

[StupidAssCancer]

Karen,
What did you end up doing? My oncologist is telling me thee is no back up chemo for rectal cancer, so I'm done with chemo. They had me restart my radiation today with no chemo. I'm surprised at this as well but they claim it will still reduse my chances of a reoccurance in my pelvis!
Let me know what you have found out?
Hugs,
Alys

[dianne052506]

Alys,

Absolutely no experience with what you're dealing with, but you have my absolute sympathy. Miserable symptoms and a doc not willing to test are a bad combination. Hope things start getting better for you soon.

I have 23 radiation treatments left. What do you think about that? From what I understood radiation of colon rectal was not effective without the chemo so I don't understand why now he wants to do it with the chemo?

Truly, no experience, but my understanding was that the chemo enhanced the effectiveness of the radiation, not that the radiation was ineffective if given alone. Also, what about oxaliplatin or irinotecan without Xeloda or 5-FU? I know I've read about it, but don't remember the circumstances. If FOLFOX is part of chemoradiation therapy, then wouldn't oxaliplatin alone with the radiation be of some benefit. Obviously on a different schedule with the radiation, but just a thought.
Hope either your doc tries to work outside of the "standard care" box, or you can find one who does.
Best wishes,
Dianne

[Kathryn in MN]

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.