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Discussion Board Forums Introductions! looking for advice

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  • #99309
    Pennycastle
    Participant

    This reply came from the cholangiocarcinoma caregivers group on FB:

    My husband has had 2 liver resections and was put on Xeloda after the second one and unfortunately still had a reoccurrence 9 months after 2nd resection. He’s a patient at md Anderson and Dr Javle did say Xeloda has shown to help prolong a reoccurrence. My husband had clear margins both surgeries with no lymph node involvement.

    #99308
    Joannemci
    Participant

    I am very happy to hear that. Dr. Diasio runs the DPYD Genetic Testing clinic at Mayo, so I’m happy to hear that his clinic regularly tests for the enzyme or genes prior to starting this family of chemo. It needs to become law — the sooner the better! Thanks for letting me know.

    #99307
    Ktoram
    Participant

    Hi,

    I recently used Xeloda and my Oncologist at Mayo Clinic ordered DPYD gene sequencing test before starting chemo. I had typical side effects but tolerated well.

    Hope this helps.

    #99306
    Joannemci
    Participant

    Hello – I just read your post tonight about your mom starting chemotherapy. My husband had a whipple surgery last year at Oregon Health Sciences University Hospital (The Knight Cancer Institute). Stage 1, no metastasis,  no lymph node involvement, clean margins. He was pronounced “Cancer Free” by his Radiaion oncologist.  He was prescribed capecitabine/Xeloda by his oncologist, but was not tested first for DPD enzyme deficiency. Tragically, he died 3 weeks after starting the chemo, as we later found out that he was DPD enzyme deficient – *2A variant. There is a simple blood test that can be performed — it doesn’t capture genetic deficiencies, but it will capture a majority of the DPD enzyme deficiency, which is ESSENTIAL TO METABOLIZING THE CHEMO! Please see my posting under my name from early this year about my husband’s tragic experience. Although it is somewhat rare, you still must insist on the test.   Cost is about $200 and takes less than a week to get the results back. Read this recent publicity about the subject. My husband’s story is linked halfway down the article. Please let me know if she has the test and just as importantly, your oncologist’s response to your request for test. Thanks and best of luck! Joanne, Portland, Oregon

    https://www.msn.com/en-us/health/health-news/her-cancer-surgery-was-a-success-then-a-genetic-condition-let-a-chemo-drug-ravage-her-body/ar-AAJJvTR?ocid=spartandhp

    #99305
    Kasia
    Participant

    I successfully had Xeloda, 5 sessions over a 2 week period. I tolerated it except for mild foot and hand syndrome. Unfortunately, my cancer reappeared 6 months later and then I had successful SBRT radiation.

    However, about 2 percent of patients (or people in general population)that take Xeloda have an enzyme deficiency that prevents their bodies from processing Xeloda and their bodies, instead of throwing it off, accumulate it within their system causing horrible side effects and possible death. A friend of mine’s husband died a horrible death from the reaction this past year. I had never heard of it nor was I tested for the deficiency, I was just lucky. Because it is rare, it is not common protocol to test for the deficiency which can be done with a several hundred dollar spit test, I don’t think it is a blood test. Their is a very expensive antidote which must be administered within a very short time period. Another issue is that many nurses and doctors are not familiar with the issue and don’t realize the severity of the side effects until it is too late.

    Bottom line after my friend’s husband died and she has made me aware of other cases, my advise is have your mother take the test! I would have had I known. I believe it should be protocol in all cases where This chemo is to be administered.
    Georgia

    #99304
    bglass
    Moderator

    Hi Cogr33,

    Welcome to our community.  It is great to hear that your mother was diagnosed in time to have surgery, and that the operation went well for her.  She is lucky to have an oncology nurse in the family to provide advice.

    A few years ago doctors were divided as to whether there was benefit to having chemotherapy after a clean-margin surgery where there was no spread observed into lymph nodes or elsewhere.  The positive results of the BILCAP clinical trial largely changed this view, and it is now common to prescribe six months of capecitabine (xeloda) after surgery.  BILCAP can be internet-searched if anyone would like to read about this study.

    I had a different treatment after surgery but did have about eighteen weeks of capecitabine, first with gemcitabine then with radiation.  My experience was okay.  I had hand-foot syndrome (a side effect) toward the end that was not fun, but overall the chemo was tolerable.  Your mother’s oncologist will probably suggest ways to delay or minimize side effects, and there is plenty of advice posted on this discussion board (that can be found with the search engine) from other patients who have taken capecitabine.

    The other suggestion is to be sure your mom’s oncologist has a careful surveillance plan in mind to ensure if the cancer does decide to reappear, the recurrence is caught early.  Surveillance will include plans for both scans and blood tests.  Different oncologists approach this differently depending on the patient’s specifics, but looking at what patients have reported on the discussion board, a typical plan might be quarterly scans and bloodwork in the first two years, then less frequently thereafter.  Your mom should know what her surveillance plan will be and should be comfortable with it.

    Please stay in touch.  I hope your mom does well with her chemo and the six months go by quickly and uneventfully, if she elects to pursue the full course of treatment.

    Take care, regards, Mary

    #99303
    Cogr33
    Participant

    Hello,

    My mom was diagnosed with cholangiocarcinoma in august and had a whipple done at the end of September. She was staged a stage 2 due to the size of the tumor however her margins are clear and no lymph node involvement. She had the surgery in nyc and I was very impressed with her care there, however she lives four hours away from there in upstate ny. She is seeing a local oncologist who suggests xeloda for 6 months, she starts it today. Do you think I need to stress a second opinion. They said she would only do gemzar if she cant tolerate the xeloda. I’m just very worried with the high percentage of it coming back and being an oncology nurse I know too much. However my mom is hopeful it works well so she can still travel to florida for two months in the winter like she normally does. She also has had an increase in burping since the surgery and the pancreatic enzymes they were having her take were causing a lot of itching. So she has stopped them and is taking reglan with meals and her burping has improved some. Any input on these things would be helpful. I also told her to ask her local oncologist about taking a daily aspirin as I saw on the fb page a article about that helping with reoccurrence.

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