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  • in reply to: looking for advice #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

    in reply to: New here! #97698
    Kasia
    Participant

    Hi, sorry to hear about your husbands diagnosis.  I was diagnosised a year ago with a similar diagnosis as your husband.  Mine was intrahepatic (in the liver) pressing against the inferior vena cava.  At first we thought I only had one the one tumor but further screening showed I had the one against the vena cava and two other smaller tumors. (3).   I underwent chemo to reduce the size of the major tumor and ended up only doing 3 chemo sessions because I got a bacterial infection.  I recovered from that and they decided to go ahead with the surgery in February.  My major tumor was removed as were the other two and 50 percent of my liver. Margins and pathology good no lymph node invasion. Surgical procedure was:   Gall bladder removed, extended left hepatictomy including a resection of the middle hepatic vein, cholecystectomy, segment VII liver resection, portal lymphadenectomy, intraoperative ultrasound, caval resection , caudate lobe resection, caval reconstruction.  Following recovery from surgery in April I started adjunct chemo taking Capecitabine (Xeloda) in pill form for a regime of 2 weeks on one week off for a total of 8 sessions.  I am currently in my final session and then after one month I will have my  MRI scan to see if there are no reoccurrences.  I feel very lucky and hopeful that there will be no reoccurrences.  Good luck and I hope this description of my treatment helps.  I recommend the surgery.  I live in Portland, Oregon and my surgeon was Dr. Kevin Billingsley at the Oregon Health Science University.

    in reply to: From India #97255
    Kasia
    Participant

    I am sorry to hear about your father.  I am a Cholangiocarcinoma patient and had surgery in February and am currently on adjunct chemo.  My advise is to get him to a cancer research hospital as soon as possible and the advise of an oncologist who is familiar with his specific cancer.  It can make the difference between life and death as this is a rare cancer and requires an experienced oncologist and surgeon.  Good luck.

    in reply to: Gastric obstructions more than one year after surgery? #97187
    Kasia
    Participant

    Have they done an MRI or PET  scan?  Last November, 2017, I was diagnosed with Cholangiocarcinoma and they caught it early while I was in the process of being cleared for knee surgery.  The CT scan, which was not liver specific, showed one tumor and a biopsy said Bile Duct cancer.  We were ready to do an endoscopy and then laprascopic surgery exploratory.  Additionally, the tumor was up against the veina cava vein and they weren’t sure they could do the surgery because of the location.  Fortunately, I got a second opinion and the surgeon did not like the original CT scan and ordered another liver specific which then showed an additional tumor.  Surgery was then off the table.  I then got a third opinion and the Doctor said we should do chemo and if the tumors shrank he would do the surgery.  I was sent to an oncologist, the tumors shrank and I was scheduled for surgery.  They then did an MRI the week prior to surgery which showed a third small tumor.

    The 3rd opinion doctor proceeded with the surgery, 1/2 of the liver was removed margins clear and no lymph node involvement, pathology great.  It has been 5 months since surgery, blood work great, feel good and new MRI showed no new tumors etc.  However, I am now taking Xeloda oral chemo as a mop up for what might be hanging out in my system and not detectable by scans.  My point after my rambling, is that technology for scans does not have the capability to see minute particles so following a successful surgery there still might be something there undetected. Additionally, not all scans are the same.  I believe that an MRI gives the best definition and would recommend that your Mom have one.

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