Hello everyone – experience with Xeloda?
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Ali,
My husband was diagnosed with Stage 3B perihilar cc in December. They were hoping he was stage 1, but during his 16 hour surgery on Dec 1, they found that in addition to the tumor in his common bile duct, there were cancer cells within the liver ducts and down by the pancreas. His gallbladder and one local lymph node also tested positive. He had his common bile duct, gallbladder, and left lobe of his liver removed, along with part of the right lobe but they never got clear margins either.They are recommending gemzar and cisplatin along with radiation. They will do at least 2 rounds of chemo before the radiation though.
I wonder why the difference in recommendations. We did just get approval from our insurance to get his tumor genetically tested through FoundationOne. Have they done that for your mom already?
Best wishes,
VictoriaCatherine, just want to send out the best wishes for your Mom’s upcoming scan! Crossing everything I own even my eyes!
Ali,
With going through both the radiation and Xeloda, she was VERY fatigued for 6 weeks. She was at times frustrated that we were past a month and she still was had the physical and mental fatigue that I think only cancer patients can understand. However, that was in Nov 2014 and since then, she just goes for period CT/PET scans and to get her port flushed. We have another scan coming up, but so far she has been showing no evidence of disease.
Best wishes,
CatherineDear Ali, at the top of the page is a search engine and if you type in Xeloda many posts should appear on that subject. I am thinking you would get some good responses about effects and effectiveness. Best of luck.
Hi Catherine,
Thank you very much for your response. My mother just started on Xeloda today and I’ll report back on her progress and any side effects.
Cheers
Ali
Hi Ali,
Welcome. to our group. I’m very sorry to hear about your mother’s diagnosis, but very happy you found us. My mother’s treatment was a bit different, but end result was great and I hope the same for your mother.
After an unsuccessful surgery attempt (opened her up, looked at location of her one ICC tumor, and closed her back up), she went through 3 cycles of GEM/CIS. However, once that was completed, she went through Y-90 radiation treatments 2 times. The second time, they gave her xeloda two weeks before and after the treatment. Her IR doctor said the xeloda would help with the effectiveness of the radiation, and for us it did the trick. Mom has had clean scans for over 2 years since the last treatment. I’m not sure why it was xeloda rather than Gem/Cis when combining with radiation, but for us it worked. And, it was much easier to take a pill versus the infusions.
Keep in touch and Happy Holidays too!
Catherine
Hi there,
I think it’s so fantastic that there is a strong support group for such a rare and brutal disease. My 62-year-old mother was diagnosed with type 3b perihilar cholangiocarcinoma in Calgary, Canada in October. The tumor was fortunately detected fairly early through a CT scan. In mid-November, she underwent a six-hour surgery by the talented Dr. Elijah Dixon and had her left side of her liver removed (which had already shrunk because of the golf ball-sized tumour constriction in the bile duct) along with her gallbladder and left portal vein branch. Unfortunately the resection margin came back as R1 (microscopic cancer cells remain).After discussing with the oncologist and radiation oncologist at Tom Baker Cancer Centre, they have decided that her best chances would come from a combination of radiation and chemotherapy. They have recommended that she takes Xeloda (capecitabine). Has anyone here had experience with this chemotherapy treatment? Side effects or alternative recommendations? My understanding from this board is that most CC treatments involve gembacitine and cisplatin.
Thank you and Happy Holidays
Ali
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