November 15, 2018 at 7:24 am #97794MaryPParticipant
As always, very much appreciate such a quick and detailed reply on my query.
Thank you. Our oncologist has asked us to visit back in a couple of weeks, so mother can regain a bit more strength and thereafter he will evaluate her condition and potential start her on the chemo pill. He hasn’t yet told us if it will be Xeloda or something else. Will check with him on the rationale to discontinue her past chemo; perhaps it is to do with her tolerance and the balance with quality of life under chemo.
Thanks for the links to the Clinical Trials. Will reach out to some of the nearest hospitals listed there-in for further details.
JohnyNovember 14, 2018 at 9:13 am #97787bglassModerator
I am sorry to hear that your mother is feeling weak while having chemo. I am not a doctor so cannot dispense medical advice, but can make some observations from what I know of patient experiences.
With cholangiocarcinoma, while we all hope for shrinkage of the tumors while on chemo, stable disease (no growth or spreading) is a positive result as long as the chemo itself is tolerated by the patient. If there is progression of the cancer or if the side effects cannot be managed in a way that preserves quality of life for the patient, then doctors may recommend a change in treatment.
Similar to what you describe, we have had some reports on the discussion board of older patients whose doctors recommended switching to a single agent chemo, in order to continue chemo but with fewer side effects. One chemo in pill form that may be recommended for cholangiocarcinoma is capecitabine (xeloda). Is that the chemo your mother’s doctor discussed with her? An advantage of chemo in pill form is the patient can receive chemo at home without the exertion that comes from having to go to a hospital or infusion center.
In the U.S., alternatives to chemo for cholangiocarcinoma that has spread outside the liver tend to involve clinical trials, where promising newer treatments are being tried with patients. You could consider looking at clinicaltrials.gov which has information on trials worldwide to see if there are any trials for which your mother might qualify in your area. You can search for “cholangiocarcinoma,” “liver cancer,” “biliary cancer,” and “solid tumor.”
I hope your mother feels better and that her treatment path going forward keeps the cancer at bay. Your support and concern for her health and well-being are so valuable and comforting for your mother as she pursues treatment.
Adding a link for India’s clinical trials registry website:
When you go to this site, if it asks whether to block or allow a pop-up, pick “block.” Use the keyword search function on the left-hand side to hunt for trials.
November 14, 2018 at 4:34 am #97786MaryPParticipant
- This reply was modified 1 month ago by bglass. Reason: Added information
Had posted an introduction a few weeks back around my mother’s diagnosis with cca (supposedly unresectable with 9cm secondary lesion in liver) with some spread to her lungs and L4/L5 & Illiac; though the latter 3 areas are still largely asymptomatic.
Today we took her to her 5th chemo session (Gem/Oxy, 3rd cycle start, weaker but she’s been Bravely fighting it out until now @76 yrs of age) and her oncologist suggested we redo the CA 19 marker test since an ultrasound showed no visible change on her liver. The CA19 result hasn’t budged from her pre-chemo report (still @14,000).
Oncologist has suggested not to continue her current chemo sessions and switch to tablets (not sure if this is a placebo route…)
Are there any alternatives anyone is aware of in similar cases when chemo becomes ineffective? Oncologist had expected some improvement from the chemo medicines. Also any references of oncologists in India for a alternate opinion ?
Many thanks for any inputs..
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