March 7, 2018 at 8:19 pm #96707bglassModerator
Welcome to the discussion board, but I am sorry to hear about your husband’s diagnosis. Hopefully the discussion board as well as the resources of the Cholangiocarcinoma Foundation website can support you, your husband and your family as you navigate the path ahead.
A proportion of chemo patients will see their tumors shrink enough to get them to surgery, but I have not seen any data suggesting how often this happens. If you want to search around for medical articles about this, try googling “neoadjuvant” and “downstaging” together with “cholangiocarcinoma.” There are patients who have posted on this board have been able to have surgery after some cycles of chemo, so this definitely can happen.
Each patient’s path is unique, but a typical path involves a series of treatments, with a first-line chemo then a second chemo, and/or enrolling in clinical trials. Treatments are usually continued until they start losing effectiveness, then something new is tried. Patients are encouraged to have genomic (molecular) profiling to see if their tumor has genetic features for which there are targeted treatments. In the U.S., at this time most targeted treatments for cholangiocarcinoma are offered through clinical trials. There is information on this website regarding open trials, or you can look on clinicaltrials.gov, which will include postings for Canada. I imagine there is similar information posted by the Canadian health system. The good news is that the science is moving rapidly for this cancer and there are many more treatment options now than 5-10 years ago.
If the cancer is only in the liver, there are also some local treatment options which might be possible. Here is an article that reviews local treatments for intrahepatic cholangiocarcinoma.
You also asked how it is possible to have such a difficult cancer with no symptoms. This cancer unfortunately lacks an early warning system, and patients can even have no symptoms or just some vague discomfort. The good news is that your husband feels great and is doing well on chemo. Hopefully, gem-cis will produce good results for your husband.
Please keep us posted.
Take care, regards, MaryMarch 7, 2018 at 11:43 am #96706ShortcanuckParticipant
My husband (60) is presently in treatment with chemo. He’s taking gemcitabine and cisplatin. We were told at beginning that it was inoperable because of vein entanglement, but on an off chance, they sent us to a surgeon in Toronto. He confirmed that it was inoperable at that time, but that chemo may reduce it enough to allow for surgery.
Has anyone had surgery after originally being told it was inoperable? Our medical oncologist told us yesterday, that the likelihood of surgery was pretty low.
Hubby continues to look fine, he has virtually no symptoms from the cancer itself and is tolerating the chemo very well.
We are wondering next steps:
– once this chemo is done, what would they do next (assuming scans aren’t worse)
– would he go on another chemo, or are there other protocols?
– how weird is it that he continues to feel so well? Is it a matter of waiting for the other shoe to drop
Any info/advice/support would be appreciated
We are in Ottawa ??
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