June 21, 2017 at 9:24 am #95190gavinModerator
Keeping my fingers crossed here as well for your MIL, hope it all goes well. Please let us know how things go.
GavinJune 20, 2017 at 10:31 pm #95189marionsModerator
hopeseeker……you are welcome. Fingers crossed for everything to work out.
MarionJune 20, 2017 at 10:27 pm #95188hopeseekerParticipant
Thank you for your reply and great info. I will pass it on to my husband so he can talk to her oncologist. She does not have insurance of any kind, but is getting help through a foundation (not sure which one) and Medicaid.
She is so young to be fighting this and we know she can fight hard if she had the right tools and help!June 20, 2017 at 7:06 pm #95187marionsModerator
hopeseeker..there is no curative drug for our cancer, hence at one point drugs resistance will occur, which means the tumor will grow again or new nodules may pop up.
A second line of treatment will be considered, consisting of either chemotherapy or radiation therapy or a targeted drug that directly kill tumor cells.
Traditional cytotoxic chemotherapies usually kill rapidly dividing cells in the body by interfering with cell division. No additional testing is needed in order to receive a second line chemotherapy.
This is different for targeted agents, which can either block or turn off chemical signals to block or turn off signals so that the cancer cells no longer can grow and divide.
Targeted agents can change the proteins within the cancer cells causing cell death or stop new blood vessels from feeding the cancer cells.
Targeted agents also can trigger the immune system to kill cancer cells.
Cholangiocarcinoma does not have an approved targeted agent, hence in order to possibly benefit from a targeted agent patients must enroll in a clinical trial.
However, there is one exception. Only recently the FAD approved Keytruda for patients with unresectable or metastatic solid tumors that have progressed following prior treatment and who have no satisfactory alternative treatment.
These patients must have been identified with a specific biomarker referred to as microsatellite instability-high (MSI-H) or mismatch repair deficient (dMMR). We don’t know the rate of occurrence of this biomarker in our patient group, but it’s estimated that approximately 5% of our patients have this specific biomarker.
All patients should have comprehensive DNA/Molecur testing, but as far as I know, testing for microsatellite instability-high (MSI-H) or mismatch repair deficient (dMMR) is not automatically included, hence it has to be requested by the physician.
Personally I am most familiar with Foundation One, but there are other labs as well.
The tissue biopsy must be adequate in size for testing. Most institutions preserve tissue, but some patients must undergo an additional biopsy. In any case, the tissue must have been retrieved within a one year time span.
MarionJune 20, 2017 at 1:10 pm #13463hopeseekerParticipant
My MIL is 59 years old and diagnosed at the end of March with stage 4 unresectable stage 4 cholangiocarcinoma with mets to liver, lymph nodes along with pancreas and gallbladder involvement). She began chemo the end of April. She is on 30mg of morphine every 8 hours with breakthrough pain meds to take in between that when needed.
She was recently was hospitalized and had to have one of her 2 stents cleaned out (the other one will be cleaned out at a different hospital where they have special equipment for it) She was also suffering from a stomach ulcer which they have give on her meds for. They also put her on blood thinners for a few weeks.
She has a new oncologist at a new hospital closer to where she is staying with her sister. The original one she was going to was 4 hours away and that’s a lot of driving for chemo and appointments. She and her sister like the new oncologist and he is keeping her on the same chemo schedule of Eloxatin (oxaliplatin) 2 weeks on and 1 week off. CT scans showed shrinkage of the liver tumor which was very good news to hear! With those results the oncologist felt the chemo was working.
The oncologist is calling for a port to be put in for the chemo treatments and has said she will be on chemo for the rest of her life and that since the lymph nodes, pancreas and gallbladder are involved she cannot have surgery. They have given her 6-9 with chemo but she seems to be doing so well along with the tumor shrinking that I feel she will far out live that diagnosis.
Wont the chemo continue to stink the tumors and she will be able to live much longer or does the chemo shrink the tumor temporarily and then it grows again? My husband and I are so new to this cancer diagnosis, and we are just searching for answers and help. I have more time for research then he does so I often am the one looking for the info.
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