Jjet65
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Hi Gap,
I am sure happy to hear your husband has gotten such good results. The only immunotherapy I am at all familiar with is Durvalumab. If you don’t mind my asking, did genome testing find his tumor(s) had actionable mutations. My terminology may not be correct in the preceding sentence. I am trying to learn about this stuff, especially the genes and cells re malignancy. I ask because I figure I should keep track of other treatments for CC in case my treatment becomes ineffective. Today, with my oncologist and wife, we discussed what we had been looking into, transitioning to Durbalumab. Going to start it with next treatment – Durvalumab and Gemcitabine and drop the Cisplatin. Although the Gem-Cis treatment has been so effective with no serious side effects, it has been knocking down my immune system to where a change is warranted. I have some anxiety about changing from a treatment that is working so well, but this change seems like the best thing to do. As onco said, we can go back to Gem-Cis if need to. If you have any recommendation for a resource to learn about the biology re genes, I would appreciate it. I have been printing out materials from on line searches. I am 78 yr so am used to hard copy and going to the library. I am going to see what our local library has. I need to start with something basic; I never quite “got” biology. My wife understands bio pretty good so I can show her what I have and get help comprehending it. I have to add I like your reason for modification of your message. Please tell your husband I will be rooting for him to continue to have good results with his treatment including lessened side effects. Thank you.
My symptom that led to discovery of the cancer was fluid retention in feet and lower legs. I had no jaundice or elevated bilirubin. The main tumor was blocking the intrahepatic bile duct and compressing the main portal vein. I had several endoscopy procedures to try to clear the bile duct, put a metal stent in the bile duct, and get definitive biopsy samples. The definitive biopsy sample was from bone in the spine. It was adenocarcinoma. There was no surgery. The diagnosis is adenocarcinoma of biliary origin.
Hi Missingmom,
Thanks for replying to my post. As you probably noticed, yours is the only reply, so far at least.
My bilirubin level shortly before chemo began was .5 mg/dl back in late Sep 2021. It was that about 2 1/2 weeks ago also.
Why do you ask about that? I don’t understand the bio and chemistry well so looked up the meaning of that test – glad I did because I thought it concerned a different aspect of the liver function.
Gavin
Thanks for the references and your support. I have Dr. Oh’s but not others. Have printed out all. I watched much of the conference on line; did not attend in person. It’s terrific that the Foundation gets what seems to me top notch brilliant, talented, dedicated experts to preside and/or present at the conference. It is a Godsend for all we patients and the caregivers also. Things like those don’t happen by luck; there has to have been many persons with the Foundation working for at least a few years to bring it to this point. Thanks to all.
John
Hi Gavin,
I became aware of this study from watching the presentation on it at the annual conference – I admit I only watched part of it as I could not understand the many technical/medical matters. I am interested in Durvalumab combined with Gemcitabine and Cisplatin. I have been doing chemo with the latter 2 for stage 4 cholangiocarcinoma for 9 months. It has been very effective. the tumors are greatly reduced and my tumor marker numbers have come down greatly. I feel good and I have minimal side effects from the treatment. I noted in the study that after a number of treatment cycles, the chemo was stopped and only the Durvalumab was continued. My oncologist and I have discussed the trial and possibly using Durvlumab. My understanding is the 2 chemo drugs were stopped because their purpose is to reduce the cancer, and the Durvalumab is to maintain the cancer at the level reached by the chemo. These terms and the explanation are mine based on my recollection of the conversation with my oncologist. I am interested in resources to learn about this and information to help me and my oncologist decide whether to try the chemo/durvalumab combination and how long to treat with all 3 and then stop the chemo.
This is my first day on the discussion board. I am sure glad there is this resource and the Foundation and its website.
John
Hi All,
this is my first post on discussion board/intro. My name is John, I am a patient. Been doing chemo with Gemcitabine and Cisplatin for about 9 months and it has been very effective with minimal side effects. My oncologist and I are looking at combining the new immunotherapy from Topaz-1 trial with the 2 chemo drugs. So I am looking for sources for information for that. I figure to put an entry about that in another part of the board to seek ideas. I am sure glad there is this Foundation, website and discussion board.
John
