December 23, 2018 at 1:03 pm #97932
Her oncologist is going to try to get compassion use for the PARP inhibitor as he strongly believes in it unlocking some benefit for Kathy, but I’m not sure which inhibitor or if we don’t get it how much it would cost to try it. I’ll update as we get more info.
BillyDecember 23, 2018 at 12:03 pm #97931bglassModerator
My layman’s impression is that trials are pairing immunotherapy drugs with standard cancer treatments to test hypotheses that the combination boosts effectiveness. My understanding from what you described is that Kathy has a genetic mutation – ATM – that may respond to a PARP inhibitor, and that it is the immunotherapy side of the combination that might be too risky. I wonder if there are trials with PARP inhibitor drugs that do not involve immunotherapy and do not interfere with her other potential treatment needs such as radiation. Or is it possible to simply have the PARP inhibitor prescribed as part of a chemo treatment, insurance willing or with some form of compassionate access arrangement?
Best wishes that a sound treatment option emerges quickly. You are doing a great job leaving no stone unturned to identify next steps.
Regards, MaryDecember 23, 2018 at 10:53 am #97930
We heard back from Kathy’s oncologist- unfortunately after he spoke with the Dr in charge of the clinical trial it was decided that Kathy cant participate in it due to her ulcerative colitis. I fear this will keep her out of any potential immunotherapy trials as they dont want to risk worsening the colitis although I have read anecdotal stories of people with UC getting benefit from immunotherapy in other cancers (such as melanoma) without worsening the UC. I wonder if any other cholangio pts have UC and were able to participate in these type of trials.December 18, 2018 at 6:55 pm #97912
Thanks for your reply to this and the other thread Mary,
I’ve been searching clinical trials.gov and in addition to this trial (which is done at sloan and mt sinai, systems kathy knows well), I see there is one for niraparib at University of Florida. That one includes multiple genetic defects (including ATM) but excludes BRCA pts. Unfortunately for Kathy, we learned about her skull metastasis so I’m not sure any of these would allow concurrent radiation. I was hoping Kathy’s oncologist at sloan would sidebar/consult Dr. Aboualfa or Dr Harding at MSKCC as it seems they head a lot of Sloan’s trials but no luck so far. I’m debating asking them directly for a second opinion but being within the same health system I dont want to ruffle any feathers. We also want something to get started that can happen with the radiation since there are still other cancer cells lurking in her.December 18, 2018 at 6:48 pm #97911bglassModerator
There is another board member -Victoria “SpokaneMom” – who has been posting this week about possible treatment with a PARP inhibitor drug.
The trial you mention combines an immunotherapy drug with a PARP inhibitor. The PARP inhibitor drugs show effectiveness for patients with BRCA or ATM genetic defects.
Victoria mentioned, in addition to finding a trial, the option of having a PARP inhibitor added to a standard cholangiocarcinoma chemo regimen. This would likely entail finding a doctor who will go for this, and either getting insurance to pay or finding a patient access program through a pharma company.
I don’t know about ATM, but for BRCA mutations in cholangiocarcinoma, there is a small group of doctors who seem involved in research and trials. If you can find medical journal article references, this might give clues about which medical institutions and doctors have experience with ATM. It may also be helpful to get on the phone with clinical trial points of contact.
I wish I had better info on this for you. Please let us know what you find out, and best wishes that a good treatment plan comes together quickly for Kathy.
Regards, MaryDecember 17, 2018 at 4:19 pm #97902
Unfortunately we got news today that Kathy’s cancer has recurred- her left supraclavicular node that was first noticed in October was biopsied last week and came back as positive for cholangio. I will be updating her story under her main thread in a little “36 yr old with cc update” but I wanted to know if anyone else has heard of these clinical trial drugs. Her onc thinks she may be a candidate for a CT at Sloan trying out these two drugs in combination (avelumab and talazoparib) because she has the ATM mutation in all her body cells. Has anyone used these drugs or know of anyone who has? Its a phase 2 trial targeting pts with BRCA or ATM mutations.
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