March 31, 2022 at 7:21 am #101592GapSpectator
Yes, my husband also had very disappointing genetic testing results due to a poor biopsy sample and limited quantity of it, too. The lab basically came back with nothing. And there was not enough sample to try a second time (the doctor attempted it anyway — good for him). That left us in an odd situation where we are thrilled that the tumor seems to have disappeared entirely after just 3-1/2 cycles of Gem/Cis, but now there isn’t any possibility of getting another sample for genetic testing. Additional update to his health: He also moved from intense activity (as seen on his last PET scan) in two nodules in his lungs and one near his heart to low activity in all. His doctor wanted this next phase to be targeted immunotherapy, but since the genetic testing was a dud for my husband, the doctor is going with ipilimumab and nivolumab starting this morning. Was told yesterday by the doctor that he’s “cautiously optimistic” that my husband will continue with his remarkable progress (his doctor seems quite jazzed by my husband’s response to treatment so far, haha). Considering he has advanced/metastasized chcc-cca, this is giving us a lot of hope and is re-energizing my husband, for sure. Fingers crossed that he tolerates the treatment well and has great, successful results.March 16, 2022 at 12:13 pm #101568CelesteNSpectator
I wish I could be more helpful about providing input about your biopsy, and I am sorry you haven’t had successful ones in the past 🙁
I just wanted to jump in since you said it was your first time posting to the discussion board. My husband has been active in the caregiver support group and he finds it very helpful, its a great source of information for us. I actually signed up to start participating in the patient support group after watching the annual conference this year too but I haven’t attended any meetings yet. If you haven’t tried out the patient support group yet you should try out the next one! Then if you don’t get your question answered here someone might have an idea at the meeting.
Are you going to try another biopsy or is the surgical one the best option at this point?March 6, 2022 at 2:23 pm #101556bglassModerator
Welcome to our community. I hope your medical team can find a path to figuring out if you have any treatable mutations. If your current treatment stops working, there are other treatment approaches your doctors can turn to if the mutation-linked treatments are not yet an answer for you. It sounds from what you describe that you have had good results from your treatment so far. Let’s hope any new growth is minimal and slow, but if not, your doctors will have other treatments to try. I imagine they are already discussing them with you.
I hope you have had the opportunity to look at the wealth of resources for patients posted on the Cholangiocarcinoma Foundation website.
It is wonderful to meet you. There are good medical resources for our cancer in Philadelphia, reflecting on past posts by other patients in your area. (BTW, I was born there, and have fond memories of the city.)
Take care, regards, MaryMarch 4, 2022 at 12:02 pm #101551Thrashm20Spectator
Hi everyone. My name is Megan, and I’m 36 years old and living in the Philadelphia area. I’ve been living with State 4 intrahepatic Cholangiocarcinoma since I was diagnosed in September of 2020 at age 34. I’ve been following CCA.org for a few years, but this is my first time on the Discussion board.
I started off with 12 rounds of the cis/gem combo and I’ve been on just gemcitabine since then. When I was diagnosed I had pretty severe ascites and my cancer had spread to my lymph nodes, gallbladder, adrenals, and lungs. I’ve been stable for about a year now and my cancer is back to being primarily in my liver.
Has anyone else had issues with getting good biopsy samples for testing? My first two biopsies at my previous hospital did not yield a large enough sample for testing, and my last one had enough tissue but a lot of it was dead cells (which is great overall but not for genetic testing). Through a liquid biopsy they found that I had a BRCA2 mutation but we’re still wondering if I could have any additional, more “helpful” mutations. My doctor floated an option to have a laparoscopic surgical biopsy to ensure that we get a good sample, but I’d have to miss at least 3-4 chemo treatments and we weren’t willing to take that chance at the time. But now I’m starting to show some signs of regrowth, so it might be time to revisit biopsy options again.
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