Harrypenny
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Hi Mary
Yes, I’ve used the CCF specialist map quite a bit. My onocologist is integrative and has had cholangio patients prior to me.
He’s integrative so a bit different from conventional in that the immune system is protected and stimulated. That isn’t to say that the program was too much for my body to manage. My platelets have recovered. It’s taken nearly 6weeks for them to get above 100 and my blood counts are still low but there is progress. I’m anxious to get back to treatment however.All of the surgeons and conventional oncologists that I am consulting with actually came as recommendations from cholangio patients.
Dr Fung and Dr Liao from Chicago University; Dr. He with John Hopkins; Dr. Jarnagan at MSKCC and Dr. Kato with Columbia in NYC.I have a face to face consult with Fung/Liao on 12/23 and am working to schedule with the other surgeons. I’m not yet convinced that I’m not a surgical candidate so we are getting as many second opinions as possible.
If surgery isn’t yet possible, I’m pushing for alternative treatments. Has anyone experienced or heard of the Williams Cancer Institute?
I’m trying to find patients who have done his program. Dr Williams is an interventional radiologist who performs intra-tumoral immunology with a 65% complete response rate. He only performs the treatment in Mexico given one of the agents he uses isn’t FDA approved in the US. I had a consult with him which was very knowledgeable but I’m needing additional information from a patient before I could make a decision.I have been reading these posts for a while and thought to introduce myself. I’m Caroline. 58 years old and diagnosed with ICC in April 2019. I have a large mass in the center of my liver with two lymph nodes – one in abdomen and one in my chest. I have done 16 weeks of IPT chemo (low dose metronomic chemo) with good results after the first 4-weeks. After that, I got thromobocytopenia and had to start/stop/pause both the second and third 4-week programs. My Onc has never had a patient that couldn’t do low dose and their platelets not recover. Currently, my CA19-9 is increasing. I’m off chemo trying to find a surgeon who will say yes to surgery but have had no success with 2 so far. Y-90 was recommended by one but the other (whom I trust more) said the benefit of Y90 would not outweigh the risk. I’m not a surgical candidate until I can get the disease under control. I was showing improvement in September but a break in the chemo and my numbers started to rise. This last round not only had to be stopped, it really didn’t have any effect Gem/Cis/Abraxane. Its really disconcerting when I’m told I need to get back into chemo and I’m not sure if my bone marrow will take it – low dose or conventional.
Has anyone had a similar situation? I believe the diagnosis but refuse to believe the prognosis. There are so many cholangiocarcinoma survivors. I simply refuse to accept that this cancer is going to win.
