Re: Treatment Centers/Physicians
In Nov 2009, at age 76, my mother, a generally healthy person, was found to have about 20 blastic tumors up and down her spine during an MRI to see why her neck was hurting her so badly.
More imaging resulted in the finding of a mass on her central bile duct and gall bladder.
Her local internist referred her locally to Dr Frederick M. Weeks of Vero Beach, FL.
An endoscopic brushing inside the bile duct and a needle biopsy if a bone tumor failed in a local facility.
My mother was able to get an appointment 4 weeks later to see Dr Manish Shah in the GI Dept of Sloan-Kettering in NYC, at the recommendation of Dr Weeks who knew that this was a cancer beyond his expertise, usually incurable and virtually untreatable. The questions were: is this gall bladder/ bile duct cancer, and is the cancer the same in the bones? Based on the answers, we would get a treatment plan from Dr Shah.
My mother had two needle biopsies (one around the gall bladder and ducts and one in the spine) in two depts a week apart two weeks after her initial consultation- Sloan Kettering is a very busy place and it is very hard to get appointments. The conclusion was "probably" cholangiocarcinoma, and bone mets were "likely" from the same cancer.
Dr Shah agreed with my mother's desire to be treated in Vero Beach while living at home. He came up with a treatment plan and forwarded it to Dr Weeks, who is now administering chemo. She started her chemo (finally!) on Dec 24, 2009.
He refused to offer any direction with changes in her diet or additional supplements to enhance her chances of getting the tumors and supporting her immune system. "Don't make any big changes. Just be healthy." Hard for us all to hear as we were reading the Anti-Cancer Diet book, and take numerous supplements ourselves...
There is no continued conversation between the two doctors. Both are very pessimistic ("realistic", in their eyes). They just see it as a matter of time, and even questioned whether she should go on the second more toxic chemo (gem-cis).
It now now four months since her diagnosis.
She is feeling quite normal and has been on the more toxic regimen for about a month.
We are grateful for the good quality of her life. But it is as if she really is not that sick and never has been. But no other treatments seem to be available due to the multiplying bone mets. All the doctors say is that there is nothing else they can do, and that we need to get a grip.
I and my father have TORN UP THE INTERNET to find more treatments. We even asked if Dr Shah if she should add something like an anti-angiogenetic or some other third chemical (directed to a specific pathway of cancer) to her chemo cocktail. I sent him a long list based on cc trials and pancreatic cancer treatments, which seem to be the basis for many cholangio therapies. He just wrote them off, saying that they cause too many side-effects. I did not understand that- I thought targeted therapies caused fewer side-effects than chemo.
My father is horrified at all this. But it is very hard to believe she is dying. We feel bad just "giving up".
Hope this helps others in some way.
Take care, everyone.