I do hope I did not come off as critical. I am just wondering how best to use these names. My mother's case does happen to be pretty "hopeless", so knowing more than just the name of the doc and the hospital would help. But I realize we are unique. We have not been offered much after quite a bit of searching. I really feel that having over 5 (my mother now has at least 40) bone mets is a death sentence, with chemo being the only option offered. But she is feeling quite healthy, doing 90 percent of what she wants. It is just so strange to think that she is going to die quite soon. That is why we have some cognitive dissonance- can't SOMETHING more effective still be done as all her functions are still very good???? Most of her body is successfully resisting this evil cancer.
Her first round of gemzar resulted in no side effects except for some fatigue, flat (still high) tumor markers, and a doubling of the mets in her spine from 20 to 40.
Everything else is unchanged. So she is on gem one week then gem-cis the next for 3 months, one month now done. Thankfully no side-effects except fatigue (quite remarkable.) No idea what else is happening, ie with the cancer.
Won't know for a while.
Supposedly, the primary tumor is not any larger than when diagnosed in early Nov 2009, however.
She has never had any symptoms of trouble with the bile duct or liver, etc.
She has had her radiation on one painful tumor in the neck area. The window for radiation on her spinal mets is closed (not sure why). She has Zometa every month with her chemo. That is all she is eligible for.
The big question is: would a doctor anywhere be willing (or legally able) to try anything else on her? Cyberknife is a tumor by tumor thing- she has too many in her spine for that. Local surgery would be a great option, if only she did not have the mets in her spine. She apparently has NO OTHER tumors, not in the liver, no where.
Anyway, we are making sure she is enjoying her life, is comfortable. We just feel so strange "giving up" like this. Our understanding is that a successful result on average with the gemzar is only a few extra months, hopefully side-effect free.
God bless all of you for your inputs, your listening, your advice. And may each of you find some light in your troubles.
Margaret, if you prefer to put this post on another board, feel free.
We even wonder if she really has cholangio- bone mets seem pretty rare, esp if there are no other tumors beside the primary. Or if she has two cancers. Anyway, the biopsies at Sloan-Kettering resulted in "probably cholangio/all same cancer". MRI shows her primary tumor is sitting on the central bile duct. The local doc is "assuming" it is intrahepatic. The only way they got cancer cells was with a needle biopsy- the endoscopic brushing on the inside the central duct failed, and the local doc thought it looked smooth- again not usual way cholangio presents, if accurate. I am now understanding that there are really no absolutely 100% certain diagnoses with cancer. Cell differentiation is the other factor. So that is it.
I will post about the docs she has seen next.