sharpeilover

Kris,
Thanks so much for your quick relply.
She had a series of radiation treatments to the tumor in her neck (that brought her in for the MRI that revealed a tumor there and moany more on her spine for the first time Nov 4- next day found the bile duct mass, ). I do not understand it- she had a cycle of radiation right away- about 4 weeks, 2x/week, just on the neck. They said it was her only window for that treatment, but I do not know why. That radiation really did not do much for the pain. She is getting an MRI on her neck Monday.
I will ask my parents to ask whether she can have more radiation on the bone mets. I hope they also ask about the ablation techniques.

Can bone mets get those seeds which attract the radiation???

Thank YOU ALLLLLLL!

Thanks to you all. This is such a great group for support and info.

I am afraid we are looking for something “medical” that does not exist…
My father is “ordering” from me (the family researcher) info about survivors (well, you know what I mean- exceeders of the dismal prognosis who have managed this disease for a decent period of time, and hopefully with some QOL along the way) who are stage IV, particularly with bone mets. He is also looking for SOMETHING cutting-edge for her to TRY and a palce/doc willing to do that. Meanwhile, I am looking for help staging her unusual presentation (read that piece from Mayo, Marion-TY, very provocative), ideas for the bone mets, managing pain, and always reading about the treatments being used by all with this cancer.
Reason for the obsession with staging: We (and her docs, incl the ones at Sloan Kettering) just find it amazing that she has no actual tumors in any tissues except the bile duct and the bones- my take is that much of her body is successfully fighting this cancer. Yes, the microscopic cancer cells must be floating around, but they are not turning into tumors. However, the presence of bone mets makes the docs unwilling to consider local treatments.
As for more alternative approaches, my parents are very skeptical. If anyone has anything positive to report on those, please share.
There are so many paths to explore, yet between my parents’ willingness and the docs’ willingness, not much really is available.
Looks as if my mom will add the cisplatin to her gemzar chemo next week or the week after. She went shopping for a wig yesterday. The primary tumor is stable in size as as is her tumor and liver levels, high but not rising. Unfortunately the Thurs scan revealed that the bone mets are growing and multiplying. She has the Zometa injection once a month and has pain meds as needed, though they really don’t do that much.
I am only grateful that my mother is still quite well, still doing so much and not in that much pain. She has very few symptoms, probably because the primary tumor is not all that big and the stent is working.
I will read through JeffG’s posts. I am sorry to hear he passed away.
You are giving me much to help me in my own “inquisitive” way of dealing with this sad situation. For that, I am most grateful.
Gob bless you all. may each of you experience some joy this very day.