Hi _ I am new. My mom has stage IV-B cancer, mets only in bones.

Margaret,
My understanding is that presence of mets outside primary precludes use of any localized treatment to primary, incl radiation. Not sure if there is any flexibility here. We really need to deal with the bone mets as well, as they are growing and multiplying now.
I have read your posts. I am feeling your love for Tom and will be following you and praying for you both. You are an inspiration, for sure.
Thank you for your help!

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.

Thank you all for your most responsive welcome.
She was diagnosed Nov 4, 2009, confirmed at SK-NYC in mid Dec and had round 1 of chemo starting Dec 24.
Mom has already had radiation on the neck spine mets- they say there was a small window to do that, but I do not understand why, ie it cannot be done again.
The first round of gemcit resulted in no growth of primary but the spjnal mets are bigger and multiplying.
Q: is it unusual with cholangiocarcinoma to have extensive bone mets but no other tumors except the primary??? Sloan-Kettering redid the scans in December and confirmed that, and that cancer in bones is from the cholangiocarcinoma.
She is being refused many treatments (Local-ish, surgery) because of the met’n to bones, BUT they have found NO OTHER tumors between the bile duct and the bones, not liver, not pancreas, not intestine, not lung, not lymph node, not blood.
Is this an unusual presentation??
Docs say need to add cisplatin now- we are aware that this is a big step, QOL-wise, so thinking it through, trying for other options.
Has anyone on this board seen this presentation before???
MANY thanks- you are all so fantastic. Take care.
p.s. we are looking for ablation type treatments for the bone mets- though not sure where they do those…. anyone have info on that??