March 8, 2010 at 6:11 pm #35001cherbourgParticipant
Here’s a link regarding bone mets that may be helpful to you.
I’m sorry you had to find us but glad you did.
Let us know how we can help!
Hugs to you and your family!
PamMarch 8, 2010 at 5:22 pm #35000shonnyMember
Hi my sister has bone mets hers is in her thigh 16 x 12 they also will not operate she has only in her liver and thigh now gone to her spine. only given her chemo which has ceased and one lot of ray on her hip willnot do the spine. i am like you no one will give answers to questions of why cant you do this or that. my sister is 30 and has two children aged 2 and 4 they have told us there is nothing else they can do. i read this site each day to hope there is a new treatment. please let me know what they are doing for you mum.January 24, 2010 at 6:31 pm #34999
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!January 24, 2010 at 6:27 pm #34998
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!January 24, 2010 at 6:27 pm #34997mlepp0416Participant
My husband Tom has a inoperable tumor, no met to anywhere else in his body. His original tumor was resected in June 2008 and he had a new occurance of a 2.5 cm tumor in the remaining right biliary tree. “They” have given him 6 months. We are now at 2 months out and he is receiving radiation. His tumor markers have gone from 466 down to 336 and his bilirubin level has gone from 24.7 down to 22.7 at the last blood work.
No one has an expiration date stamped on the bottom of their feet or on their butt.
I too am surprised that they are not doing radiation for your Mom. Without radiation Tom’s bilirubin level and his tumor markers would have continued to climb. Because those numbers are going down, we know that the radiation is shrinking the tumor and bile is now getting into his intestines (that’s a good thing!).
We are not giving up, we are fighting this and once the tumor shrinks and they can get a stent into the liver bile duct, then Tom will start on Chemo.
Good luck in your research for your mom, and as always, ask questions, seek second and third opinoins and never take no for an answer!
Go with God and KEEP KICKIN’ THAT cancer.
MargaretJanuary 24, 2010 at 6:01 pm #34996devoncatParticipant
Is there a reason they are not considering radiation for the mets? I am always suprised when doctors just leave them. We know they grown. And they usually cause pain so I am at a loss as to why they dont get zapped more.
KrisJanuary 24, 2010 at 5:55 pm #34995
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.January 24, 2010 at 2:48 am #34994gavinModerator
I don’t know if link this may help or not, but here it is anyway –
I think that Jeff tried Zometa, but if you want to know more then perhaps you could use the search function here.
My best wishes to you,
GavinJanuary 24, 2010 at 12:24 am #34993marionsModerator
Jeff did have radiation but, bone mets became one of his major problem. I am enclosing a few links for your perusal.
Good luck and best wishes,
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=131January 23, 2010 at 10:08 pm #34992lainyParticipant
I had mentioned JeffG above and I know he also had bone mets to his spine. If you would use the search engine and look up JeffG he has some valuable information. He was a menor to a lot of us and we loved him dearly. IOn fact if anyone wanted to ever look Jeff up he had so much good information.January 23, 2010 at 9:41 pm #34991devoncatParticipant
Sorry I gave you wrong infor. I was sure it was Kristen. JeffG had them in his ribs and I think he radiation. Unfortunately, he passed recently so you will have to search for his posts.
KrisJanuary 23, 2010 at 6:13 pm #34990gavinModerator
Welcome to the site, although I am sorry that you have to be here. I hope you keep coming back as you will get a load of support and help from us all. I can’t help you with your specific questions, but I just wanted to join in with the others in welcoming you here.
My best wishes to you and your family.
GavinJanuary 23, 2010 at 5:54 pm #34989
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??January 23, 2010 at 5:07 pm #34988lalupesParticipant
Welcome, Sharpeilover. I’m sorry I can’t answer your question – but I wanted to welcome you. I hope I’ll be able to help with other questions you may have, though. Keep coming on & asking them!!
JuliaJanuary 23, 2010 at 2:03 pm #34987lainyParticipant
Hello and WELCOME to our Family. We have a search link at the top of the page and if you type in bone mets I am sure something will come up. If that doesn’t work try JeffG I am almost sure he had bone mets and I know that with what ever came along he was game to try new things. Good luck and sorry you had to join our group.
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