[dw58]

Continuing bone lesions-decreased response to therapies.

by dw58 on Thu Feb 09, 2012 9:38 pm

I was diagnosed with IGA multiple myeloma back in 2008 at age 49. At the time I was asymtomatic, execpt for a plasmacytoma that formed in my skull, which was removed---this is what led to my diagnosis. I started treatment on rev. These four years I've been on all of the novel therapies which have kept me on or near remission. During the past two years I 've had a drastic increase in lytic lesions. To the point of having lesions in just about every bone and vertebrae in my body. This has continued to occur regadless of the type of therapy I'm using. Additionally, my effective time on the various therapies have decreased or have become non effective. Most recently I was involved in clinical trials w/pomalidomide and carfilzomib--neither was efffective in reducing my kappa light chains, which always hover in the low to mid hundreds. The odd thing is by Beta2s and LDs have always been normal. Never had any problems with my CBCs or CMPs. I've had four bone marrow biopsies. The most recent showed a plasma cell count of 4%. Last year it was between 5 and 6%. All biopsies show no chromosome deletions etc. Things look good on paper but I continue to have bone destuction. I been on Zometa and am currently on Aridia. What are we missing? I would like to go forward w/a transplant. I've had my stem cells harvested. I've been trying to get as close to remission as possible in order to have the best out come post transplant. I still work as a per diem respiratory therapist and I continue to exercise and work out as best I can. With the bone pain and trying not break any more ribs it's a fine balance. For the most part, if I did'nt have multiple myeloma I'd be a pretty healthy guy. If any of the multiple myeloma clan or doctors could add any insight to my situation it would be greatly appreciated.

[kjbender]

Re: Continuing bone lesions-decreased response to therapies.

by kjbender on Fri Feb 10, 2012 1:58 pm

Yor pathway has been full dw. was diagnosed at age 46, through all the standard treatments as well as thalodimide as a maintenance therapy and pomalidomide now on). Having carfilzomid still to go and a trial on azt. I had a stem cell transplant when my proteins were quite high and acheived a very good partial reponse, within 3 months my proteins were at - and continued that way for 21m onths. I am not sure why the hesitation to proceed with that. My recently done marrow shows 29% plasma, and i have chromosonal deletions of 13 as well. We are also so different with such varied symptoms. While 'in remisson' on the stem cell transplant, i developed lesions in both tibias, to the point where i had a right knee replacement fully done. i have had radiation also for the pain of the bones in my left knee and my spine. For some odd reasons lesions in my case are mostly stable, but have developed and caused problems also (knee).
I transferred from pomalidomide to Zometa (monthly 4mg). i will say it has helped my bone pain. I had a full scan done before starting in 12 months ago, so that we can compare in the future.
The latest thing here is combination therapies, rather than standand alone, and there is a lot being learned. When i took Velcade it was with dex (of course), and cyclophosphomide. Synergies seem to be found. My CBCs are also fine although suffering abit under pom.
I am not sure i have helped much, except to encourage the stem cell, and make sure you take your calcium, vit d and mag supplements for bones.

[dw58]

Re: Continuing bone lesions-decreased response to therapies.

by dw58 on Sat Feb 11, 2012 11:40 pm

Thanks for the response. Interesting note regarding your transplant--nice to know you had a good response, even though you had high numbers going in to it. Does your oncologist use 24hr urine tests for correlation purposes? I've taken quite a few. Nothing has ever showed in the way of abnormal protiens etc. Thanks again. And best of luck!!

[Dr. Edward Libby]

Re: Continuing bone lesions-decreased response to therapies.

by Dr. Edward Libby on Sun Feb 12, 2012 9:23 pm

Hello from the gray skies of Seattle,
Your case is complex. It sounds like you are being cared for by expert myeloma physicians or else you would not have had access to pomalidomide and carfilzomib. I dont feel as though I know enough about the specifics to comment. I would ask your oncologist to explain why your myeloma is behaving differently.

At this point if you have not already had a transplant I would go for one because it may be the best chance you have at a deep and prolonged response. You have utilized the other drugs but you have not been exposed to Melphalan which is still an excellent drug for myeloma. The purpose of a transplant is to ACHIEVE a good response or complete remission. It is not necessary or critical to to be in a CR or close to one to benefit from a transplant.

Best of luck in your struggle with this horrible disease !

[dw58]

Re: Continuing bone lesions-decreased response to therapies.

by dw58 on Mon Feb 13, 2012 11:01 am

Dr. Libby,
Appreciate your response. I have not had a transplant. Good to know prior CR is not necessary for a positive transplant outcome. Yes, I have been fortunate too work with a very fine oncologist. Unfortunately, other than saying my myeloma has a preference for eating bone or attributing it to light chain escape, he does not know why my myeloma is behaving differently. That is why I'm somewhat hesitant to have a transplant. If it's unclear why this is happening, do I take a chance on a transplant, given like my other therapies, it may decrease my light chain numbers but not have an effect on stopping my bone destruction. Thanks Again.