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General questions and discussion about multiple myeloma (i.e., symptoms, lab results, news, etc.) If unsure where to post, use this discussion area.

Bone Pain

by ninja performance on Fri Feb 10, 2012 3:31 pm

Initially 8.9 mspike and 80% marrow, after 5 cycles 0.1 and 2%

After 5 cycles of Velcade/Dex/Rev, I finally had a PET scan done. Initial full body xray at diagnosis did not show anything. But I had/have spine and rib pain. PET shows "Multiple level osteolytic changes in ribs and vertebral bodies compatible with treated Multiple Myeloma Disease."

So does this mean they are repaired?
I still have pain, Not nearly as wide spread of intense as when I was DXd.

How long will I have bone pain? Does it ever go away?

-Chris

ninja performance
Name: Chris Hill
Who do you know with myeloma?: Self
When were you/they diagnosed?: 08/04/2011
Age at diagnosis: 43

Re: Bone Pain

by greg matthews on Fri Feb 10, 2012 8:59 pm

Sorry to hear that chris! I never had bone pain, I am in remission todate( since July 2011). have a complete myeloma work up coming in march to see if i still am.

greg matthews
Name: Greg Matthews
Who do you know with myeloma?: myself
When were you/they diagnosed?: 12-28-2010
Age at diagnosis: 48

Re: Bone Pain

by ninja performance on Fri Feb 10, 2012 9:26 pm

Thanks. Bone pain was one of the reasons I finally went to the ER, which at that point I was 6.3 HGB, 8.9 M spike and 80% marrow. I was in bad shape. The bone pain was excruciating. I didn't break any bones though. And the MRI last week showed my back was in good shape except degenerative disc disease in many discs. But the bones are good. I am MUCH better now, the pain is MUCH less and in less places. There are however some spots that persist both on my spine and my ribs and shoulders. Just wondering how much longer until it goes away or is it something I will have forever.

Chris

ninja performance
Name: Chris Hill
Who do you know with myeloma?: Self
When were you/they diagnosed?: 08/04/2011
Age at diagnosis: 43

Re: Bone Pain

by Ron Harvot on Sat Feb 11, 2012 12:42 am

Chris,

Are you on Aridia or zometa? Those drugs work to harden bones and heal lesions. I too have been on RVD, now going on 3 years but have also been on aredia for the same period. You might want to ask your oncologist about these two drugs.

ROn

Ron Harvot

Re: Bone Pain

by NSTEWART on Sat Feb 11, 2012 12:51 am

Chris-
I've been on Zometa for 3 years after developing a pathologic fracture of my arm. Once I started the Zometa, Revlimid and Dex the bone pain began to diminish. Now I begin to have some achiness right around when I am due for my next infusion of Zometa. I have lesions everywhere and they have remained stable in the last 2 years.

If you aren't on either Zometa or Aredia to help to strengthen your bones, then I would suggest that you talk to your oncologist about it. Especially if you have lesions, no matter how stable they are at this point.
Nancy

NSTEWART
Name: Nancy Stewart
Who do you know with myeloma?: self
When were you/they diagnosed?: 3/08
Age at diagnosis: 60

Re: Bone Pain

by ninja performance on Sat Feb 11, 2012 9:48 am

Thanks Nancy,

Since I will be going into SCT, my oncologist said she would not put me on it until afterwards. And I have not had any up to this point. And the possible side effects of Zometa scare me.

Chris

ninja performance
Name: Chris Hill
Who do you know with myeloma?: Self
When were you/they diagnosed?: 08/04/2011
Age at diagnosis: 43

Re: Bone Pain

by Canuck Bob on Sat Feb 11, 2012 12:33 pm

My bone pain was incredible prior to treatment. I also have severe arthritis, two artificial hips in my 40's, so for the longest time it was diagnosed as arthritis. Between an abscessed tooth that refused to heal and the pain we started the process that found multiple myeloma.

I had three small lesions, shoulder, hip, and skull, but no other damage after testing. My pain subsided quite a bit after my numbers dropped from chemo. I'm now post ASCT and with the added activity at work and home my pain has returned a bit. I started bone juice again on Jan. 3, monthly. It was stopped for the ASCT as well. It is hard to seperate the pain between arthritis and multiple myeloma for me but i manage without pain meds quite well. My most noticeable symptom is stiffness after a long drive. I'm a travelling salesman.

I've lived with serious joint pain for twenty years but multiple myeloma bone pain was a whole new level. I despise opiates but was close to giving in. If possible find a topnotch arthritis (they know a lot about chronic bone and joint pain) or pain specialist. As your numbers drop after the ASCT and treatment with bone juice you have real hope of realizing relief.

Canuck Bob
Name: Bob
Who do you know with myeloma?: Myself
When were you/they diagnosed?: Feb. 2011
Age at diagnosis: 57

Re: Bone Pain

by Dr. Edward Libby on Sun Feb 12, 2012 8:02 pm

Greetings from gray and cloudy Seattle,
For most patients bone pain resolves when the myeloma is brought into remission (good control). Unfortunately it can take many months for the pain to disappear. In bones that are constantly subjected to stress like the spine and ribs it can be easily 6 + months before pain is gone. In some patients the pain never completely goes away but in nearly all it improves dramatically with treatment.
Dr. Edward Libby
University of Washington & Fred Hutchinson Cancer Research Center

Any advice provided in these postings is based on a very limited amount of information. There is no substitute for the care of your oncologist/hematologist. Therefore, all suggestions should be discussed with your treating physician. None of the comments presented here are meant to replace the evaluation of a patient by a knowledgeable physician.


Dr. Edward Libby
Name: Edward Libby, M.D.
Beacon Medical Advisor


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