[dturner]

Severe back pain during treatment; no apparent lesions

by dturner on Tue Sep 06, 2016 9:38 pm

My mother-In-law has multiple myeloma and has so far had an autologous stem cell transplant
and the standard melange of Revlimid and dexamethasone and then the standard run.

She is now in severe agonizing pain. It started in her lower back and now has moved and worsened in her upper back. She was and is having multiple spasms.

Coincidentally, she started taking Pomalyst about a month before these pains started.

On the side effects page (and after talking to customer service at Celgene) it is confirmed that up to 15% of people taking it can suffer from acute, hospitalizing, debilitating pain.

Our problem? The oncologist will not consider the fact that the Pomalyst could be the problem and cause of the pain. He has not been able to find ANY lesions, and or issues from multiple MRIs and x-rays and CS. Does anyone have any suggestions?

The oncologist stated that the Pomalyst is not even helping (none of the drugs have helped her) but, as stated, lesions are nonexistent.

What would you suggest our plan of actions should be. The doctor can't figure out what is going on, but at the same time denigrates our suggestion of Pomalyst being the culprit.

[Multibilly]

Re: Severe back pain during treatment; no apparent lesions

by Multibilly on Wed Sep 07, 2016 5:48 am

David,

In addition to what you cited on the Celgene site, muscle spasms in particular are listed as a major more-common side effect of Pomalyst. See, for example, the this summary of information about the drug.

This thread might also help a bit.

"Pomalyst side effects (e.g., extreme fatigue)?" (forum discussion started Jan. 14, 2014)

You may want to consider getting a second opinion from a different hematologist / oncologist who specializes in multiple myeloma. It always pays to seek out a myeloma specialist that works with many multiple myeloma patients on a daily basis and has a lot of experience with the side effects of some of the newer drugs. If you let us know what city that patient lives in, folks on this forum can make some recommendations about specific facilities or doctors to seek out.

[MrPotatohead]

Re: Severe back pain during treatment; no apparent lesions

by MrPotatohead on Fri Sep 09, 2016 1:19 am

Hi David,

I strongly second Multibilly's suggestion to get a second opinion from a hematologist / oncologist who is a multiple myeloma expert. Experienced folks on this board can assist with that in terms of helping you find clinicians convenient to your location.

This cancer is a complex beast, and there is a lot to know in treating it successfully. The good news is that there has been explosive growth in understanding it and developing new treat­ments recently; the bad news is that effective treatment often requires a specialist who can invest the substantial time required to keep up with the latest research.

There is help out there for your mother-in-law. Good luck to her and to you.