[Sister In Law]

Hubby just diagnosed with Stage 2 multiple myeloma

by Sister In Law on Mon Oct 19, 2015 10:59 pm

Hi,

I have written a few posts, but cannot really find them again and hope to start fresh here, since we now know my hubby has stage 2 multiple myeloma. It is not aggressive, or low-key. It's middle of the road. He has no lesions, he has no kidney dysfunction, his heart is good, his calcium levels are fine. He has no CRAB, but he does have 30% myeloma in his bone marrow.

We had a nasty insulting doctor right off the bat. I got rid of him today and we are now in with the best myeloma specialist in Spokane. I am relieved.

My husband does not start his treatment until the 30th. He feels TERRIBLE. He's weak, he has nerve pain (that was his first symptom) and such fatigue. He's very discouraged to have to wait another ten days. I feel so sad for him. His sister died in December of this same disease (actually complications of a stem cell transplant due to her advanced amyloidosis/myeloma). His father had kappa myeloma 20 years ago and is in total remission. No stem cell transplant – just melphalan and prednisone. He lives on a small dose of prednisone every day and is fine other than dementia. My husband's type is lambda myeloma and the protein is evidently causing severe neuropathy.

He feels doomed with this pain. We have heard that the nerve pain can get better once treatment starts. The plan is to give him Revlimid / Velcade / dex.

Are there any comments that you might share to make him feel better. He's felt so bad for so long. Waiting, waiting, waiting. He asked them to check him for myeloma five months ago and no one could seem to handle that request. It took a PA to find it. Sad state we are in.

I will now try to stay with this thread. I got sort of messed up when I first started posting.

Thanks everyone.

[mikeb]

Re: Hubby just diagnosed with Stage 2 multiple myeloma

by mikeb on Tue Oct 20, 2015 11:58 am

Hi Sister In Law,

First of all, I'm sorry that so many people in your and your husband's family have been hit with multiple myeloma. There ought to be a law against that!

A couple of thoughts about your latest post. It should be considered to be good news that your husband does not have aggressive myeloma. I'm assuming you are saying it is non-aggressive based on FISH test results from a bone marrow biopsy, or something like that. (BTW, I've never heard of anyone refer to any form of myeloma as "low key.")

Also it is good that your husband does not have any of the CRAB symptoms, heart problems, etc. All in all, it sounds like his myeloma has been caught fairly early, even if he has been having the nerve pain problems for awhile.

One thing you might look into regarding the nerve pain. If what you're referring to as "nerve pain" is peripheral neuropathy (PN) - pain / numbness / tingling in extremities like hands and feet - then you might ask your husband's oncologist about using something like Lyrica (pregabalin) to help with those symptoms. That's a prescription drug that has helped me with PN. There are also supplements that sometimes help, like alpha-lipoic acid, L-carnitine, and vitamin B100 complex.

Best wishes to you and your husband. Please keep us posted on how things go.

Mike