Multiple Myeloma Support Group

Multiple myeloma (also known as MM, myeloma, plasma cell myeloma, or as Kahler's disease after Otto Kahler) is a type of cancer of plasma cells, immune system cells in bone marrow that produce antibodies. Its prognosis, despite therapy, is generally poor, and treatment may involve chemotherapy and stem cell transplant. It is part of the broad group of diseases called hematological malignancies... There are approximately 45,000 people in the United States living with multiple myeloma, and the American Cancer Society estimates that approximately 14,600 new cases of myeloma are diagnosed each year in the United States. It follows from here that the average prognosis is about three years. Multiple myeloma is the second most prevalent blood...

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Periperal Neuropathy.. does it ever go away?

My PN has improved with Lyrica but its still there. Does it ever go away completely? If my MM comes back and I need the Chemop again will it come back with a vengence" Although I am in remission the PN is keeping me from enjoying it. Does having the bone marrow transplant have any effect ?

Replies

deleted_user
deleted_user

Hi Chuck,
My husband just had a tandem transplant and yet his PN is still persistent. This, of course, was a result of Velcade. The docs assure him that it will subside in time but for now, he still has problems with it. He takes Neurontin (gabapentin) for it and that helps a lot. Still the pins and needles and "starbursts" persist. I'm hoping that the docs were right and it will eventually resolve. This is just our experience. I say that whatever helps is the way to go. I hope this helps. Blessings, Sarah
deleted_user
deleted_user

Thanks. GAbo didnt help much but Lyrica seems to be working at some level. Still it hurts to be in remission and still have the PN. Velcade was the culprit in my case too but it also kicked MM's butt ! My markers are really great so I guess I cant complain too much.
deleted_user
deleted_user

I'm with Chuck on this one, I have no disease progression but my feet hurt a bit. The nice thing is I am on the side of the sod where I can complain about my sore feet!

I don't think you recover much from peripheral neuropathy, I think you just get used to it.
pris72
pris72

I was just put on lyrica for my PN. I haven't taken it long enough to know if it is going to help. I use to take neurontin, but not a great deal of help with it. I just have an EMG/nerve conduction study today and I am so so sore from the needle sticks. Little knots all over my arms. Feels like I have been run over by a truck. My neurologist is putting me through a lot of tests right now to see if I have MM. He said I have all of the classic symptoms of it, other than the weight loss part but that's because I take prednisone all of the time. I have gained weight, even though I have no appetite.
deleted_user
deleted_user

First Pris 72, I hope you dont have MM ! As for the Lyrica it has seemd to have worked some for me. The PN did spread to my fingers but taking it 3 times a day has reduced it in my feet 80%. It's no longer my main concern.

I am a bit concerned about your Doc's diagnosis. PN isn't a symptom of MM. It's a side effect from the chemo, especially Velcade. Which by the way battered my MM into remission. Why are you taking the steroid?
deleted_user
deleted_user

Actually PN IS a symptom of MM just a little more obscure.
What happens is amyloid proteins deposit on nerve tissue or myelin is stripped away by the disease or the nerves themselves get invaded by myeloma tissue..

According to the literature there are 4 different types of PN that occur in myeloma.

This disease is mind numbingly complex.
deleted_user
deleted_user

My transplant was almost 6 years ago and I'm still in remission. Never took any meds except dex prior to transplant but the neuropathy is in my feet with a vengence. I've tried 4 different meds but all gave me weird side effects. I tried acupuncture and it's been a blessing. I can now wear shoes again, not just slippers, and am able to function almost normally. Be careful who you go to, though. I went to an MD who is an internist and now does acupuncture (recommended by my oncologist) and he's fabulous. Good luck!
deleted_user
deleted_user

very interesting. My Physical Therapist also recommended accupunture. I may try it if the Lyrica stops helping. As a physicist I am very leary of Eastern medicine as it doesnt make scientific sense. Anyone else try accupuncture?