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Discussion about multiple myeloma treatments, stem cell transplants, clinical trials, alternative medicines, supplements, and their benefits and side effects.

Peripheral neuropathy

by InQ on Thu Mar 06, 2014 4:02 pm

Say you are an chemo, with a potential side effect of peripheral neuropathy.

However, when you do your cycles of treatment, you do not have any of the side effects.

Does this mean that you will not get side effects in future treatments? Or will future treatments be a catalyst for peripheral neuropathy?

InQ

Re: Peripheral neuropathy

by Kate on Fri Mar 07, 2014 7:03 pm

Hi InQ,

Every person is effected differently. When I was on 25mg Revlimid x 21 and dex 20 mg x once a week, I barely noticed any side effects. Then, bang, in the 4th month I became anemic and needed a blood transfusion; so Revlimid was reduced.

As far as neuropathy is concerned, I know of a few people who "picked up" peripheral neuropathy and still have it even after treatment stopped. Might be individual again to each case.

I for one am not on Velcade because it seems to be a bigger culprit for neuropathy than some of the other meds, hence I declined to take it.

Kate

Kate
Name: Kate
Who do you know with myeloma?: myself
When were you/they diagnosed?: Dec. 2012

Re: Peripheral neuropathy

by Wayne K on Sat Mar 08, 2014 2:02 pm

I did a full treatment of Velcade/prednisone and I have some mild neuropathy in the tips of my fingers only on my left hand. This is almost 4 years post treatment. Others have reported much more than that and it doesn't seem that there is any standard.

Wayne K
Name: Wayne
Who do you know with myeloma?: Myself, my sister who passed in '95
When were you/they diagnosed?: 03/09
Age at diagnosis: 70

Re: Peripheral neuropathy

by Guitarnut on Sat Mar 08, 2014 10:57 pm

I had severe neuropathy with Velcade and Dex. It got so bad that my torso felt (to use Pat Killingsworth's description) like a tuning fork. My feet lost all feeling so much that I burned them in a hot bath. I didn't realize how hot the water was until I started to sit down.

My Velcade was reduced and over time the neuropathy went away for the most part. I think it's more of an individualized response but that's only a guess on my part.

Guitarnut
Name: Scott Hansgen
Who do you know with myeloma?: Me
When were you/they diagnosed?: Sept 2011
Age at diagnosis: 47

Re: Peripheral neuropathy

by Dr. Jason Valent on Sun Mar 09, 2014 4:45 pm

The neuropathy from Velcade generally occurs after 4 to 6 cycles of therapy. It is a cumulative side effect although the increase in risk of neuropathy strangely levels off after 6 cycles.

Dr. Jason Valent
Name: Jason Valent, M.D.
Beacon Medical Advisor


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