[mikedarty]

Neuropathy as a sympton of Multiple Myeloma

by mikedarty on Thu Feb 21, 2013 8:54 pm

Sadly, I get to add my name to the list of new patients. Five months ago, I seemed in excellent shape for a 54 year old, going on hikes 3 to 4 times a week, when I noticed the pads of my feet getting numb, and my leg strength getting weaker. I was first diagnosed with Neuropathy (mostly in the lower legs), and finally multiple myeloma. Now days, I struggle to make it up a flight of stairs, have a bad case of drop-foot, and little balance. The good news is that it is not painful, but it is frustrating.

My question is if anyone else has gone through something like this, and what can be done to help with the Neuropathy? Most of what I find online is Neuropathy as a side effect of a drug, but little where the Neuropathy is a symptom of multiple myeloma. I am currently being treated with Velcade (and Doxil) which I know has a side effect of Neuropathy. Is there anything someone can recommend?
Thanks in advance
Mike

[coop223]

Re: Neuropathy as a sympton of Multiple Myeloma

by coop223 on Thu Feb 21, 2013 11:35 pm

I used cymbalta. It worked on the neuropathy i had in my feet. I believe I read online somewhere that it would/could help. Before that, my Dr. Had me on gabapentin 300mg three times a day. Gabapentin didn't work, cymbalta did. Talk to your Dr. About it.

[coop223]

Re: Neuropathy as a sympton of Multiple Myeloma

by coop223 on Thu Feb 21, 2013 11:37 pm

PS. Velcade caused my neuropathy

[Eric Hofacket]

Re: Neuropathy as a sympton of Multiple Myeloma

by Eric Hofacket on Thu Feb 21, 2013 11:53 pm

My neuropathy was Velcade induced and resulted in significant leg pains up to my knees. I used lots of morphine and hydromorphone for the pain which only helped somewhat. There is a significant down side to heavy use of opiate pain killers. I became dependent on these drugs and was unable to stop using them after I was taken off Velcade and the neuropathy slowly started to subside. Long term use of opiates can cause severe constipation which I developed and had to go to the ER for after not having a bowl movement for 7 days. It was not until I was in City of Hope receiving my stem cell transplant and on various drugs for nausea that I believe helped me with the withdraw symptoms that I was able to quit these drugs.
The best thing I found for neuropathy pain was exercising the legs. I would walk circles inside my house or ride my stationary bike, and the best thing of all was lap swimming when I could. Swimming could make the pain that morphine only partially helped go away completely. Unfortunately the relief mostly only lasted while I was actively exercising.

[JimNY]

Re: Neuropathy as a sympton of Multiple Myeloma

by JimNY on Fri Feb 22, 2013 12:50 am

Mike,

What can I say? I'm very sorry you've joined the club. At least you've found a good place where there's other people in a similar situation.

I've read several times here in the forum that peripheral neuropathy can be caused by multiple myeloma by itself. It's not necessarily a common manifestation of the disease, but it can be one of the symptoms.

This link will take you to a list of all the neuropathy-related threads here in the forum. Maybe there will be one there that will be helpful (warning: there are LOTS of threads on the topic):

http://tinyurl.com/bemk59a

Best of luck to you!

[Nancy Shamanna]

Re: Neuropathy as a sympton of Multiple Myeloma

by Nancy Shamanna on Fri Feb 22, 2013 9:50 am

Hi Mike, I also had neuropathy in my feet before being diagnosed, although not 'drop foot'. I remember standing on choir risers during a long concert and being barely able to step down from them and just hobbling away from the event. At the time I thought that must be normal but now that I have had the myeloma treated and am in remission that is not so much the case anymore, and I realized that the neuropathy was from the cancer. I then also took Velcade as induction chemotherapy and for a while I had more neuropathy, especially in my feet. But eventually, after being off of chemo drugs for a few months (I also had a different sort of neuropathy from Revlimid), it all cleared up, and I don't have much neuropathy anymore. So hopefully you will get over this also...I don't know much about helpful supplements, although others do. I didn't take any green tea or Vitamin C while on Velcade though, since that can interfere with the action of that drug.

[cancer1]

Re: Neuropathy as a sympton of Multiple Myeloma

by cancer1 on Fri Feb 22, 2013 12:26 pm

Sorry to hear about your PN. According to IMF presentation yesterday, PN with Velcade can be reduced if given once a week sub-cutaneously. Are you on this regimen? E Bridges

[mikedarty]

Re: Neuropathy as a sympton of Multiple Myeloma

by mikedarty on Fri Feb 22, 2013 8:37 pm

Thanks for everyone’s recommendations and comments. As I try to learn and understand more about this monster, everybody’s experience and advice is very much appreciated.

coop223 - I will discuss Cymbalta with my doctor on Monday. They did give me a weeks worth of IVIG IV's, but that did little if anything to help my Neuropathy.

Eric - I have also noticed that exercise seems to help, at least with my gait. I've started climbing a flight of stairs first thing in the morning, and it seems to make things a bit easier the rest of the day.

JimNY - Thanks for the links. I will definitely go through them.

Nancy - Thanks for the hope. My life is basically on hold as we battle this beast and see what the consequences are after treatment. I'm just hoping to get close to normal after all is said and done.

Cancer1 - I am currently getting two shots a week in the stomach area. The doctor says this is supposed to reduce the likelihood of side effects.

Thanks again,
Mike

[genk]

Re: Neuropathy as a sympton of Multiple Myeloma

by genk on Fri Mar 01, 2013 8:47 am

I have no neuropathy yet but have not gotten any Velcade or any of those drugs. I have only taken Revlimid and Dexamethasome plus an Auto Stem Cell Transplant. The massive dose of chemo during the transplant did not cause any. Till I get into Velcade and other chemos I may not experience any. I discussed my total treatment last month with my doctors and I questioned that my treatment strategy is to take the least invasive forms of treatment as long as they work and the experience is that with each step up used to treat the multiple myeloma will become more invasive as we go that will most likely include neuropthay to develop.