[lwem]

Peripheral neuropathy getting worse - causes?

by lwem on Thu Oct 29, 2015 9:24 am

Hello all -

My husband was diagnosed in April with active multiple myeloma, and underwent RVD (Revlimid, Velcade, dexamethasone) induction therapy (sub-q Velcade, not IV). It has been a month since he has taken either Revlimid or Velcade. We stopped to give him a break from all the unpleasant side effects. His peripheral neuropathy is getting worse in his feet, and he now experiences leg pain.

He has had a great response, an M-spike of 0.26 g/dL (2.6 g/L) (with second faint M-spike). He has had no other tests to determine the extent of remission. His doctor is happy with the response, and has said if he continues to have neuropathy next month, we will again consider delaying Velcade.

My question is: Should we be asking for any other tests to make sure that the peripheral neuropathy is not being caused by something over than RVD, something not showing up in the SPEP?

I am concerned that it is not getting better despite the break from treatment.

Thank you for any help.

[Gilbert]

Re: Peripheral neuropathy getting worse - causes?

by Gilbert on Thu Oct 29, 2015 1:20 pm

Best bet for relief is try a neuro-oncologist. They can test you and perhaps give you Cymbalta (duloxetine) or a generic drug for symptoms.

I had extensive difficulty with neuropathy, RVD induction, 2 SCTs in 2010. Shingles in 2011. After extreme and scary discomfort I visited with doctor recommended by my multiple myeloma specialist. Today I am in no discomfort.

[Gardajean]

Re: Peripheral neuropathy getting worse - causes?

by Gardajean on Thu Oct 29, 2015 3:32 pm

My husband has been in a clinical trial for 2 1/2 years. He took lenalidomine (Revlimid), dexa­methasone, and the trial drug for 2 years and developed neuropathy in both feet and hands. He is now only taking lenalidomine and the clinical trial drug. His doctor discontinued use of the dexamethasone approximately 4-6 months ago, but it has not made any difference in the neuropathy. The doctors are very pleased with his test results but have not offered any solutions on how to deal with the neuropathy. This could be due to the fact he has not gone in to remission, or because they are having to work within the parameters of the clinical trial.

He finds it difficult to maintain his balance without the help of a cane, and because of the neuropathy he has fallen many times. One time so hard he cracked a tooth and suffered a concussion. My husband does take Cymbalta, but he has not noticed any relief.

Our daughter, who had breast cancer, told us she also suffered from neuropathy when she was taking chemo, but that after she had finished her treatments, feelings gradually returned and she has been fine since. So it might be the Velcade causing your husbands neuropathy, but if that is keeping the myeloma at bay, the question is "What is worse? Neuropathy or myeloma?"

[TerryH]

Re: Peripheral neuropathy getting worse - causes?

by TerryH on Thu Oct 29, 2015 3:37 pm

Hi Laurie,

It is possible for neuropathy to get worse after treatment. Someone who knows more about anatomy or physiology may be able to explain how that's possible. But I know it has come up before here in the forum. Jim, for example, mentioned that it happened to him in this posting, and he was on a treatment regimen the same as your husband.

Also, Dr. Voorhees acknowledges in this posting that "delayed neuropathy" can occur. It was in reference to someone who mentioned having that her neuropathy didn't even start until after her treatment had stopped. She describes it a bit more in this posting.

I wonder if it's just coincidence that both these cases of delayed neuropathy, as well as your husband's, involved not just Velcade, but Revlimid in combination with Velcade.

I hope your husband's neuropathy starts to improve soon, and that it eventually goes away completely.

[lwem]

Re: Peripheral neuropathy getting worse - causes?

by lwem on Thu Oct 29, 2015 9:14 pm

Thank you all. These posts have been very helpful, in that others have also experienced the ongoing neuropathy after treatment is over. I will follow up on reading the other posts and also with suggested meds.

Thank you!

[Jonah]

Re: Peripheral neuropathy getting worse - causes?

by Jonah on Thu Oct 29, 2015 9:34 pm

Laurie -

There are A LOT of discussions here in the forum about peripheral neuropathy (PN). You can find many of them by typing "neuropathy" in the search box. Or you can go to this link, which lists just about every possible neuropathy-related discussion that has taken place in the forum. These include a number of discussions related to different medications for PN.

The link I just listed is from the "Useful links to existing forum discussions" posting, which is at the top of the "Treatments and Side Effects" section of the forum. It has a lot of really helpful links, organized by topic, to treatment- and side effect-related discussions that have taken place in the forum.

[SlimMoe]

Re: Peripheral neuropathy getting worse - causes?

by SlimMoe on Thu Oct 29, 2015 11:43 pm

I had neuropathy from chemo for breast cancer. Within 3-6 months it cleared up about 50%. Some days it would get extremely painful. I happened to mention it to my podiatrist and he ordered me some cream from a compounding pharmacy that helped within 10 minutes.

Here is the ingredient list from the label:

Ketamine
Baclofen
Bupivacaine
Cyclobenzaprine
Diclofenac
Gabapentin
Ibuprofen

10 / 2 / 1 / 2 / 5 / 6 / 3%

I didn't bother to look up what any of those did, I was just glad for the relief.

[Multibilly]

Re: Peripheral neuropathy getting worse - causes?

by Multibilly on Fri Oct 30, 2015 7:24 am

SlimMoe,

Holy smokes. That is quite the ingredient list. I think that cream could probably treat everything from leprosy to neuropathy to a sports injury

How much did the cream help alleviate the PN and how long did the relief last once you applied the cream?

[Margareta]

Re: Peripheral neuropathy getting worse - causes?

by Margareta on Sat Oct 31, 2015 3:52 pm

Laurie,

Don't worry because it takes a very long time to get better. I got my peripheral neuropathy after induction therapy with Velcade and my doctor wanted me to have another 2 cycles while waiting for SCT. So we stopped and I had medicines for it but it made no difference. Then I had two transplants, the second because of not complete response and since I couldn't have maintenance Velcade because of peripheral neuropathy.

I was told that PN would get better but didn't ask when. It takes a very long time, my induction therapy was in the summer 2012. Only now I can feel improvement, but it is very slow. As I got stronger after transplants I had a lot of massage to feet and legs and also doing exercises (Pilates) to make muscles strong. I still wear mainly trainers because I am afraid of falling and breaking bones. But a small price to pay for normal health.

[Julius Bramley]

Re: Peripheral neuropathy getting worse - causes?

by Julius Bramley on Sun Nov 01, 2015 1:03 am

I had a stem cell transplant (SCT) 9 years ago and last chemo in January 2014. Counts are now stable. Was given thalidomide 10 years ago and was warned that a side effect was peripheral neuropathy. The thalidomide only worked briefly and was followed by the SCT. Peripheral neuropathy started after the SCT and has become progressively worse, with "restless foot syndrome" cramps accompanied by unsteady walking due to loss of sensation.

I saw a physiotherapist a week ago who gave me series of exercises to repeat twice a day. Multiple myeloma is not well known here (sometimes I am astonished at how many medical people HAVE heard of it) and the treatment is most times symptomatic. I will give the exercises a shot and see what happens!