[NZMum]

Peripheral neuropathy after stem cell transplant

by NZMum on Thu Oct 16, 2014 8:02 pm

Hi Everyone,

I had my stem cell transplant (SCT) a month ago and have had no Velcade since mid July. I was on VCD (Velcade, cyclophosphamide, dex / CyBorD) prior to my SCT. My transplant went really well – only problems were low BP and fatigue, probably partly from really low BP.

While these problems are slowly improving, I have noticed over the last few days some numbness in my right foot and up to mid calf. When on Velcade, the only sign of peripheral neuropathy (PN) I had was restless legs at night. The numbness started at night, but has increased and is now most of the day as well. It isn't painful more – like your leg has gone to sleep when you sit in a strange position.

I would see my regular doc but he is away and don't want to see a Locum as they want to know everything! Don't see my specialist until mid November, but just worried if this is normal.

Wondered if anyone else had experienced this?

Jen

[kullybunnny1]

Re: Peripheral neuropathy after stem cell transplant

by kullybunnny1 on Fri Oct 17, 2014 12:02 am

Jen,

I went through VRD induction therapy and noticed peripheral neuropathy (PN) in both my hands and feet from the Velcade. I also felt it on my inner thighs and, when I described it to my oncologist, she felt that this was not attributed to PN. I had significant spine involvement so I felt (not a doctor here) that perhaps it was tied to nerve damage.

As I was having my stem cells harvested, the medication that was administered to stimulate growth seem to cause increased PN in my feet to the point of extreme discomfort (burning). I went through the ASCT and after 30 days my PN was to the point that my gabapentin (Neurontin) dosage was increased (300 mg 4 times a day).

Now, 6 months post-transplant, my PN is still significant and perhaps worst. I have the option of increasing my gabapentin dosage but fear that I may not notice when the PN eventually decreases so, for the time being, I'll stay the course. The numbness is still there on my inner thighs so I just keep pushing my self with a walking program for conditioning.

It's a long strange journey this multiple myeloma and I find that as you describe potential side effects to doctors from different medications, you find that unique individual tendencies seem to be the norm.

Good luck NZMum and I hope this helped!

Kully

[mikeb]

Re: Peripheral neuropathy after stem cell transplant

by mikeb on Fri Oct 17, 2014 12:23 pm

Hi Jen,

Congratulations on the SCT going well so far. You should be past the worst of it now at +30 days.

My peripheral neuropathy worsened some after my stem cell transplant. I've been told by my myeloma specialist that melphalan can sometimes cause peripheral neuropathy as a side effect. Unfortunately.

In your case, I think you should let your myeloma specialist know about this sooner rather than later - don't wait until you see him / her in November. Your specialist should have suggestions about how to lessen the effect, if what you're experiencing now is peripheral neuropathy. Lyrica has been a help to me, and I'm also taking several supplements recommended by my specialist.

[NZMum]

Re: Peripheral neuropathy after stem cell transplant

by NZMum on Fri Oct 17, 2014 3:51 pm

Hi Kully and Mikeb,

Thanks for your response. Sorry to hear your PN is causing you such problem Kully, but I agree about the exercise and am managing to increase what I can do each day and it feels good. Plan to start swimming and biking next week.

Mikeb, thanks for the info about the melphalan. I had overlooked that as a contributor and had started to panic a bit that my SCT might not have been that successful. Will look at the medication if needed but managing to tolerate it at the moment.

I will also contact my doctor next week.

Waiting for results from having levels checked after transplant is making me a bit nervous!

Jen