[samboo]

Peripheral neuropathy from stem cell harvest?

by samboo on Mon Apr 04, 2016 12:47 am

Diagnosed with IgG kappa myeloma last year, fortunately I have fairly low numbers compared to many who post here. And I've responded well to treatment, so I feel doubly fortunate.

I've done 5 cycles of Revlimid, Velcade, and dexamethasone (RVD), and then took a short break to recover for a stem cell harvest. Right after the harvest (which went well) I got a really bad bout of the flu and what has turned into a pretty bad bout of peripheral neuropathy. I'm still dealing with the peripheral neuropathy.

The weird thing is that the doctor doesn't think the peripheral neuropathy is from Velcade because it had been weeks since I took it. I didn't tolerate the Neupogen that well - spiked a fever when I took it (although that could have been the flu).

So the peripheral neuropathy is either a delayed reaction to Velcade (which I had been tolerating fairly well), or something caused by the stem cell harvest.

Anybody else have an adverse reaction like this from a harvest. Seems that pumping 18.5 liters of blood through an aphaeresis machine could do some screwy things to your body.

Thanks in advance for any insight.

-Sam

[Melpen]

Re: Peripheral neuropathy from stem cell harvest?

by Melpen on Tue Apr 05, 2016 3:51 pm

Yes, my neuropathy got worse after collection and after the transplant. The Neupogen shots caused lots of bone and muscle pain and also made my neuropathy worse. Doctors won't believe it but it happened to me too. With time it should get better and there are medications that will help if the neuropathy gets unbearable.

[Schaef67]

Re: Peripheral neuropathy from stem cell harvest?

by Schaef67 on Wed Apr 06, 2016 9:26 am

Sam,

You are definitely not alone. I also experienced much worse neuropathy in my feet for about a month after the stem cell harvest. This was after tolerating the RVD regimen with almost no symptoms. The good news is that it has subsided. My doctors also can't really pin down the cause, whether the Neupogen / Cytoxan or delayed reaction to Velcade.

Hang in there!

Steve

[samboo]

Re: Peripheral neuropathy from stem cell harvest?

by samboo on Mon Apr 11, 2016 11:31 am

Thanks, Melpen and Steve!

It helps me tremendously to know you had similar experiences. Hoping the peripheral neuropathy will subside over time.

Take care!

- Sam

[Little Monkey]

Re: Peripheral neuropathy from stem cell harvest?

by Little Monkey on Tue Apr 12, 2016 5:47 pm

Melpen wrote:

Yes, my neuropathy got worse after collection and after the transplant. The Neupogen shots caused lots of bone and muscle pain and also made my neuropathy worse. Doctors won't believe it but it happened to me too. With time it should get better and there are medications that will help if the neuropathy gets unbearable.

Sometimes I think there is a real disconnect between doctors and myeloma patients on the subject of peripheral neuropathy of the legs.

[Janet1520]

Re: Peripheral neuropathy from stem cell harvest?

by Janet1520 on Sun Apr 17, 2016 3:32 pm

I had the same experience as Schaef67. I had been off Velcade for a month during stem cell preparation and collection, but my neuropathy really reached a crescendo after stem cell collection. It was the worst feeling. I couldn't bear to even have the bed sheets touch my feet.

I do believe it was from the Neupogen shots, as I'm still on Velcade during maintenance and I have problems with the Velcade.

[Bemerton]

Re: Peripheral neuropathy from stem cell harvest?

by Bemerton on Fri Jul 13, 2018 3:01 pm

My partner is having a similar experience. He has been off Velcade for a month prior to stem cell preparation and his neuropathy had almost disappeared. Since the 5th day of filgrastim (Neupogen) injections, the neuropathy has worsened.

[BethBurn]

Re: Peripheral neuropathy from stem cell harvest?

by BethBurn on Sat Feb 23, 2019 11:03 pm

Yes, me too (I think). I had my stem cell harvest last week and am having more peripheral neuropathy than any time previously. I noticed it during collection, at the same time I felt the tingling in my lips from the citrate. Hoping it subsides soon.

[wwieland]

Re: Peripheral neuropathy from stem cell harvest?

by wwieland on Tue Mar 19, 2019 3:03 pm

This is odd to me. I went through about eight months of Revlimid, followed by an autologous stem cell transplant, followed by more Revlimid when the myeloma came back. I did not experience any neuropathy until we started Velcade and Darzalex treatments. And that treatment regimen left me with pretty intense neuropathy in my left hand and both feet. The neuropathy has persisted ever since. Lyrica (pregabalin) makes it tolerable, but it never really diminishes. Makes walking a challenge and the tingling is distracting.

[Nancy Shamanna]

Re: Peripheral neuropathy from stem cell harvest?

by Nancy Shamanna on Wed Mar 20, 2019 2:28 pm

Hello Wesley,

I am sorry to hear that you are experiencing neuropathy while taking Darzalex plus Velcade. May I ask if you are taking the Velcade subcutaneously or by intravenous infusion? The subcutaneous method is supposed to cause less of neuropathy than the infusion. I took Velcade by infusion for four cycles during my induction therapy back in 2009. The subcutaneous mode of administration was not yet used. I did have some mild neuropathy in my feet. The Revlimid I took also seemed to cause some neuropathy.