My mom apparently is in CR after one heavy cycle of VRD. She is now about to begin her third cycle at half the amount of Velcade. She is having pretty severe neuropathy, and she said her whole body sometimes "feels on fire". Does anyone have any advice on where we should go from here?
Her doctor does not think she is strong enough for a stem cell transplant yet ... and she definitely does not want to go down that route at this time unless it's the curative method.
Thanks.
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Re: Remission from VRD, but severe neuropathy - what next?
As you know, neuropathy can be a significant side effect of Velcade. Most doctors now are vigilant about this side effect. In my own case, at one point I developed very mild neuropathy during VRD treatment and my doctor immediately discontinued the Velcade until it went away.
Medications such as Gabapentin and Lyrica have given some neuropathy sufferers relief and may be worth exploring.
Medications such as Gabapentin and Lyrica have given some neuropathy sufferers relief and may be worth exploring.
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goldmine848 - Name: Andrew
- When were you/they diagnosed?: June 2013
- Age at diagnosis: 60
Re: Remission from VRD, but severe neuropathy - what next?
Hi Hopeful27,
Is your mom getting the Velcade shot subcutaneously? I have had the CyBorD regimen [cyclophosphamide, Velcade, dexamethasone] for about a year and found that switching to subcutaneous shots significantly reduced any neuropathy. Also, recent studies have confirmed both routes are equally effective.
I've been lucky to only have very mild PN on the palms of my hands and soles of my feet, but everyone is different. Also, it seemed worse the evening after my Velcade shot. Recently maintenance for the past year has been only Velcade every two weeks and daily 50 mg thalidomide. The mild PN seems worse on the evenings when both drugs are given, like there's a dose impact on the PN.
Therefore her doctor might reduce the Velcade dose if her PN gets unbearable for her.
I wish your mom all my best, that she will respond well to this treatment and get her disease under control.
Dan
Is your mom getting the Velcade shot subcutaneously? I have had the CyBorD regimen [cyclophosphamide, Velcade, dexamethasone] for about a year and found that switching to subcutaneous shots significantly reduced any neuropathy. Also, recent studies have confirmed both routes are equally effective.
I've been lucky to only have very mild PN on the palms of my hands and soles of my feet, but everyone is different. Also, it seemed worse the evening after my Velcade shot. Recently maintenance for the past year has been only Velcade every two weeks and daily 50 mg thalidomide. The mild PN seems worse on the evenings when both drugs are given, like there's a dose impact on the PN.
Therefore her doctor might reduce the Velcade dose if her PN gets unbearable for her.
I wish your mom all my best, that she will respond well to this treatment and get her disease under control.
Dan
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Dan in Phoenix
Re: Remission from VRD, but severe neuropathy - what next?
Hi hopeful27,
You' ve gotten good feedback and suggestions in the postings above.
I have a question. Did you mother have any chromosomal abnormalities when she was diagnosed that indicated she might have high-risk myeloma?
You' ve gotten good feedback and suggestions in the postings above.
I have a question. Did you mother have any chromosomal abnormalities when she was diagnosed that indicated she might have high-risk myeloma?
Re: Remission from VRD, but severe neuropathy - what next?
Hi Cheryl,
No, strangely ... she did not. Her bone marrow biopsy said standard risk. However, we are seeking a second opinion with a specialist in a few weeks.
Her kappa light chains went from over 7000 to a normal range within two weeks of treatment. Crazy stuff or idk. We are just going to enjoy it whatever it is.
No, strangely ... she did not. Her bone marrow biopsy said standard risk. However, we are seeking a second opinion with a specialist in a few weeks.
Her kappa light chains went from over 7000 to a normal range within two weeks of treatment. Crazy stuff or idk. We are just going to enjoy it whatever it is.
Re: Remission from VRD, but severe neuropathy - what next?
Thanks for the reply, hopeful27.
It's great that your mother has responded so well to treatment and that she didn't have any high-risk chromosomal abnormalities at diagnosis. I think those are good signs.
With such a great response to treatment, it may be worth seeing if you your mother can get a minimal residual disease (MRD) assessment. That could give you some additional peace of mind.
Good luck!
It's great that your mother has responded so well to treatment and that she didn't have any high-risk chromosomal abnormalities at diagnosis. I think those are good signs.
With such a great response to treatment, it may be worth seeing if you your mother can get a minimal residual disease (MRD) assessment. That could give you some additional peace of mind.
Good luck!
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