I started to experience the beginnings of peripheral neuropathy after my 3rd cycle of Revlimid, Velcade, and dexamethasone (RVD) and my hematologist / oncologist immediately reduced the Revlimid dose (from 25 mg to 20 mg) and the Velcade subcutaneous dosage.
I'm doing 40 mg dex and Velcade twice a week now, plus 20 mg Revlimid for 14 on 7 off. So far so good. Side effects tend to pile up towards the end of the 14 days, and it takes 3-4 days of off week to feel "normal" again, but all in all, manageable other than some of the digestive and lack of appetite issues that go along with this treatment. Dex doesn't impact me too much other than the crash that comes about 48 hours after I take it. Sleep good most nights, but the peripheral neuropathy worried me.
Headed for an autologous stem cell transplant sometime in October. Ready to move on to the next challenge and recovery.
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GoDucks - Name: GoDucks
- Who do you know with myeloma?: me
- When were you/they diagnosed?: March, 2017
- Age at diagnosis: 61
Re: Neuropathy continuing / increasing post treatment?
I was diagnosed with multiple myeloma in August of 2011. I went through 4 rounds of Velcade, Revlimid, and dexamethasone between then and January 2012. Then I had my transplant. I am in complete remission. However, I have been dealing with peripheral since November of 2011. I hate to be the bearer of bad news, but mine has not gone away in the least little bit until recently.
I have been being seen by a physical therapist and receiving deep needle treatments and kinesiology tape therapy since May of 2017 as well as doing stretches in many ways to help my feet and legs. The physical therapist also has me doing other things to "retrain my brain" that have helped, such as running my feet through a pan full of dried beans and using feet recognition flash cards. This has been the ONLY thing that has help reduce the pain and discomfort without taking opioids, Cymbalta (duloxetine), and Lyrica (pregabalin), among other things, over the last 6 years. I am very hopeful that the physical therapy and taping will continue to reduce the pain and discomfort.
At the same time I started the physical therapy work, I went to see a neurologist. The neurologist said my peripheral neuropathy was a level 4 and basically just wanted to treat it with more drugs and higher dosages. That has not had any effect except to make me gain more than 20 pounds and increase swelling in my fingers and hands to the point of needing relief in my hands now,
I have been being seen by a physical therapist and receiving deep needle treatments and kinesiology tape therapy since May of 2017 as well as doing stretches in many ways to help my feet and legs. The physical therapist also has me doing other things to "retrain my brain" that have helped, such as running my feet through a pan full of dried beans and using feet recognition flash cards. This has been the ONLY thing that has help reduce the pain and discomfort without taking opioids, Cymbalta (duloxetine), and Lyrica (pregabalin), among other things, over the last 6 years. I am very hopeful that the physical therapy and taping will continue to reduce the pain and discomfort.
At the same time I started the physical therapy work, I went to see a neurologist. The neurologist said my peripheral neuropathy was a level 4 and basically just wanted to treat it with more drugs and higher dosages. That has not had any effect except to make me gain more than 20 pounds and increase swelling in my fingers and hands to the point of needing relief in my hands now,
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Kevin Gentzler
Re: Neuropathy continuing / increasing post treatment?
I stopped Revlimid, Velcade, and dexamethasone (RVD) maintenance therapy in April and have slight neuropathy occasionally, whereas, when I was on maintenance, and before, my feet were bothered mostly at night.
As I hear often, everyone is different.
As I hear often, everyone is different.
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Meatwheel - Name: Brian
- When were you/they diagnosed?: August 2013
- Age at diagnosis: 64
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