Hi all,
This forum is fantastic - it doesn't make you feel so 'alone'! And there are some great tips.
I am currently on Pomalyst, Velcade, and dex combination therapy and my numbers have been holding relatively steady for a number of months.They are creeping slowly up, though. It has been virtually the only treatment that has kept my multiple myeloma under control. I also have dialysis 3x a week (it has not been smooth ride!).
I have had tingling and numbness in my lower legs and fingertips which started back in 2013 with thalidomide. Thing is, over the last 2 weeks, my legs feel like deadweights and it is becoming increasingly hard to walk. Also, the back of my legs up to my buttocks are feeling quite numb. The sensation came on suddenly overnight, lasted a few days, went away, and now it's back.
I also get excruciating cramps in hands and legs - legs mostly at night, hands during the day. Two weeks ago I started taking baclofen 10 mg for the cramps, but it doesn't seem to be working.
Are the cramps part of peripheral neuropathy or a pomalidomide-related side effect?
My question is how 'bad' can peripheral neuropathy get?
When is it time to give up something that is 'working' (Velcade) if not many options are available beyond that?
Could the heaviness in the legs be a compressed nerve? I understand I probably need an MRI to determine that, but has anyone experienced a compressed nerve versus peripheral neuropathy?
I was taking 25 mg Lyrica (pregabalin) until a couple of days ago but stopped that due to involuntary twitching.
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9 posts
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skippy - Who do you know with myeloma?: self
- When were you/they diagnosed?: Jan 2013
- Age at diagnosis: 50
Re: When to stop Velcade due to neuropathy?
My husband was taking Revlimid, Velcade, dex (RVD) for induction. He started to get peripheral neuroapthy like you described toward the end of his 6 cycles. He did stop RVD to do his auto stem cell transplant. But, his leg heaviness, weakness, pains continued. He has not been on Velcade since August. He had Velcade via a shot not IV.
Can you reduce Velcade or use Ninlaro (ixazomib)?
Can you reduce Velcade or use Ninlaro (ixazomib)?
Re: When to stop Velcade due to neuropathy?
Hi Skippy,
My husband developed peripheral neuropathy during treatment with Revlimid, Velcade, and dexamethasone (RVD), which we attributed to subcutaneous Velcade. We tried Lyrica and Neurontin (gabapentin) with no relief. Our oncologist suggested he try 20 mg of Cymbalta (duloxetine) daily. Recent research has shown it significantly reduces peripheral neuropathy. Well, I can tell you it helped immediately. We were shocked and so happy. It has improved my husband's quality of life significantly. We are so grateful our oncologist suggested this medicine.
Hope this helps. Kerri
My husband developed peripheral neuropathy during treatment with Revlimid, Velcade, and dexamethasone (RVD), which we attributed to subcutaneous Velcade. We tried Lyrica and Neurontin (gabapentin) with no relief. Our oncologist suggested he try 20 mg of Cymbalta (duloxetine) daily. Recent research has shown it significantly reduces peripheral neuropathy. Well, I can tell you it helped immediately. We were shocked and so happy. It has improved my husband's quality of life significantly. We are so grateful our oncologist suggested this medicine.
Hope this helps. Kerri
Re: When to stop Velcade due to neuropathy?
I don't have a direct answer to your question based on personal experience, but neuropathy is not something to treat lightly. My former father in law suffered from Velcade-related neuropathy, and it never went away. It seriously affected his quality of life.
In my own case, as soon as I developed the symptoms of neuropathy, my oncologist stopped the treatment until it resolved. Regardless of whether your latest heavy leg symptoms are directly related to Velcade, I think you should have a serious talk with your doctor about whether to change treatments.
In my own case, as soon as I developed the symptoms of neuropathy, my oncologist stopped the treatment until it resolved. Regardless of whether your latest heavy leg symptoms are directly related to Velcade, I think you should have a serious talk with your doctor about whether to change treatments.
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goldmine848 - Name: Andrew
- When were you/they diagnosed?: June 2013
- Age at diagnosis: 60
Re: When to stop Velcade due to neuropathy?
Is it possible that the leg cramping and the neuropathy are not related? I too am on Pomalyst and will occasionally experience pretty bad cramping in my calves at night (maybe most often at the end of a treatment cycle). Talking to my myeloma nurse, she thought it could be the Pomalyst.
Believe it or not, drinking tonic water (recommend by my cancer center nurse) seems to do the trick. I don't drink it every night, but the cramps seem to build up nightly. When I feel them coming on I will drink tonic water the next evening and the cramps stop.
Believe it or not, drinking tonic water (recommend by my cancer center nurse) seems to do the trick. I don't drink it every night, but the cramps seem to build up nightly. When I feel them coming on I will drink tonic water the next evening and the cramps stop.
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Mark Pouley - Name: Mark
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: April 2015
- Age at diagnosis: 53
Re: When to stop Velcade due to neuropathy?
Hey there Skippy,
I just started the same treatment plan as you are taking. My first was RVD. Then due to a terrible rash from 25 mg Revlimid, it changed to Velcade twice per week for two weeks with 10 days off. I still took the dex once per week. During that treatment, I achieved a complete response. But the neuropathy from the Velcade was killing my feet, ankles and down. Nowhere else. I could hardly walk without taking some Lyrica which was a great pain reliever.
My oncologist and myeloma specialist said to stop that dose of Velcade due to the nerve damage it could cause. So I was back to the RVD after a month off of everything. This time it was a maintenance level. Revlimid was 15 mg, which I could tolerate without any rash issues. All good things come to an end I guess and I was no longer in a complete response.
So with that said, I now take the Pomalyst and dex, plus Velcade weekly. I just started feeling some neuropathy again last week in my feet. Going to have to let the doc know about this. It's the Velcade in my case that causes the neuropathy. Or I should say the dose amount.
Now the dex at times makes my hands, feet, and legs cramp, usually when I am resting. It doesn't last long but comes on in a second. Sometimes it's just my hands.
The cramping I can deal with once per week, but the neuropathy is a different story. I would talk with your doc in detail about your situation. Everyone is different when it comes to reacting to these drugs. Maybe adjusting the Velcade dose would help with the neuropathy. Neuropathy is no fun, I feel for you on that one. The Pomalyst for me is fine. It's just the no food two hours before or after that takes some adjusting to.
Best of luck. Castaway
I just started the same treatment plan as you are taking. My first was RVD. Then due to a terrible rash from 25 mg Revlimid, it changed to Velcade twice per week for two weeks with 10 days off. I still took the dex once per week. During that treatment, I achieved a complete response. But the neuropathy from the Velcade was killing my feet, ankles and down. Nowhere else. I could hardly walk without taking some Lyrica which was a great pain reliever.
My oncologist and myeloma specialist said to stop that dose of Velcade due to the nerve damage it could cause. So I was back to the RVD after a month off of everything. This time it was a maintenance level. Revlimid was 15 mg, which I could tolerate without any rash issues. All good things come to an end I guess and I was no longer in a complete response.
So with that said, I now take the Pomalyst and dex, plus Velcade weekly. I just started feeling some neuropathy again last week in my feet. Going to have to let the doc know about this. It's the Velcade in my case that causes the neuropathy. Or I should say the dose amount.
Now the dex at times makes my hands, feet, and legs cramp, usually when I am resting. It doesn't last long but comes on in a second. Sometimes it's just my hands.
The cramping I can deal with once per week, but the neuropathy is a different story. I would talk with your doc in detail about your situation. Everyone is different when it comes to reacting to these drugs. Maybe adjusting the Velcade dose would help with the neuropathy. Neuropathy is no fun, I feel for you on that one. The Pomalyst for me is fine. It's just the no food two hours before or after that takes some adjusting to.
Best of luck. Castaway
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Castaway - Name: George
- Who do you know with myeloma?: just myself
- When were you/they diagnosed?: 1/24/14
- Age at diagnosis: 62
Re: When to stop Velcade due to neuropathy?
When I was on Cytoxan, Velcade, and dex (CyBorD) a year ago during induction treatment, I had mild neuropathy in my fingers and toes. When I stopped that regimen to prepare for my autologous stem cell transplant, the neuropathy went away.
In March of this year, I started Velcade every two weeks as maintenance therapy, and the numbness in my toes returned, but it is very mild. My oncologist and I talk about it every week before I get my injection and decide whether to continue the Velcade or change to the new drug Ninlaro (ixazomib), which is similar but supposedly not as likely to cause neuropathy.
I think the important point is the regular, frank discussions with my doctor.
In March of this year, I started Velcade every two weeks as maintenance therapy, and the numbness in my toes returned, but it is very mild. My oncologist and I talk about it every week before I get my injection and decide whether to continue the Velcade or change to the new drug Ninlaro (ixazomib), which is similar but supposedly not as likely to cause neuropathy.
I think the important point is the regular, frank discussions with my doctor.
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Gary D - Name: Gary D
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: April 2015
- Age at diagnosis: 67
Re: When to stop Velcade due to neuropathy?
Spoke to the professor today. Apparently if neuropathy comes on suddenly and intensely it can lead to paralysis. Scary. In my case, it had been a gradual onset for months, but it got markedly worse a few weeks ago with the leg heaviness and weakness, and numbness up to the buttocks.
Has anyone got to this point or even heard of that? Is it reversible?
Has anyone got to this point or even heard of that? Is it reversible?
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skippy - Who do you know with myeloma?: self
- When were you/they diagnosed?: Jan 2013
- Age at diagnosis: 50
Re: When to stop Velcade due to neuropathy?
I can only tell you of my personal experience.
When I was first hospitalized with renal failure 3 months before my myeloma diagnosis, I quickly developed symptoms of severe bilateral carpal tunnel syndrome. A few months later, I had carpal tunnel and trigger finger surgery on one hand. I had physical therapy and it got a little better.
After stopping Velcade a few months later, both hands have improved equally. My fingers are still numb but my hands are functional. The doctor doesn't feel that they'll ever come back. I can live with that.
Wishing you the best.
When I was first hospitalized with renal failure 3 months before my myeloma diagnosis, I quickly developed symptoms of severe bilateral carpal tunnel syndrome. A few months later, I had carpal tunnel and trigger finger surgery on one hand. I had physical therapy and it got a little better.
After stopping Velcade a few months later, both hands have improved equally. My fingers are still numb but my hands are functional. The doctor doesn't feel that they'll ever come back. I can live with that.
Wishing you the best.
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Danleb - Name: Danleb Daniel Lebenstein
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: March 2015
- Age at diagnosis: 59
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