My husband, aged 77, was diagnosed with Stage 1 myeloma 9 months ago and was treated initially with 2 cycles of melphalan, prendisolone and thalidomide, which only brought his paraprotein level down from 33 at diagnosis to 11, and then the level started to rise again so treatment was stopped for 6 weeks.
He then had 2 cycles of 1 subcutaneous injection of Velcade per week for 4 weeks followed by a week off - 8 injections in all. He then had 2 weeks of 2 intravenous Velcade injections per week, followed by a week off - 4 intravenous injections in all.
He got ill exactly 2 weeks after the last injection and over the course of the next two weeks he developed such severe peripheral neuropathy that he is now unable to walk and is in a wheelchair, and we are told the neuropathy may last weeks or months, or it may be permanent. Four weeks ago he was playing two rounds of golf a week - now he is disabled.
If anyone else has experienced this extreme reaction, please can they say how long they took to recover and if there is anything that can be done to speed recovery.
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Re: Severe peripheral neuropathy from Velcade
I would be interested in knowing if your spouse had any symptoms of multiple myeloma before he started treatment. I am about his age & am suppose to start treatment in a few weeks but I have no symptoms yet so I keep putting it off. I am supposed to have the same meds as your hubby --Velcade & melphalan & prednisone.
I have had the neuropathy before & am scared of getting it again. It is no fun. I guess, at this point, I am more scarred of the drugs than the disease, but I know when I get symptoms, I'll change my mind.
Best wishes to you & your husband.
I have had the neuropathy before & am scared of getting it again. It is no fun. I guess, at this point, I am more scarred of the drugs than the disease, but I know when I get symptoms, I'll change my mind.
Best wishes to you & your husband.
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barbara1200 - Name: barb
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2013
- Age at diagnosis: 75
Re: Severe peripheral neuropathy from Velcade
Beverly I just wanted to add that I know of several people who have had neuropathy & have gotten over it. They have several drugs out to help you with this condition. I took Lyrica when I had it & it took me a while but I recovered completely from it.
Hang in there & stay tough. Best wishes.
Hang in there & stay tough. Best wishes.
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barbara1200 - Name: barb
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2013
- Age at diagnosis: 75
Re: Severe peripheral neuropathy from Velcade
I had severe neuropathy from Velcade in 2011 that required it to be stopped. I had developed a severe orthostatic blood pressure condition from peripheral nerve damage that came on suddenly, in about two weeks’ time. Is this what happened to your husband?
I was not paralyzed or anything like that. When I stood up, the nerves in the legs that would normally cause the muscles that surround blood vessels to contract and squeeze the blood vessels to prevent blood rushing to the legs stopped responding. My blood pressure would plummet when I stood up causing me to black out. I was fine sitting or lying down.
I was hospitalized for about a week while they ran a battery of tests to determine the cause of the orthostatic blood pressure and rule out other potential causes. It was not certain with me either if the orthostatic condition would be permanent. After stopping Velcade slowly over the next few weeks the orthostatic blood pressure condition gradually went away. A year after this happened I did a 18 mile round trip hike to the top of Half Dome in Yosemite Valley, so a fully recovery is possible.
The vast majority of people do not develop an orthostatic blood pressure from Velcade but if you’re the one that is not very comforting. Velcade however was really effective in treating my myeloma. Just a few days after being diagnosed with myeloma I was admitted to the hospital for kidney failure due to high calcium from myeloma bone damage. It was uncertain then if my kidneys would recover or if I would go on dialysis for the rest of my life. Between the Aredia and Velcade that was administered right away, the myeloma was gotten under control quickly and the Aredia reduced my calcium levels.
It can be a love hate relationship with these drugs. I am pretty certain I would be dead now without Velcade but today there are probably a number of other drugs that equally effective with less risk of neuropathy. The myeloma specialist would know more about that.
I was not paralyzed or anything like that. When I stood up, the nerves in the legs that would normally cause the muscles that surround blood vessels to contract and squeeze the blood vessels to prevent blood rushing to the legs stopped responding. My blood pressure would plummet when I stood up causing me to black out. I was fine sitting or lying down.
I was hospitalized for about a week while they ran a battery of tests to determine the cause of the orthostatic blood pressure and rule out other potential causes. It was not certain with me either if the orthostatic condition would be permanent. After stopping Velcade slowly over the next few weeks the orthostatic blood pressure condition gradually went away. A year after this happened I did a 18 mile round trip hike to the top of Half Dome in Yosemite Valley, so a fully recovery is possible.
The vast majority of people do not develop an orthostatic blood pressure from Velcade but if you’re the one that is not very comforting. Velcade however was really effective in treating my myeloma. Just a few days after being diagnosed with myeloma I was admitted to the hospital for kidney failure due to high calcium from myeloma bone damage. It was uncertain then if my kidneys would recover or if I would go on dialysis for the rest of my life. Between the Aredia and Velcade that was administered right away, the myeloma was gotten under control quickly and the Aredia reduced my calcium levels.
It can be a love hate relationship with these drugs. I am pretty certain I would be dead now without Velcade but today there are probably a number of other drugs that equally effective with less risk of neuropathy. The myeloma specialist would know more about that.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: Severe peripheral neuropathy from Velcade
I had a mild to moderate intermediate neuropathy of my feet almost 2 years before my diagnosis. I have been taking R-Alpha lipoic acid ( 200 mg three times a day) and N-Acetyl Cysteine ( 500 mg once a day).
Alpha lipoic acid has been used for years particularly in Europe for diabetic neuropathy with success in some but not all patients. N-acetyl cysteine has been shown in the laboratory to protect nerve cells.
It should be noted that there are several papers saying that these supplements may interfere with Velcade's effect, so they should not be taken on the day of Velcade.
The myeloma clinic in Los Angeles prescribes as much as 1,800 mg a day of ALA to some patients.
Hope this helps
Alpha lipoic acid has been used for years particularly in Europe for diabetic neuropathy with success in some but not all patients. N-acetyl cysteine has been shown in the laboratory to protect nerve cells.
It should be noted that there are several papers saying that these supplements may interfere with Velcade's effect, so they should not be taken on the day of Velcade.
The myeloma clinic in Los Angeles prescribes as much as 1,800 mg a day of ALA to some patients.
Hope this helps
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fetalsono - Age at diagnosis: 66
Re: Severe peripheral neuropathy from Velcade
Thanks to all who replied. It's heartening to hear that these side effects from Velcade do abate in time. Just looking forward to the time when my husband is able to walk again. Any tips on things that might help from anyone would be welcome.
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BeverlyM
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