My husband has been diagnosed with multiple myeloma and is currently undergoing his second cycle of treatment - Velcade, dexamethasone, Endoxan (cyclophosphamide, Cytoxan) and monthly infusions of Zometa. (I note that this is primarily an American website and we are located in Australia, so I'm not sure if the drug names are the same.)
Coincidental with the commencement of treatment has been his ongoing experience of bone and joint pain that is principally localised in his knees, ankles, shins and occasionally his hips. His haematologist has gradually withdrawn the drugs separately and it looks like the Velcade is responsible for his leg pain. He is currently being treated for the pain with slow-release opiates.
The haematologist also suggests that his leg pain is an unusual side effect of Velcade. I'm wondering if any other multiple myeloma sufferers have experienced bone / joint pain as a result of their treatment. I'd be grateful to hear of others' experiences.
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Re: Leg pain from Velcade
Hi,
Velcade does cause peripheral neuropathy. His pain sounds a little more widespread then what you typically see. Here in the States they often treat that with gabapentin (Neurontin) or Lyrica (pregabalin), and sometimes Cymbalta (duloxetine).
I'm sure you'll get some other replies that may give you some other ideas as to the cause of the more widespread pain. Hope this helps a little!
Velcade does cause peripheral neuropathy. His pain sounds a little more widespread then what you typically see. Here in the States they often treat that with gabapentin (Neurontin) or Lyrica (pregabalin), and sometimes Cymbalta (duloxetine).
I'm sure you'll get some other replies that may give you some other ideas as to the cause of the more widespread pain. Hope this helps a little!
Re: Leg pain from Velcade
HI Vicki:
A couple of comments that I will add to Cindy's comments, which I second 100%. In the US and other regions, there is a "grading" system for peripheral neuropathy. In most cases, they will stick with the treatment (in this case Velcade) for grade 0, 1, or 2. For grade 3 or 4, they will tone down or alter the treatment, so have this side effect "graded" so you have an idea of what is normal. As you might guess, grade 0 is occasional and low intensity, grade 4 is constant and can't stand it.
Second, I have posted on this before, for grade 0 or 1, a lot of people have reported relief from application of cocoa butter. My wife had grade 0 and 1, and by various experiments, she was able to say definitively that it relieved the peripheral neuropathy when it came on, and in fact delayed the onset of peripheral neuropathy, and reduced its intensity when it came (applying cocoa butter before it kicked in). In the States, the most available brand is Palmers, in most drug stores over the counter. In the case of my wife, it was one less med she had to take, and the peripheral neuropathy meds, worth it of course if needed, have their own side effects, so its a little bit better if you can treat it with the cocoa butter.
Good luck
A couple of comments that I will add to Cindy's comments, which I second 100%. In the US and other regions, there is a "grading" system for peripheral neuropathy. In most cases, they will stick with the treatment (in this case Velcade) for grade 0, 1, or 2. For grade 3 or 4, they will tone down or alter the treatment, so have this side effect "graded" so you have an idea of what is normal. As you might guess, grade 0 is occasional and low intensity, grade 4 is constant and can't stand it.
Second, I have posted on this before, for grade 0 or 1, a lot of people have reported relief from application of cocoa butter. My wife had grade 0 and 1, and by various experiments, she was able to say definitively that it relieved the peripheral neuropathy when it came on, and in fact delayed the onset of peripheral neuropathy, and reduced its intensity when it came (applying cocoa butter before it kicked in). In the States, the most available brand is Palmers, in most drug stores over the counter. In the case of my wife, it was one less med she had to take, and the peripheral neuropathy meds, worth it of course if needed, have their own side effects, so its a little bit better if you can treat it with the cocoa butter.
Good luck
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JPC - Name: JPC
Re: Leg pain from Velcade
Vicki,
I'm sure neuropathy presents itself in many forms. The previous posts suggest some viable treatment options. My neuropathy started at the longest nerves from the spinal column in my hands and feet. I have severe loss of feeling, but just occasional pain (shooting pain in various parts of the leg, but not joints).
However, you described more joint and bone pain, that sounds more like arthritis, which I fortunately haven't had a visit from. That doesn't really help you now, does it?
Good Luck
I'm sure neuropathy presents itself in many forms. The previous posts suggest some viable treatment options. My neuropathy started at the longest nerves from the spinal column in my hands and feet. I have severe loss of feeling, but just occasional pain (shooting pain in various parts of the leg, but not joints).
However, you described more joint and bone pain, that sounds more like arthritis, which I fortunately haven't had a visit from. That doesn't really help you now, does it?
Good Luck
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blueblood - Name: Craig
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: March 2014
- Age at diagnosis: 54
Re: Leg pain from Velcade
My dad is having the Velcade leg pains today fairly bad.
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Little Monkey - Name: Little Monkey
- Who do you know with myeloma?: Father-stage 1 multiple myeloma
- When were you/they diagnosed?: March/April of 2015
Re: Leg pain from Velcade
My husband started to get bad leg pain towards the end of his induction, which included Revlimid, Velcade, and dex. They lasted for quite a while even though he was done with the Velcade treatment.
He did have a stem cell transplant after Velcade discontinued. It took about 9 months after his Velcade treatment ended for leg pain to go away.
He did have a stem cell transplant after Velcade discontinued. It took about 9 months after his Velcade treatment ended for leg pain to go away.
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