My myeloma has relapsed and I am searching for a treatment that will not make my severe peripheral neuropathy worse. I have the p53 deletion and so I cannot take melphalan, and Velcade was the cause of my neuropathy, so it is out of consideration. Pomalyst drove my nerves through the roof after four days and I had to discontinue that. All that is left is Kyprolis, for which I have been approved by my insurance company.
Here is the problem: Two myeloma experts from two different clinics I consulted told me they never had anyone experience neuropathy on Kyprolis. A nurse who was part of a clinical trial for Kyprolis told me that a man in the trial with severe peripheral neuropathy never complained of an increase in neuropathy over the year the trial ran. But the two general oncologists where I live who are involved in my treatment have said that Kyprolis will cause me more nerve damage. One of these two also says it is unlikely to do any good, either.
The two experts have recommended that I try it for one cycle (a month) and see what happens.
What can any of you tell me about your experience with Kyprolis and neuropathy -- or any other serious side effect of the drug?
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Re: Kyprolis and peripheral neuropathy
Hello Premonition,
My husband's situation was a little different than yours in that, when he was newly diagnosed with multiple myeloma (May 2011), he started in a clinical trial of Kyprolis / Revlimid / dex at the University of Michigan. During the course of his infusions over a 24 month period, he gradually developed neuropathy in his feet. His has not been the burning / painful kind, instead an increasing numbness.
I think his neuropathy is caused by the Revlimid, because it persists to this day and he's been only taking Revlimid maintenance for over a year now. His oncologist / hematologist had him stop the Revlimid for a month to see if it improved, and it was slowly starting to reverse by the end of the month. So, he's taking a lower dose now in hopes his neuropathy does not worsen. The lower dose definitely helped improve his energy levels.
My husband has had lifelong asthma and felt his breathing worsened when taking the Kyprolis. He saw a U-M pulmonologist, had a battery of lung function tests, and his asthma medicines were tweaked a little. My husband did not think his breathing improved to pre-Kyprolis, but, on the other hand, it was not bad enough to have to stop the Kyprolis, either.
I believe I read cardiac problems could be caused by Kyprolis, but I don't recall that it was a frequent side effect. I think the breathing issues were more often reported, at least anecdotally by other men my husband talked to in the same clinical trial. Now that he has been off the Kyprolis, his breathing HAS returned to his normal levels as before with his asthma.
He had two M-spikes done at 2 different labs initially before starting treatment. One was 5.1 and the other was 4.9. There was 83-85% involvement in his bone marrow. He responded very quickly to the Kyprolis and at the end of 24 months, his M protein was detectable but too small to measure. Then about 6 months later, while on the maintenance Revlimid, there finally was no M-protein in any of his tests. At his checkup last month, there was still no M-protein anywhere. I believe in 2015 results will be published on this clinical trial; we are very anxious to see the results!
If you decide to try Kyprolis, I hope that it works as well for you as it did for my husband.
Best wishes,
Chris M.
My husband's situation was a little different than yours in that, when he was newly diagnosed with multiple myeloma (May 2011), he started in a clinical trial of Kyprolis / Revlimid / dex at the University of Michigan. During the course of his infusions over a 24 month period, he gradually developed neuropathy in his feet. His has not been the burning / painful kind, instead an increasing numbness.
I think his neuropathy is caused by the Revlimid, because it persists to this day and he's been only taking Revlimid maintenance for over a year now. His oncologist / hematologist had him stop the Revlimid for a month to see if it improved, and it was slowly starting to reverse by the end of the month. So, he's taking a lower dose now in hopes his neuropathy does not worsen. The lower dose definitely helped improve his energy levels.
My husband has had lifelong asthma and felt his breathing worsened when taking the Kyprolis. He saw a U-M pulmonologist, had a battery of lung function tests, and his asthma medicines were tweaked a little. My husband did not think his breathing improved to pre-Kyprolis, but, on the other hand, it was not bad enough to have to stop the Kyprolis, either.
I believe I read cardiac problems could be caused by Kyprolis, but I don't recall that it was a frequent side effect. I think the breathing issues were more often reported, at least anecdotally by other men my husband talked to in the same clinical trial. Now that he has been off the Kyprolis, his breathing HAS returned to his normal levels as before with his asthma.
He had two M-spikes done at 2 different labs initially before starting treatment. One was 5.1 and the other was 4.9. There was 83-85% involvement in his bone marrow. He responded very quickly to the Kyprolis and at the end of 24 months, his M protein was detectable but too small to measure. Then about 6 months later, while on the maintenance Revlimid, there finally was no M-protein in any of his tests. At his checkup last month, there was still no M-protein anywhere. I believe in 2015 results will be published on this clinical trial; we are very anxious to see the results!
If you decide to try Kyprolis, I hope that it works as well for you as it did for my husband.
Best wishes,
Chris M.
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Chris M.
Re: Kyprolis and peripheral neuropathy
Chris,
Thank you for the good wishes! I am glad the Kyprolis has worked so well for your husband. His story is encouraging. I, too, have recurrent asthma bouts (apparently, if asthma goes away in youthm it re-emerges in old age) so I will be looking out for that problem if -- most likely, when -- I start the Kyprolis.
The Revlimid probably was the cause of his neuropathy. I'm glad it is reversing; often it will if the dosages are not too high and are adjusted when it first sets in.
I wish you both the best!
Premonition
Thank you for the good wishes! I am glad the Kyprolis has worked so well for your husband. His story is encouraging. I, too, have recurrent asthma bouts (apparently, if asthma goes away in youthm it re-emerges in old age) so I will be looking out for that problem if -- most likely, when -- I start the Kyprolis.
The Revlimid probably was the cause of his neuropathy. I'm glad it is reversing; often it will if the dosages are not too high and are adjusted when it first sets in.
I wish you both the best!
Premonition
Re: Kyprolis and peripheral neuropathy
Hello Premonition,
We have extensive experience with Kyprolis at our center by virtue of participating in a number of the trials that led to its development. We have continued to use the drug frequently since its release.
The likelihood of Kyprolis making your neuropathy worse is very low. In a major study (266 patients with relapsed/refractory myeloma) of Kyprolis leading to its approval, 12.4% of patients had new neuropathy or exacerbation of their pre-existing neuropathy. Severe (grade 3) neuropathy occurred in only 1.1% of patients.
In your situation, combinations of Kyprolis with other drugs may offer the most benefit. I am glad you are seeing myeloma experts, as they will be able to give you the best information available. I wish you the best of luck in your battle with myeloma and hope that new drugs become available for you soon.
We have extensive experience with Kyprolis at our center by virtue of participating in a number of the trials that led to its development. We have continued to use the drug frequently since its release.
The likelihood of Kyprolis making your neuropathy worse is very low. In a major study (266 patients with relapsed/refractory myeloma) of Kyprolis leading to its approval, 12.4% of patients had new neuropathy or exacerbation of their pre-existing neuropathy. Severe (grade 3) neuropathy occurred in only 1.1% of patients.
In your situation, combinations of Kyprolis with other drugs may offer the most benefit. I am glad you are seeing myeloma experts, as they will be able to give you the best information available. I wish you the best of luck in your battle with myeloma and hope that new drugs become available for you soon.
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Dr. Edward Libby - Name: Edward Libby, M.D.
Beacon Medical Advisor
Re: Kyprolis and peripheral neuropathy
My mom had grade 3 neuropathy (including muscle atrophy and severe weakness) with Velcade three years ago and had to discontinue its use. Her Stage 3 multiple myeloma was somewhat in remission, so we played a wait-and-see game.
20 months later, her M-spike started creeping up, and her doctor recommended she begin treatment again. At that time she moved in with me and care was transferred to Sarah Cannon in Nashville, TN. After 7 months of Revlimid, she had a stroke. At that point she said no more treatment and we watched her numbers gradually creep up and her blood counts dropped to the point of needing a blood transfusion.
She has now agreed to treatment and began Kyprolis last week. Did great until day 7, when neuropathy symptoms she hasn't experienced in a very long time returned. Did treatment on day 8, followed by more neuropathy symptoms, including leg jerking. Felt much better on day 9, but after speaking with staff, who consulted physician, they elected to withhold the Kyprolis until next week.
Has anyone else had this kind of reaction?
Also, has anyone had IViG treatment for their neuropathy? I'm not so sure my mom doesn't have some motor neuropathy along with the PN.
20 months later, her M-spike started creeping up, and her doctor recommended she begin treatment again. At that time she moved in with me and care was transferred to Sarah Cannon in Nashville, TN. After 7 months of Revlimid, she had a stroke. At that point she said no more treatment and we watched her numbers gradually creep up and her blood counts dropped to the point of needing a blood transfusion.
She has now agreed to treatment and began Kyprolis last week. Did great until day 7, when neuropathy symptoms she hasn't experienced in a very long time returned. Did treatment on day 8, followed by more neuropathy symptoms, including leg jerking. Felt much better on day 9, but after speaking with staff, who consulted physician, they elected to withhold the Kyprolis until next week.
Has anyone else had this kind of reaction?
Also, has anyone had IViG treatment for their neuropathy? I'm not so sure my mom doesn't have some motor neuropathy along with the PN.
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EHester
Re: Kyprolis and peripheral neuropathy
After 7 cycles of Revlimid, Velcade, and dex (RVD), I began to develop PN. After my failed ASCT, my PN progressed quickly to a level requiring me to use a walker. I developed demyelination of the motor nerves in my leg and I was unable to walk or put any weight on my legs. My neurologist ordered IVIG treatments and the recovery has been remarkable. Over 6 months, I progressed from a walker to a cane, and now I require no assistance.
As far as I'm concerned IVIG was a miracle treatment. I still have PN in my feet and lower legs, but it is much improved and tolerable. I am currently in my 7th cycle of Kyprolis and I have not experienced any change in my PN. I tolerate Kyprolis extremely well, the only side effect being some fatigue. My myeloma numbers have declined and I have plateaued.
As far as I'm concerned IVIG was a miracle treatment. I still have PN in my feet and lower legs, but it is much improved and tolerable. I am currently in my 7th cycle of Kyprolis and I have not experienced any change in my PN. I tolerate Kyprolis extremely well, the only side effect being some fatigue. My myeloma numbers have declined and I have plateaued.
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Dano - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Jan 2014
- Age at diagnosis: 65
Re: Kyprolis and peripheral neuropathy
Great to hear that your PN is doing much better, Dano. I remember some of your earlier postings about how much of a challenge the PN was creating for you. It's amazing that things have improved as much as they have. I guess IVIG can make a real difference.
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JimNY
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