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Kyprolis - side effects & treatment outcomes?
My recent stem cell transplant failed. My induction therapy with Revlimid, dex and Velcade gave me a partial response prior to ASCT, however the Velcade resulted in severe neuropathy and other neurological issues. My doctor will soon start me on Kyprolis and dex. The side effect profile for Kyprolis is extensive. Which side effects are most common, and what sort of treatment outcomes can be expected?
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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 - side effects & treatment outcomes?
My husband is currently on Kyprolis, Cytoxan and dex and is tolerating it very well -- a lot better than Revlimid, Velcade, and dex. Yeah he feels blah for a day or two after, but quickly rebounds and, best of all .,, HIS LIGHT CHAINS ARE GOING DOWN!!
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Melanie - Name: Melanie
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: July 2014
- Age at diagnosis: 54
Re: Kyprolis - side effects & treatment outcomes?
Thank you Melanie for that information. I start the infusions on Thursday.
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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 - side effects & treatment outcomes?
Good Luck Dano. Hope this works for you. I will keep you in my thoughts.
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Melanie - Name: Melanie
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: July 2014
- Age at diagnosis: 54
Re: Kyprolis - side effects & treatment outcomes?
My husband was on Kyprolis, dex and Pomalyst (pomalidomide, Imnovid) for 10 months. His light chains went down dramatically at first. The side effects were tolerable: mostly constipation, fatigue, and low blood counts for him.
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hayfarmer
Re: Kyprolis - side effects & treatment outcomes?
I just finished my first cycle of carfilzomib (Krypolis) / Revlimid / dex, and I think, overall, the side effects are less than with Velcade / Revlimid / dex. I still have fatigue, but it's a little better. My crazy alternating constipation and diarrhea have settled down. So, overall, better!
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Tracy J - Name: Tracy Jalbuena
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2014
- Age at diagnosis: 42
Re: Kyprolis - side effects & treatment outcomes?
My husband underwent a transplant in 2012 and was put on Revlimid and then Velcade as maintenance and had to stop because of neuropathy and blood clots.
He has been on just dex since the fall of 2013 and now has relapsed, so we are also interested in others' experience with Krypolis. Revlimid and Velcade are no longer an option for him due to the side effects.
He has been on just dex since the fall of 2013 and now has relapsed, so we are also interested in others' experience with Krypolis. Revlimid and Velcade are no longer an option for him due to the side effects.
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4TG8
Re: Kyprolis - side effects & treatment outcomes?
Thanks for all the responses on Kyprolis and I hope we hear from others as well.
I had my first infusion yesterday afternoon, so it's probably a little early to report on side effects at this time. I will continue to post as I go forward with Kyprolis treatment and I hope to hear from others regarding side effects and outcomes.
I had my first infusion yesterday afternoon, so it's probably a little early to report on side effects at this time. I will continue to post as I go forward with Kyprolis treatment and I hope to hear from others regarding side effects and outcomes.
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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 - side effects & treatment outcomes?
Starting in March 2011, I had three months of treatment with Kyprolis and dex. In June 2011, I started on once-a-month maintenance with two infusions of Kyprolis and dex, and in June 2012, I began once every six weeks infusions. This regimen continues; I remain in near CR.
My side effects at the beginning were mostly respiratory, like a major cold after each two infusions, which diminished over time. My nose drips on a continuous basis – not much, but necessitating a handy supply of tissues. There is typically one day post infusions where I am whacked – out of the ordinary fatigue and grounded. I feel as if I have been run over by a semi truck on day three or four.
If anyone is having troublesome side effects after infusions, consider asking your doctor to approve Kyprolis infusions over a 30 minute period rather than the 10 minutes on the "directions." This has made all the difference in the world for my side effects and well being. [As a snowbird, I have infusions where there is warmth and sunshine – and nurse error with a 10 minute infusion –and I suffered all last week as a result. Yes, two times I checked that 30 minutes would be honored, but I forgot that last check as Kyprolis was dripping in.]
My side effects at the beginning were mostly respiratory, like a major cold after each two infusions, which diminished over time. My nose drips on a continuous basis – not much, but necessitating a handy supply of tissues. There is typically one day post infusions where I am whacked – out of the ordinary fatigue and grounded. I feel as if I have been run over by a semi truck on day three or four.
If anyone is having troublesome side effects after infusions, consider asking your doctor to approve Kyprolis infusions over a 30 minute period rather than the 10 minutes on the "directions." This has made all the difference in the world for my side effects and well being. [As a snowbird, I have infusions where there is warmth and sunshine – and nurse error with a 10 minute infusion –and I suffered all last week as a result. Yes, two times I checked that 30 minutes would be honored, but I forgot that last check as Kyprolis was dripping in.]
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Barbarah - Name: Barbarah
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 11-2008
- Age at diagnosis: 66
Re: Kyprolis - side effects & treatment outcomes?
My husband is on Kyprolis, Pomalyst and dex, 3 weeks on, 1 week off. This has been since October.
The Kyprolis has caused him pretty significant shortness of breath, and decreased blood counts (Hgb, WBC, RBC). He has had several transfusions.
Beginning this month, his doctor has decreased the frequency to every other week treatment to see if this will decrease the bothersome side effects he is having. Based on the schedule he takes the different meds, he has determined that it is the Kyprolis causing his shortness of breath (difficulty climbing stairs, etc), not the Pomalyst.
Other than myeloma, he is a very healthy guy.
The Kyprolis has caused him pretty significant shortness of breath, and decreased blood counts (Hgb, WBC, RBC). He has had several transfusions.
Beginning this month, his doctor has decreased the frequency to every other week treatment to see if this will decrease the bothersome side effects he is having. Based on the schedule he takes the different meds, he has determined that it is the Kyprolis causing his shortness of breath (difficulty climbing stairs, etc), not the Pomalyst.
Other than myeloma, he is a very healthy guy.
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rumnting - Who do you know with myeloma?: husband
- When were you/they diagnosed?: 4/9/11
- Age at diagnosis: 54
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