Does anyone here have first hand experience with Kyprolis (carfilzomib) as first-line therapy, or after RVD [Revlimid-Velcade-dexamethasone] as first-line therapy?
Thank you from my heart.
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Re: Anyone with experience with Kyprolis (carfilzomib)?
Hi Hope22,
My husband started with Kyprolis along with Revlimid and dexamethasone last year as a first line therapy. He had four cycles of treatment, and then prepared for a stem cell transplant, which he had in the fall. He had a very good response to the first two cycles of treatment followed by just holding steady the last two cycles.
The good part is that he didn't have, and still doesn't have, much if any real neuropathy, even after the transplant. The hard part was the two days of infusion each week. He also had a really difficult time with his veins being able to handle the infusions. In hindsight, he might have considered a port.
Best of luck to you!
My husband started with Kyprolis along with Revlimid and dexamethasone last year as a first line therapy. He had four cycles of treatment, and then prepared for a stem cell transplant, which he had in the fall. He had a very good response to the first two cycles of treatment followed by just holding steady the last two cycles.
The good part is that he didn't have, and still doesn't have, much if any real neuropathy, even after the transplant. The hard part was the two days of infusion each week. He also had a really difficult time with his veins being able to handle the infusions. In hindsight, he might have considered a port.
Best of luck to you!
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Matt's wife
Re: Anyone with experience with Kyprolis (carfilzomib)?
Hi,
When my husband was first diagnosed almost 3 years ago, his M spike was either 5.1 or 4.9 depending on the lab. He had one bone marrow biopsy (BMB) from the initial oncologist who diagnosed him, and a second about a month later when he first saw the myeloma specialists at the University of Michigan, but had had no treatment yet.
He began a Phase III clinical study taking carfilzomib [Kyprolis], Revlimid and dexamethasone and was on the combination for a total of 24 months. His M spike dropped dramatically the first few months and he was VGPR by the fourth month. Around the sixth month, his M spike continued to drop, but more slowly. From approximately 18 months to 24 months, it stayed at 0.1.
He was then put on just Revlimid and, finally about 3 months after that, he reached 0.0 and has remained there since then. He had another BMB and flow cytometry and neither one showed any monoclonal plasma cells. He also has had a normal FLC ratio, so I think he is considered to have a SCR.
During this time he's had almost all the complications that multiple myeloma patients often experience. On the other hand, he's continued to work (except when having infusions or bad infections). And he does all the things he used to, like hunting, yard work, honey-do lists...
Best wishes to you.
Chris M
When my husband was first diagnosed almost 3 years ago, his M spike was either 5.1 or 4.9 depending on the lab. He had one bone marrow biopsy (BMB) from the initial oncologist who diagnosed him, and a second about a month later when he first saw the myeloma specialists at the University of Michigan, but had had no treatment yet.
He began a Phase III clinical study taking carfilzomib [Kyprolis], Revlimid and dexamethasone and was on the combination for a total of 24 months. His M spike dropped dramatically the first few months and he was VGPR by the fourth month. Around the sixth month, his M spike continued to drop, but more slowly. From approximately 18 months to 24 months, it stayed at 0.1.
He was then put on just Revlimid and, finally about 3 months after that, he reached 0.0 and has remained there since then. He had another BMB and flow cytometry and neither one showed any monoclonal plasma cells. He also has had a normal FLC ratio, so I think he is considered to have a SCR.
During this time he's had almost all the complications that multiple myeloma patients often experience. On the other hand, he's continued to work (except when having infusions or bad infections). And he does all the things he used to, like hunting, yard work, honey-do lists...
Best wishes to you.
Chris M
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Chris M
Re: Anyone with experience with Kyprolis (carfilzomib)?
Thank you very much for your answers. Chris, did your husband ever get a stem cell transplant?
Gratefully, hope22
Gratefully, hope22
Re: Anyone with experience with Kyprolis (carfilzomib)?
Hi,
No, my husband elected to delay transplant. He had his stem cells collected and they're in storage at the University of Michigan. He really didn't want to have a transplant unless there were no other options, and the doctors felt it was reasonable since he was responding so well to the carfilzomib.
I know there are many different opinions as to the timing of transplants and it's unique to each patient for a variety of reasons. So far, things are going well for him right now.
I hope everything goes well for you, too.
Chris M.
No, my husband elected to delay transplant. He had his stem cells collected and they're in storage at the University of Michigan. He really didn't want to have a transplant unless there were no other options, and the doctors felt it was reasonable since he was responding so well to the carfilzomib.
I know there are many different opinions as to the timing of transplants and it's unique to each patient for a variety of reasons. So far, things are going well for him right now.
I hope everything goes well for you, too.
Chris M.
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Chris M
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