Today I finally got some good news.
After two cycles on carfilzomib (Kyprolis) and dex my kappa light chains have dropped from 235 mg/dL to 53 mg/dL. This is after failing to respond to both lenalidomide (Revlimid) and bortezomib (Velcade).
I feel so relieved. The challenge for me now is not to overreact, since it is still early days for this treatment. But there is no elixir like hope, and now I have some of that.
I wanted to share this news with the wonderful folks on this incredible site who have patiently answered my questions, shared their experiences, and given me advice. Thank you all!
Forums
8 posts
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MrPotatohead - Name: MrPotatohead
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: March, 2015
- Age at diagnosis: 65
Re: Response to Kyprolis (carfilzomib)
MrP,
That's wonderful news! Thanks for sharing the news, and congratulations on the response you've gotten to the Kyprolis. I hope those kappa free light chains continue to drop and then level out in the normal range.
Good luck!
That's wonderful news! Thanks for sharing the news, and congratulations on the response you've gotten to the Kyprolis. I hope those kappa free light chains continue to drop and then level out in the normal range.
Good luck!
Re: Response to Kyprolis (carfilzomib)
Mr. PH: Congratulations, and I hope to hear of more good news from you in the future.
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JPC - Name: JPC
Re: Response to Kyprolis (carfilzomib)
Thank you, Cheryl G and JPC!
This news came at just the right time, as I was feeling so discouraged. Now there is a ray of hope, and that makes such a difference.
This news came at just the right time, as I was feeling so discouraged. Now there is a ray of hope, and that makes such a difference.
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MrPotatohead - Name: MrPotatohead
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: March, 2015
- Age at diagnosis: 65
Re: Response to Kyprolis (carfilzomib)
Hi MrPotatoHead,
Thanks for sharing your latest test results. That's great news.
I want to follow up on one thing you said, probably off-hand: "The challenge for me now is to not over-react." I hear you on that one!
Even after over 2 1/2 years of treatment and over 6 years since originally being diagnosed with MGUS, this is a problem for me. I have to remind myself that dealing with myeloma is a marathon, not a sprint. So don't get too thrilled with one good test result or too upset by one not-so-good result. Try to keep plugging along at a steady (mental) state.
Easy to say, but not so easy to do.
That said, congratulations on your latest test result. I'm rooting for more of the same for you!
Mike
Thanks for sharing your latest test results. That's great news.
I want to follow up on one thing you said, probably off-hand: "The challenge for me now is to not over-react." I hear you on that one!
Even after over 2 1/2 years of treatment and over 6 years since originally being diagnosed with MGUS, this is a problem for me. I have to remind myself that dealing with myeloma is a marathon, not a sprint. So don't get too thrilled with one good test result or too upset by one not-so-good result. Try to keep plugging along at a steady (mental) state.
Easy to say, but not so easy to do.
That said, congratulations on your latest test result. I'm rooting for more of the same for you!
Mike
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mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
Re: Response to Kyprolis (carfilzomib)
Congratulations! Thanks for sharing the good news. Ask the doc to consider adding Revlimid back to the mix for a stronger response, now that you know you respond to carfilzomib.
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philatour - Who do you know with myeloma?: spouse
Re: Response to Kyprolis (carfilzomib)
Very Good news Mr PH, at least you know the myeloma can be 'hit' with something to control it for you. That must lift your spirits.
As suggested by others you might discuss with your specialist the possibility of adding another drug to deepen the response, as three drug regimes are often deemed more effective., even one that by itself is unresponsive,
Edna
As suggested by others you might discuss with your specialist the possibility of adding another drug to deepen the response, as three drug regimes are often deemed more effective., even one that by itself is unresponsive,
Edna
Re: Response to Kyprolis (carfilzomib)
Dear Edna and philatour,
Thanks for your point about adding another drug. My oncologist plans to do that, but wants me to go through one more cycle on just carfilzomib and dex. I think that is because I am prone to myelosupression and I am beginning to get some adverse effects on my kidney function.
Edna, Yes the fact that I now know that my myeloma is not invulnerable has really lifted my spirits!
Dear mikeb,
You so right about this being a marathon, as I have learned from reading others' experiences. The duration or depth of a response to a given drug or a stem cell procedure cannot be reliably predicted in any given case, although the ongoing research into relevant characteristic of subtypes of myeloma (for example, the various genetic characteristics) does seem to be adding to better accuracy in prognosis. But this is across large numbers of cases, and does not do much for a given individual. One has to be, as you say, mentally prepared for a long battle. Right now I feel better prepared.
Thanks, mikeb.
Thanks for your point about adding another drug. My oncologist plans to do that, but wants me to go through one more cycle on just carfilzomib and dex. I think that is because I am prone to myelosupression and I am beginning to get some adverse effects on my kidney function.
Edna, Yes the fact that I now know that my myeloma is not invulnerable has really lifted my spirits!
Dear mikeb,
You so right about this being a marathon, as I have learned from reading others' experiences. The duration or depth of a response to a given drug or a stem cell procedure cannot be reliably predicted in any given case, although the ongoing research into relevant characteristic of subtypes of myeloma (for example, the various genetic characteristics) does seem to be adding to better accuracy in prognosis. But this is across large numbers of cases, and does not do much for a given individual. One has to be, as you say, mentally prepared for a long battle. Right now I feel better prepared.
Thanks, mikeb.
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MrPotatohead - Name: MrPotatohead
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: March, 2015
- Age at diagnosis: 65
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