I am looking for thoughts, experiences about Kyprolis (carfilzomib) being used as maintenance therapy. I went for my 100 day post transplant appointment and it was suggested I start maintenance in January.
In addition to seeing my BMT, I saw a new doctor , a multiple myeloma specialist, as I didn't have one. She seems quite knowledgeable and is a straight-to-the-point type of doctor. She has given me the option as to whether to even do maintenance, but because it was suggested by her, I feel I should pursue maintenance treatment.
I mentioned to her about heart issue side effects that have been discussed by others on this site, and she said she would monitor my heart with treatment. I used Kyprolis during my induction therapy January to July with no problems. The maintenance would be reduced from twice a week for three weeks with one week off to twice a week every other week.
She said I can take drug holidays if I want to go on an extended vacation and the dose would be modified if I experience any discomfort.
Any and all thoughts and experiences would be appreciated.
Thank you
Rhonda
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Rhonda - Who do you know with myeloma?: myself
- When were you/they diagnosed?: September 2014
- Age at diagnosis: 54
Re: Kryprolis as maintenance therapy
Hi Rhonda
I have been on Kyprolis for about three months, and I have a serious heart condition. I have had no problems at all, but it is important that you are monitored in case they do come up.
For me, my cardiologist does an echocardiogram a few times a year. My last one was about a month ago, and there were no issues.
Kyprolis is working well for me so far, at least as far as reducing my free light chain numbers (I have kappa light chain multiple myeloma), and I hope you have good results, too.
Best of luck!
I have been on Kyprolis for about three months, and I have a serious heart condition. I have had no problems at all, but it is important that you are monitored in case they do come up.
For me, my cardiologist does an echocardiogram a few times a year. My last one was about a month ago, and there were no issues.
Kyprolis is working well for me so far, at least as far as reducing my free light chain numbers (I have kappa light chain multiple myeloma), and I hope you have good results, too.
Best of luck!
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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: Kryprolis as maintenance therapy
Hi MrPotatohead
Thank you for the response. I am happy to hear Krypolis is working for you and I hope it will continue to do so. I do not have any current heart issues but will definitely be monitored so if something does crop up I will be on top of it.
Thank you again,
Rhonda
Thank you for the response. I am happy to hear Krypolis is working for you and I hope it will continue to do so. I do not have any current heart issues but will definitely be monitored so if something does crop up I will be on top of it.
Thank you again,
Rhonda
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Rhonda - Who do you know with myeloma?: myself
- When were you/they diagnosed?: September 2014
- Age at diagnosis: 54
Re: Kryprolis as maintenance therapy
Hi Rhonda,
After being newly diagnosed in 2011, my husband was on Kyprolis (along with Revlimid and dex) during a 2-year clinical study before the FDA approved it for wider use. He was on the same schedule you mentioned, initially for 2 days per week for 3 weeks with 1 week off and later in the study it was reduced to 2 days per week every other week.
My husband did not experience any adverse cardiac events, but others have posted in these forums that they experienced significant cardiac problems. It sounds like you may have already searched these forums and read them.
My husband experienced shortness of breath during exertion, which continues to bother him to this day. Several pulmonary evaluations have not found any cause for it, and it remains a problem for him despite three prescriptions to help. He has never smoked but has had asthma since a child, so it's difficult to say if his worsening breathing problems are from his low hemoglobin or drug related.
The Kyprolis, Revlimid, dex over the two year period did a great job getting him to a complete response. He chose to harvest his stem cells after cycle 4, but not go to stem cell transplant. His M-spike has been slowly increasing this past year, now up to 0.5 g/dl (5 g/L) despite the Revlimid and dex, and we're waiting to see when his physician will recommend something else since the current treatment is not working as well as it used to (25 mg Revlimid and 20 mg dex).
I wish you all the best using Kyprolis for maintenance therapy.
Chris M.
After being newly diagnosed in 2011, my husband was on Kyprolis (along with Revlimid and dex) during a 2-year clinical study before the FDA approved it for wider use. He was on the same schedule you mentioned, initially for 2 days per week for 3 weeks with 1 week off and later in the study it was reduced to 2 days per week every other week.
My husband did not experience any adverse cardiac events, but others have posted in these forums that they experienced significant cardiac problems. It sounds like you may have already searched these forums and read them.
My husband experienced shortness of breath during exertion, which continues to bother him to this day. Several pulmonary evaluations have not found any cause for it, and it remains a problem for him despite three prescriptions to help. He has never smoked but has had asthma since a child, so it's difficult to say if his worsening breathing problems are from his low hemoglobin or drug related.
The Kyprolis, Revlimid, dex over the two year period did a great job getting him to a complete response. He chose to harvest his stem cells after cycle 4, but not go to stem cell transplant. His M-spike has been slowly increasing this past year, now up to 0.5 g/dl (5 g/L) despite the Revlimid and dex, and we're waiting to see when his physician will recommend something else since the current treatment is not working as well as it used to (25 mg Revlimid and 20 mg dex).
I wish you all the best using Kyprolis for maintenance therapy.
Chris M.
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Chris M
Re: Kryprolis as maintenance therapy
Hi Chris,
Thanks for letting me know about the pulmonary issue your husband is experiencing. It is odd that they can't determine why he is experiencing this. I hope it resolves itself. Do they think it was the Kyprolis?
You mention he is no longer using Kyprolis; I am just curious why it was stopped.
I wish you both the best finding a new treatment that will work for him.
Rhonda
Thanks for letting me know about the pulmonary issue your husband is experiencing. It is odd that they can't determine why he is experiencing this. I hope it resolves itself. Do they think it was the Kyprolis?
You mention he is no longer using Kyprolis; I am just curious why it was stopped.
I wish you both the best finding a new treatment that will work for him.
Rhonda
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Rhonda - Who do you know with myeloma?: myself
- When were you/they diagnosed?: September 2014
- Age at diagnosis: 54
Re: Kryprolis as maintenance therapy
Hi Rhonda,
My husband stopped Kyprolis after 24 cycles in 2013 because that was the endpoint of the clinical study he participated in (study was Kyprolis / Revlimid / dex in newly diagnosed patients). Now that his M spike is increasing again in 2015 and Revlimid / dex seem to be less effective, his physician might start him on Kyprolis again since he tolerated it pretty well. We'll find out in January what the new plan will be.
My husband and I were discussing his breathing problems recently and while we think it's possible Kyprolis made it worse, his physicians have not said that is the root cause. Now in hindsight he said he recalls his breathing had become more difficult during exertion several months before he was diagnosed in 2011. I'm wondering if It's partly Kyprolis, plus low hemoglobin, and his asthma.
Best wishes,
Chris
My husband stopped Kyprolis after 24 cycles in 2013 because that was the endpoint of the clinical study he participated in (study was Kyprolis / Revlimid / dex in newly diagnosed patients). Now that his M spike is increasing again in 2015 and Revlimid / dex seem to be less effective, his physician might start him on Kyprolis again since he tolerated it pretty well. We'll find out in January what the new plan will be.
My husband and I were discussing his breathing problems recently and while we think it's possible Kyprolis made it worse, his physicians have not said that is the root cause. Now in hindsight he said he recalls his breathing had become more difficult during exertion several months before he was diagnosed in 2011. I'm wondering if It's partly Kyprolis, plus low hemoglobin, and his asthma.
Best wishes,
Chris
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Chris M
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