This week's poll question asks whether you are currently, or have previously been, treated with Kyprolis (carfilzomib).
Kyprolis is the fourth and most recent novel agent to be approved by the FDA for the treatment of multiple myeloma. It was approved about six months ago.
As usual, there are a few clarifications to the poll question:
First, this question is only for readers who have active multiple myeloma (that is, not smoldering myeloma, and not MGUS).
Second, if you are a caregiver or family member of someone who has active myeloma, feel free to answer on their behalf
As always, feel free to post comments, thoughts, or feedback in the space below. They can be very useful to other readers.
Links to previous, similar polls for the other three novel agents are below:
thalidomide (Thalomid)
https://myelomabeacon.org/forum/weekly-poll-treatment-with-thalidomide-active-myeloma-t768.html
Velcade (bortezomib)
https://myelomabeacon.org/forum/weekly-poll-treatment-with-velcade-active-myeloma-t805.html
Revlimid (lenalidomide)
https://myelomabeacon.org/forum/weekly-poll-treatment-with-revlimid-active-myeloma-t817.html
Forums
9 posts
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Re: Weekly Poll - Treatment With Kyprolis (Active Myeloma) 2
Hello,
My husband has been in the Carfilzomib/Revlimid/Dex clinical trial for newly diagnosed multiple myeloma patients at the Univ of Mich. since June 2011. His M protein was 4.9 at diagnosis and he has numerous lesions in his skull, arms and legs. It took 20 cycles before his M protein went to 0. Others in the study have gotten to CR quickly but his was stubborn, I guess. It was in 85% of his marrow at his first BMB so maybe that is why.
He has experienced many of the textbook complications from the multiple myeloma, Revlimid,, and the Dex. But he's still working when he feels well enough and when he's not going back and forth to UM ( we live nearly 4 hrs away, 1 way.) He still does most of the things he did before, again when he feels energetic enough. Hopefully when he gets thru the 24th cycle and then goes on maintenance Revlimid his energy level will return. His hemoglobin has still been really low, usually 10-11 range, so we know that has a lot to do with his lack of energy. Each month he has a little more PN than the month before, but so far not enough to alter the treatment plan.
I wish the best for all the others on this site who are also battling multiple myeloma.
My husband has been in the Carfilzomib/Revlimid/Dex clinical trial for newly diagnosed multiple myeloma patients at the Univ of Mich. since June 2011. His M protein was 4.9 at diagnosis and he has numerous lesions in his skull, arms and legs. It took 20 cycles before his M protein went to 0. Others in the study have gotten to CR quickly but his was stubborn, I guess. It was in 85% of his marrow at his first BMB so maybe that is why.
He has experienced many of the textbook complications from the multiple myeloma, Revlimid,, and the Dex. But he's still working when he feels well enough and when he's not going back and forth to UM ( we live nearly 4 hrs away, 1 way.) He still does most of the things he did before, again when he feels energetic enough. Hopefully when he gets thru the 24th cycle and then goes on maintenance Revlimid his energy level will return. His hemoglobin has still been really low, usually 10-11 range, so we know that has a lot to do with his lack of energy. Each month he has a little more PN than the month before, but so far not enough to alter the treatment plan.
I wish the best for all the others on this site who are also battling multiple myeloma.
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Chris M
Re: Weekly Poll - Treatment With Kyprolis (Active Myeloma) 2
I am currently taking Kyprolis and Dex in a maintenance setting. I do day 1,2,8,9,15 & 16 and then have a month off. I have only completed 2 cycles and have had no adverse side effects.
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meeshymeesh - Name: Michelle
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2009
- Age at diagnosis: 40
Re: Weekly Poll - Treatment With Kyprolis (Active Myeloma) 2
Hi Chris,
Thank you for providing information on your husband's experience with carfilzomib. It is interesting that it took 20 cycles to get the m-spike down.
My dad is currently on carfilzomib/dex/thalidomide/cytoxan. He has high-risk myeloma (del 17 chromosome). His m-spike was at 2.0 when he started his treatment and it took 5 full cycles before it started going down. We were almost ready to switch to something else.
His lowest reading on this treatment was 1.3 but last month it nudged up again to 1.7.
I am curious if your husband experienced any fluctuations in his m-spike (did it steadily go down over the 20 cycles or were there times it bounced up, then went down again)?
I wish your husband the best and you too!
Thank you for providing information on your husband's experience with carfilzomib. It is interesting that it took 20 cycles to get the m-spike down.
My dad is currently on carfilzomib/dex/thalidomide/cytoxan. He has high-risk myeloma (del 17 chromosome). His m-spike was at 2.0 when he started his treatment and it took 5 full cycles before it started going down. We were almost ready to switch to something else.
His lowest reading on this treatment was 1.3 but last month it nudged up again to 1.7.
I am curious if your husband experienced any fluctuations in his m-spike (did it steadily go down over the 20 cycles or were there times it bounced up, then went down again)?
I wish your husband the best and you too!
Re: Weekly Poll - Treatment With Kyprolis (Active Myeloma) 2
Hello ideesmom5,
My husband's M protein hasn't fluctuated upward--it went down each month steadily for over a year but then it plateaued at 0.1 for over 6 months. No change at all, which was kind of frustrating. Although' it meant the multiple myeloma was not active, which was wonderful, at the same time we wanted it gone! We began to think that maybe 0.1 was the best Carfilzomib might do ( which was fantastic, I know) but the U-M providers said they had seen it drop as late as 23 and 24th cycles. And they were right! He's had 3 labs now that reflect 0.0, so we're starting to believe that maybe the multiple myeloma is gone for the time being and hopefully he'll be able to enjoy a period of time, however long that might be, before the multiple myeloma comes back,
Since my husband was newly diagnosed when he began this clinical trial, I think maybe that helped him have such a good response. Is your father newly diagnosed, or had he been treated with other multiple myeloma therapies prior to Carfilzomib?
I hope your father will also get good results with the Carfilzomib. Best wishes to you both.
Chris
My husband's M protein hasn't fluctuated upward--it went down each month steadily for over a year but then it plateaued at 0.1 for over 6 months. No change at all, which was kind of frustrating. Although' it meant the multiple myeloma was not active, which was wonderful, at the same time we wanted it gone! We began to think that maybe 0.1 was the best Carfilzomib might do ( which was fantastic, I know) but the U-M providers said they had seen it drop as late as 23 and 24th cycles. And they were right! He's had 3 labs now that reflect 0.0, so we're starting to believe that maybe the multiple myeloma is gone for the time being and hopefully he'll be able to enjoy a period of time, however long that might be, before the multiple myeloma comes back,
Since my husband was newly diagnosed when he began this clinical trial, I think maybe that helped him have such a good response. Is your father newly diagnosed, or had he been treated with other multiple myeloma therapies prior to Carfilzomib?
I hope your father will also get good results with the Carfilzomib. Best wishes to you both.
Chris
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Chris M
Re: Weekly Poll - Treatment With Kyprolis (Active Myeloma) 2
Hi again Chris,
That is great news that your husband has had a complete response! It must feel wonderful to have your lives "back". I hope it lasts for a very long time; he deserves it after all those months of fighting!
My dad has had prior treatments (Velcade/Cytox/Dex, then Velcade/Rev, and now the Carfil/cytox/thalidomide./dex). So he was already pretty heavily treated and unfortunately has never reached a complete response. We know with his high-risk status that he has a fight ahead of him.
We will be re-grouping at the end of this month. If his m-spike is still climbing, I think it is time to consider something different. We still have a few more things to try, and I am grateful for that.
Thanks again for your info and the good wishes for us.
That is great news that your husband has had a complete response! It must feel wonderful to have your lives "back". I hope it lasts for a very long time; he deserves it after all those months of fighting!
My dad has had prior treatments (Velcade/Cytox/Dex, then Velcade/Rev, and now the Carfil/cytox/thalidomide./dex). So he was already pretty heavily treated and unfortunately has never reached a complete response. We know with his high-risk status that he has a fight ahead of him.
We will be re-grouping at the end of this month. If his m-spike is still climbing, I think it is time to consider something different. We still have a few more things to try, and I am grateful for that.
Thanks again for your info and the good wishes for us.
Re: Weekly Poll - Treatment With Kyprolis (Active Myeloma) -
my wife began taking Kyprolis today for the first time. This after 8 session of Velcade and a stem cell, Her M protein went to 4.2 after 6 months. it changed form to plasmolysis after transplant. She is in a lot of pain.
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freidoon rastegar
Re: Weekly Poll - Treatment With Kyprolis (Active Myeloma) -
I started my first treatment last week of CYCLONE (carfilzomib, thalidomide, dexamethasone, and cyclophosphamide). I was diagnosed 2/14/2013 when I broke my arm moving a bowl. Still learning what it all means.
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Butterfly - Name: Cristina
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 02/14/2013
- Age at diagnosis: 45
Re: Weekly Poll - Treatment With Kyprolis (Active Myeloma) -
My husband started treatment with Revlimid with 40mg of Dexamethasone in August of 2010. He continued to do well until January of 2013 when his m-spike went up to 1.46. After a year, the Dexamethasone was creating a Dr. Jekyl in my husband. Crazy dude. So the doctor stopped the steroids for a while. Not sure if this was a good move because this January, a mass started growing on his shoulder. After a couple MRI's, the doctor implemented Revlimid and 20 mg of Dexamethasone. In addition, Velcade shots were given (two each week in two weeks consecutively, one week off). The Velcade was not reacting quick enough and the mass was not reduced. The M-spike has remained 1.46. He is now beginning a new treatment on July 16 combining, Revlimid, Dexamethasone and Krypolis. Wish us luck.
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bpodnar
9 posts
• Page 1 of 1