I completed the seventh cycle of Revlimid, Velcade, and dexamethasone (RVD) in December. I started with kappa free light chains of 5000 (no M-spike) and went down to about 600, where they stayed for cycles 5,6, and 7. My oncologist described this as a 'plateau".
My first marrow biopsy showed 90% plasma cells, and the last one showed 14%. I figure 14/90 = about 85% response, which seems good, but I, of course, was dreaming of a better response, so as to be able to go on maintenance, and delay a SCT. My oncologist does not feel that my response, while good, was not good enough to proceed to a SCT.
Now I have started 28-day cycles of carfilzomib. On the one hand, starting a new therapy gives me a new hope of a better remission, but reading the brochure is depressing.
"Kyprolis is approved to treat patients with multiple myeloma who have received at least 2 prior therapies including botezomib and an immunomodulatory agent and whose disease has progressed on or within 60 days of the last therapy."
"In the clinical trial, 22% of patients showed a measurable improvement (overall response) with Kyprolis"
Now, I had been told repeatedly that RVD was the optimum therapy available to me, and now we are resorting to a treatment with a 22% response rate??
On the lighter side, I'd really like to meet and have a word with whomever comes up with the names of these drugs! The abundance of z's and b's give them all a demonic sound. The common 'zomib" ending sounds like "zombie". I remembered "carfilzomib" by thinking : CAR FILled with ZOMbies!
Forums
Re: Kyprolis (carfilzomib) - how effective is it?
Hello Jim:
I refer you to the news section of the Beacon. I am not best at finding the many older links and posts, but there are many on Kyprolis (carfilzomib). There is a list of links at the top of the first page of the news section that will take you to articles about specific treatments such as Kyprolis.
Kyprolis is the 2nd generation proteasome inhibitor. The first generation PI was Velcade, and it was a godsend to multiple myeloma patients, improving response by leaps and bounds (along with Revlimid) compared to the earlier era. Very roughly speaking, the "novel agents" came in during the 2008 to 2010 time frame.
Kyprolis was supposed to be an improvement over Velcade. Kyprolis has just passed a big clinical trial that established that on a clinical trial basis. Actually, by now, its several trials, but the one published last week was the "head to head" of Kyprolis vs Velcade.
I have just researched this extensively for my wife's condition, as we needed to select a treatment last started last September. The research indicated that Kyprolis would be better than Velcade, but it would only be available on a trial, and no appropriate one was available for us locally.
So we started with Velcade (included in RVD), and thank God, so far so good.
So I urge you to research on your own the Kyprolis issue. It's relatively new, but it's a very good thing. One of the earlier things that they established was that if the multiple myeloma stopped responding to Velcade, that replacing the treatment with Kyprolis got a response. This is a very good thing.
The recent trials and debate was whether or not Kyprolis should be used at the very beginning (the upfront treatment setting). Many multiple myeloma docs hypothesize that Kyprolis will over time become the upfront standard.
So I think that, when you look into it more, you will probably get more comfortable, but please do your own research, and best of luck to you.
I would be glad to hear any commentary if anyone has any more up-to-date info.
Regards,
JPC
I refer you to the news section of the Beacon. I am not best at finding the many older links and posts, but there are many on Kyprolis (carfilzomib). There is a list of links at the top of the first page of the news section that will take you to articles about specific treatments such as Kyprolis.
Kyprolis is the 2nd generation proteasome inhibitor. The first generation PI was Velcade, and it was a godsend to multiple myeloma patients, improving response by leaps and bounds (along with Revlimid) compared to the earlier era. Very roughly speaking, the "novel agents" came in during the 2008 to 2010 time frame.
Kyprolis was supposed to be an improvement over Velcade. Kyprolis has just passed a big clinical trial that established that on a clinical trial basis. Actually, by now, its several trials, but the one published last week was the "head to head" of Kyprolis vs Velcade.
I have just researched this extensively for my wife's condition, as we needed to select a treatment last started last September. The research indicated that Kyprolis would be better than Velcade, but it would only be available on a trial, and no appropriate one was available for us locally.
So we started with Velcade (included in RVD), and thank God, so far so good.
So I urge you to research on your own the Kyprolis issue. It's relatively new, but it's a very good thing. One of the earlier things that they established was that if the multiple myeloma stopped responding to Velcade, that replacing the treatment with Kyprolis got a response. This is a very good thing.
The recent trials and debate was whether or not Kyprolis should be used at the very beginning (the upfront treatment setting). Many multiple myeloma docs hypothesize that Kyprolis will over time become the upfront standard.
So I think that, when you look into it more, you will probably get more comfortable, but please do your own research, and best of luck to you.
I would be glad to hear any commentary if anyone has any more up-to-date info.
Regards,
JPC
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JPC - Name: JPC
Re: Kyprolis (carfilzomib) - how effective is it?
Promising: After only two infusions of carfilzomib, my free light chains have dropped from 700 to 400!
Re: Kyprolis (carfilzomib) - how effective is it?
Jim, I hope you will continue to update.
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cdnirene - Name: Irene S
- Who do you know with myeloma?: me
- When were you/they diagnosed?: September 2014
- Age at diagnosis: 66
Re: Kyprolis (carfilzomib) - how effective is it?
I am part of an institutional trial of car-bird.
This is upfront carfilzomib (Kyprolis), in my case 45 mg twice a week for 3 weeks with one week off, and low-dose dex 20 mg twice a week of each 4 week cycle. This continued for 7 months when I plateaued at 0.1 g/dL M-spike (M-spike at the beginning of induction was 4.2 g/dL).
BTW, I have t(4,14), 1q gain and trisomy of the 11th chromosome. According to My PRS, I am borderline high risk. I may be deemed intermediate risk by the Mayo Clinic and high risk by virtually everyone else...
The Kyprolis regimen was quite easy to deal with. Other than a few slightly elevated creatinine tests, I had no real side effects. It caused my M-spike to go down by over 95 percent without me having to take any of the more toxic drugs.
As a side note, the "bird" portion of this therapy - which I did after plateauing on Kyprolis and dex - is Revlimid (25 mg) for 21 days of each 28 day cycle with dex 40 mg once a week and Biaxin daily along with a baby aspirin. My M-spike did not go down further on 3 "Bird" cycles. I then moved to Revlimid maintenance, which has resulted in no measurable M-spike (that's correct, no movement in M-spike while on Rd and Biaxin but movement on 10 mg Revlimid without dex or Biaxin. Go figure!)
Bottom line: I had really good success with virtually no side effects with Kyprolis as a frontline therapy. My hope is that Kyprolis will become a standard frontline treatment - especially for t(4,14) patients, which will have even more efficacy than Velcade without the neuropathy and other side effects.
So I am a believer in Kyprolis as a frontline anti-myeloma drug.
This is upfront carfilzomib (Kyprolis), in my case 45 mg twice a week for 3 weeks with one week off, and low-dose dex 20 mg twice a week of each 4 week cycle. This continued for 7 months when I plateaued at 0.1 g/dL M-spike (M-spike at the beginning of induction was 4.2 g/dL).
BTW, I have t(4,14), 1q gain and trisomy of the 11th chromosome. According to My PRS, I am borderline high risk. I may be deemed intermediate risk by the Mayo Clinic and high risk by virtually everyone else...
The Kyprolis regimen was quite easy to deal with. Other than a few slightly elevated creatinine tests, I had no real side effects. It caused my M-spike to go down by over 95 percent without me having to take any of the more toxic drugs.
As a side note, the "bird" portion of this therapy - which I did after plateauing on Kyprolis and dex - is Revlimid (25 mg) for 21 days of each 28 day cycle with dex 40 mg once a week and Biaxin daily along with a baby aspirin. My M-spike did not go down further on 3 "Bird" cycles. I then moved to Revlimid maintenance, which has resulted in no measurable M-spike (that's correct, no movement in M-spike while on Rd and Biaxin but movement on 10 mg Revlimid without dex or Biaxin. Go figure!)
Bottom line: I had really good success with virtually no side effects with Kyprolis as a frontline therapy. My hope is that Kyprolis will become a standard frontline treatment - especially for t(4,14) patients, which will have even more efficacy than Velcade without the neuropathy and other side effects.
So I am a believer in Kyprolis as a frontline anti-myeloma drug.
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Myelomafighter
Re: Kyprolis (carfilzomib) - how effective is it?
As a follow up to my last post, I believe that all of the novel agents started out as approved for refractory or relapsed uses only. Then, in the US anyway, there are trials testing the efficacy and toxicity for use in frontline therapy. Thereafter they become approved for frontline therapy.
Revlimid for example only recently has been approved in Europe for frontline treatment.
So I wouldn't "judge" Krypolis by its PFS in the refractory and relapse setting. Often patients in those studies have had multiple lines of treatment and many are at the point in their disease progression where they are running out of viable options. A 22 month PFS in those cases is actually an impressive result. But, more importantly, the PFS in the refractory cases is not indicative of the efficacy of this agent as part of frontline or early treatment.
I suppose that in the next 3-5 years we will have studies on Krypolis' efficacy in frontline or early treatment to draw on.
Revlimid for example only recently has been approved in Europe for frontline treatment.
So I wouldn't "judge" Krypolis by its PFS in the refractory and relapse setting. Often patients in those studies have had multiple lines of treatment and many are at the point in their disease progression where they are running out of viable options. A 22 month PFS in those cases is actually an impressive result. But, more importantly, the PFS in the refractory cases is not indicative of the efficacy of this agent as part of frontline or early treatment.
I suppose that in the next 3-5 years we will have studies on Krypolis' efficacy in frontline or early treatment to draw on.
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Myelomafighter
Re: Kyprolis (carfilzomib) - how effective is it?
Two points to add to my earlier post, but first to Jimskayak, I am glad its working for you and good luck.
First point, after I hit send, on thought came up regarding side effects. The experienced doctor (hopefully a myeloma specialist) and the patient should always be looking at it, and patients respond differently. Having researched Carfilzomib (K) a great deal, I recall that the studies report that the overall seriousness and amount of adverse reactions are about the same between K and Velcade (V). They are not exactly the same type, however. K does not have nearly as much neuropathy, on the plus side. K, on the other hand has a low level occurrence of heart issues. Now, myeloma hits generally people who are older and who are sicker (from the myeloma itself and other age issues). So some docs feel that the heart issue might go away, however time may also validate this issue. Right now, if you have a heart issue, especially a serious one, that could rule out K.
Second point to myelomafighter, on the issue of the studies. Very good point and one that I have realized. For new treatments, you are not going to get your "final" answer from any of the studies. I have read every multiple myeloma ASH abstract from the last 2 years. Phase 3 studies reported now have been going on for 4 to 6 years and were designed, registered and approved a year or two before that. There are very few Phase 3 studies reporting first generation novel agent (NA) results (they usually include a period of time before RVD). What we really want to know is the overall survival, and that is being pushed (particularly for low risk patients), above 6 or 8 years with the 1st gen NA, and the whole point of the second generation is hopefully they will be better. So doctors and patients need to make decisions on "early signal" results of the earlier phase trials. One point of note, however, if a treatment has been shown to have effect in RRMM, it almost always correlates to good effect in NDMM. If a treatment has been show superior in RRMM to another, it almost always will be superior in the NDMM setting, this is what the studies appear to show so far.
First point, after I hit send, on thought came up regarding side effects. The experienced doctor (hopefully a myeloma specialist) and the patient should always be looking at it, and patients respond differently. Having researched Carfilzomib (K) a great deal, I recall that the studies report that the overall seriousness and amount of adverse reactions are about the same between K and Velcade (V). They are not exactly the same type, however. K does not have nearly as much neuropathy, on the plus side. K, on the other hand has a low level occurrence of heart issues. Now, myeloma hits generally people who are older and who are sicker (from the myeloma itself and other age issues). So some docs feel that the heart issue might go away, however time may also validate this issue. Right now, if you have a heart issue, especially a serious one, that could rule out K.
Second point to myelomafighter, on the issue of the studies. Very good point and one that I have realized. For new treatments, you are not going to get your "final" answer from any of the studies. I have read every multiple myeloma ASH abstract from the last 2 years. Phase 3 studies reported now have been going on for 4 to 6 years and were designed, registered and approved a year or two before that. There are very few Phase 3 studies reporting first generation novel agent (NA) results (they usually include a period of time before RVD). What we really want to know is the overall survival, and that is being pushed (particularly for low risk patients), above 6 or 8 years with the 1st gen NA, and the whole point of the second generation is hopefully they will be better. So doctors and patients need to make decisions on "early signal" results of the earlier phase trials. One point of note, however, if a treatment has been shown to have effect in RRMM, it almost always correlates to good effect in NDMM. If a treatment has been show superior in RRMM to another, it almost always will be superior in the NDMM setting, this is what the studies appear to show so far.
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JPC - Name: JPC
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