The University of Pennsylvania study on Kyprolis is somewhat disturbing.
"Carfilzomib Can Lead To Cardiovascular Toxicity In Multiple Myeloma Patients," University of Pennsylvania press release, Dec 28, 2017
I have been on Velcade for nine years but it is becoming less effective as the multiple myeloma is building up resistance. Substituting Kyprolis was something that I thought would be the logical follow up. However, Kyprolis is implicated in adverse cardiovascular side effects some 6 times higher than Velcade. I had valve replacement surgery in 2014, so any heightened risk of a cardiovascular side effects gives me pause.
Forums
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Ron Harvot - Name: Ron Harvot
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2009
- Age at diagnosis: 56
Re: Heart-related side effects from Kyprolis
I too found the findings disturbing as I have been on Kyprolis as maintenance for 2 years this month and it was also used during my induction therapy for about 6 months. Luckily I didn't have any heart issues prior to being diagnosed with multiple myeloma. I actually have had low blood pressure readings for as long as I can remember, just recently I started having normal blood pressure readings. Today it was 120/80 first time to my knowledge. My doctor does monitor my heart for any disease annually through an echocardiogram. So far all is good.
I visited with my oncologist today. He is aware of this issue with Kyprolis and believes we are using the best treatment for my multiple myeloma. I have extra copies of 1q. He said we are monitoring for any heart issues closely and will possibly lower the dose if needed. I am already on a reduced dose for maintenance because of the side effects I was having.
I am in relatively good health other then the multiple myeloma. I walk and practice yoga and try to eat healthy. I am not overweight. So hopefully all this will eliminate any heart issues.
I wish everyone on Kyprolis the best results possible! It seems to work on combating my multiple myeloma.
Ron I wish you the best in finding an alternative to Velcade.
Praying for a cure.
Rhonda
I visited with my oncologist today. He is aware of this issue with Kyprolis and believes we are using the best treatment for my multiple myeloma. I have extra copies of 1q. He said we are monitoring for any heart issues closely and will possibly lower the dose if needed. I am already on a reduced dose for maintenance because of the side effects I was having.
I am in relatively good health other then the multiple myeloma. I walk and practice yoga and try to eat healthy. I am not overweight. So hopefully all this will eliminate any heart issues.
I wish everyone on Kyprolis the best results possible! It seems to work on combating my multiple myeloma.
Ron I wish you the best in finding an alternative to Velcade.
Praying for a cure.
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: Heart-related side effects from Kyprolis
Like Rhonda, I'm being treated with Kyprolis as part of my maintenance regimen, and it was also part of my initial treatment pre-autologous stem cell transplant. I'm a "high-risk" patient and expect to be on this maintenance regimen for at least 2 more years (I just completed a year of maintenance).
I've responded really well to Kyprolis and hope to be able to stay with the treatment for as long as necessary. I know my doctor is familiar with the potential heart issues and we monitor my heart closely. I know if it were totally up to me I would still choose the treatment because I know it is doing well against the myeloma and the possible side effects, though serious, are worth the risk.
I've responded really well to Kyprolis and hope to be able to stay with the treatment for as long as necessary. I know my doctor is familiar with the potential heart issues and we monitor my heart closely. I know if it were totally up to me I would still choose the treatment because I know it is doing well against the myeloma and the possible side effects, though serious, are worth the risk.
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Mark Pouley - Name: Mark
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: April 2015
- Age at diagnosis: 53
Re: Heart-related side effects from Kyprolis
I have been on Kyprolis and dexamethasone for 3 years and the response has been great. My M-spike has not risen above 0.4 g/dL (4 g/l) since July of 2015. I feel good and I tolerate the treatment extremely well.
I have atrial fibrillation and consistent low blood pressure. My doctor monitors my cardiac health with an echo-cardiogram and electrocardiograph every 6 months. My current regimen with Kyprolis and dex is two infusions a week every other week.
Good luck
I have atrial fibrillation and consistent low blood pressure. My doctor monitors my cardiac health with an echo-cardiogram and electrocardiograph every 6 months. My current regimen with Kyprolis and dex is two infusions a week every other week.
Good luck
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Dano - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Jan 2014
- Age at diagnosis: 65
Re: Heart-related side effects from Kyprolis
Are chest pain and irregular heart beat after taking Kyprolis (carfilzomib) a sign of heart-related issues due to Kyprolis?
Re: Heart-related side effects from Kyprolis
You should be monitored carefully while on Kyprolis, especially if you have any heart issues. I have been under treatment at Dana Farber and at Beth Israel Deaconess in Boston. I also have amyloidosis of the heart due to myeloma, and although it is mild, doctors at both hospitals said they would not consider Kyprolis for me, only as a last resort. They have seen permanent heart / lung damage from the drug. They have said that they believe doctors must chose carefully who is a candidate for the drug and then monitor for heart issues during the course of treatment.
If you are having chest pain and atrial fibrillation, you need to bring it to the attention of your cardiologist and oncologist immediately. Steroids can also be a culprit in matters of heart problems, so you may also need a reduction in steroid dose. I am on Darzalex and Revlimid and I cannot take steroids for 2 days after treatment as most patients do, and my IV steroid dose day of Darzalex infusion is 40 mg (decreased from norm of 60 mg) as it is all I can tolerate. Also, the nurses slowly infuse the steroid over 5 minutes or more because if the dose is pushed quickly into my arm, I feel chest pain and can go into atrial fibrillation.
To complicate matters, it's my understanding that drugs like Revlimid, Pomalyst, and thalidomide also can cause palpitations and atrial fibrillation in some patients. I can no longer tolerate Pomalyst as it gives me shortness of breath, chest pain, and episodes of atrial fibrillation, but I have been tolerating Revlimid at 10 mg every 3 days. In the past, I was on much higher dose of Revlimid (25 mg every day) without any issues (before going to transplant), but for some reason I could never tolerate that dose today.
Everyone is different in their sensitivity, tolerance, and response to treatment, and unfortunately, much of it is learn-as-we-go, but do not neglect to report symptoms that do not feel "right" to you, and trust your intuition.
If you are having chest pain and atrial fibrillation, you need to bring it to the attention of your cardiologist and oncologist immediately. Steroids can also be a culprit in matters of heart problems, so you may also need a reduction in steroid dose. I am on Darzalex and Revlimid and I cannot take steroids for 2 days after treatment as most patients do, and my IV steroid dose day of Darzalex infusion is 40 mg (decreased from norm of 60 mg) as it is all I can tolerate. Also, the nurses slowly infuse the steroid over 5 minutes or more because if the dose is pushed quickly into my arm, I feel chest pain and can go into atrial fibrillation.
To complicate matters, it's my understanding that drugs like Revlimid, Pomalyst, and thalidomide also can cause palpitations and atrial fibrillation in some patients. I can no longer tolerate Pomalyst as it gives me shortness of breath, chest pain, and episodes of atrial fibrillation, but I have been tolerating Revlimid at 10 mg every 3 days. In the past, I was on much higher dose of Revlimid (25 mg every day) without any issues (before going to transplant), but for some reason I could never tolerate that dose today.
Everyone is different in their sensitivity, tolerance, and response to treatment, and unfortunately, much of it is learn-as-we-go, but do not neglect to report symptoms that do not feel "right" to you, and trust your intuition.
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Melpen - Name: Melissa
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: Feb 5, 2014
- Age at diagnosis: 57
Re: Heart-related side effects from Kyprolis
I am completing my second cycle of Kyprolis as part of a consolidation protocol after my autologous stem cell transplant. I was concerned about the potential side effects, but am relieved that I am tolerating the twice weekly infusions well. Since I don't have a port, I'm hoping that this will be my last cycle and I can move to regular maintenance of Revlimid and dexamethasone. I do have a IV fluids prior to the 10 minute Kyprolis infusion, and that seems to help.
My biggest side effect is the dexamethasone crash about 48 hours after I take that. I'm hoping to reduce or eliminate the dex when I move to maintenance.
Keep working with your doctor and let them know about the side effects so they can make adjustments as needed. No need to wait until your next appointment.
My biggest side effect is the dexamethasone crash about 48 hours after I take that. I'm hoping to reduce or eliminate the dex when I move to maintenance.
Keep working with your doctor and let them know about the side effects so they can make adjustments as needed. No need to wait until your next appointment.
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GoDucks - Name: GoDucks
- Who do you know with myeloma?: me
- When were you/they diagnosed?: March, 2017
- Age at diagnosis: 61
Re: Heart-related side effects from Kyprolis
For people with heart disease, I personally believe Kyprolis (carfilzomib) to be a very dangerous drug, and I would encourage anyone considering it who does have heart trouble to proceed with extreme caution.
I have been on Kyprolis since August, 2015, first as part of an induction regimen, and, after my autologous stem cell transplant in April, 2017, as maintenance.
Mindful of its cardiotoxic effects, I followed the manufacturer’s recommendation of frequent echocardiograms during treatment.
My first echocardiogram, intended as establishing a baseline, was performed just before Kyprolis treatment began, and showed no signs of enlargement of any of my heart chambers.
Two months after I started Kyprolis, however, a second echocardiagram showed approximately two millimeters of left atrial enlargement (measured laterally). Still within normal limits.
A few months later, my left atrial enlargement had grown to eight millimeters above the baseline level. This was now an official “enlarged” atrium.
Finally, an echocardiogram taken in early 2018 showed “severe atrial enlargement” (quoted from the report).
Now, why, might you ask, did my oncologist not stop the drug as soon as the enlargement began? He had, after all, been in communication with my cardiologist, who reported these results to him.
The reason my oncologist gave was that atrial enlargement had never been reported as a complication caused by Kyprolis! Now, even if that were true (and I have doubts about that), the purpose of the echocardiagrams was to identify ANY abnormality associated with therapy, not just those that had been discovered to date. You’d think that would be obvious. (Amgen, the manufacturer, explicitly states it).
You might also ask why I, the patient, being apprised of these changes, would not have stopped the Kyprolis treatments.
Good question. And I don’t have a good answer. My answer is that I never saw the echocardiagram reports. They were shared only with my oncologist. And whenever I asked my cardiologist how the latest echocardiagram looked, he would invariably say something like “fine” or “great”, apparently taking his cue from my oncologist, who dismissed the indications of enlargement for the specious reason given above.
All of this finally came to light when I had to switch cardiologists upon the retirement of my first one, and I did see the final echocardiogram showing “severe left atrial enlargement.” At that point I asked my oncologist to immediately stop the Kyprolis, and obtained copies of the previous echocardiagram reports, which showed the steady enlargement described above.
In nearly thirty years of having heart disease, I never had enlargement of any chamber of my heart until a little less than two months on Kyprolis.
The lessons? Here is what I suggest:
This episode is yet another example of why myeloma patients need to educate themselves on this disease and make sure you know enough to evaluate test results, which you must demand to see.
Either that, or get someone else as your quarterback. You just cannot trust the line players not to make a mistake – a mistake that could kill you.
In my case, no one was incompetent, and all my doctors had the best of intentions.
Unfortunately, especially with this complex disease, that old saw about which road is paved with good intentions is completely applicable.
Incidentally, I have filed a report concerning my heart chamber enlargement side effect with both Amgen and the FDA. Please do that too if you have a similar experience. You could at least save someone else from a similar fate, or at best help remove a dangerous drug from the market.
I have been on Kyprolis since August, 2015, first as part of an induction regimen, and, after my autologous stem cell transplant in April, 2017, as maintenance.
Mindful of its cardiotoxic effects, I followed the manufacturer’s recommendation of frequent echocardiograms during treatment.
My first echocardiogram, intended as establishing a baseline, was performed just before Kyprolis treatment began, and showed no signs of enlargement of any of my heart chambers.
Two months after I started Kyprolis, however, a second echocardiagram showed approximately two millimeters of left atrial enlargement (measured laterally). Still within normal limits.
A few months later, my left atrial enlargement had grown to eight millimeters above the baseline level. This was now an official “enlarged” atrium.
Finally, an echocardiogram taken in early 2018 showed “severe atrial enlargement” (quoted from the report).
Now, why, might you ask, did my oncologist not stop the drug as soon as the enlargement began? He had, after all, been in communication with my cardiologist, who reported these results to him.
The reason my oncologist gave was that atrial enlargement had never been reported as a complication caused by Kyprolis! Now, even if that were true (and I have doubts about that), the purpose of the echocardiagrams was to identify ANY abnormality associated with therapy, not just those that had been discovered to date. You’d think that would be obvious. (Amgen, the manufacturer, explicitly states it).
You might also ask why I, the patient, being apprised of these changes, would not have stopped the Kyprolis treatments.
Good question. And I don’t have a good answer. My answer is that I never saw the echocardiagram reports. They were shared only with my oncologist. And whenever I asked my cardiologist how the latest echocardiagram looked, he would invariably say something like “fine” or “great”, apparently taking his cue from my oncologist, who dismissed the indications of enlargement for the specious reason given above.
All of this finally came to light when I had to switch cardiologists upon the retirement of my first one, and I did see the final echocardiogram showing “severe left atrial enlargement.” At that point I asked my oncologist to immediately stop the Kyprolis, and obtained copies of the previous echocardiagram reports, which showed the steady enlargement described above.
In nearly thirty years of having heart disease, I never had enlargement of any chamber of my heart until a little less than two months on Kyprolis.
The lessons? Here is what I suggest:
- Insist on reviewing all echocardiagrams yourself. The reports are easily decipherable by a layman with Google at hand;
- Make sure your cardiologist and oncologist flag ANY abnormality that crops up during treatment, whether or not it is a known side effect of Kyprolis;
- Ensure that your cardiologist and oncologist copy each other on everything.
This episode is yet another example of why myeloma patients need to educate themselves on this disease and make sure you know enough to evaluate test results, which you must demand to see.
Either that, or get someone else as your quarterback. You just cannot trust the line players not to make a mistake – a mistake that could kill you.
In my case, no one was incompetent, and all my doctors had the best of intentions.
Unfortunately, especially with this complex disease, that old saw about which road is paved with good intentions is completely applicable.
Incidentally, I have filed a report concerning my heart chamber enlargement side effect with both Amgen and the FDA. Please do that too if you have a similar experience. You could at least save someone else from a similar fate, or at best help remove a dangerous drug from the market.
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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: Heart-related side effects from Kyprolis
I looked up the Beacon to check out heart related side effects from carfilzomib. I see that most of you are having good results from carfilzomib, so I hesitated to add my experience until reading one of the posts here.
The brief version (of my story) is that I don’t, nor have ever had heart disease. However, after being treated with carfilzomib, I have now been found to have an ejection fraction of 25%, the consequence of an extremely enlarged left ventricle. The damage is possibly irreversible. It’s not definitively blamed on carfilzomib, and I did sign a waiver prior to treatment. There’s no clear causal proof. It was a Catch 22 situation as no other treatment was available for my multiple myeloma, and at the time I naively thought I wouldn’t have any issues; lifestyle-wise, I wasn’t a candidate for heart disease.
I still don’t have heart disease, I have heart damage, and am now being educated about heart failure. And, going through the process of experimenting with various heart medications so that I can properly function, Apparently, it takes a while to get it right.
The brief version (of my story) is that I don’t, nor have ever had heart disease. However, after being treated with carfilzomib, I have now been found to have an ejection fraction of 25%, the consequence of an extremely enlarged left ventricle. The damage is possibly irreversible. It’s not definitively blamed on carfilzomib, and I did sign a waiver prior to treatment. There’s no clear causal proof. It was a Catch 22 situation as no other treatment was available for my multiple myeloma, and at the time I naively thought I wouldn’t have any issues; lifestyle-wise, I wasn’t a candidate for heart disease.
I still don’t have heart disease, I have heart damage, and am now being educated about heart failure. And, going through the process of experimenting with various heart medications so that I can properly function, Apparently, it takes a while to get it right.
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kefrewin - Name: Karen Frewin NZ
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 2009
- Age at diagnosis: 53
Re: Heart-related side effects from Kyprolis
Thanks for sharing your experiences, MrPotatohead and kefrewin.
Kyprolis certainly is an effective drug. But I am baffled, and frankly disappointed, by the fact that several myeloma specialists are pushing to see it used routinely, for extended periods of time, in newly diagnosed patients and even smoldering patients.
I perhaps could understand its use in certain high-risk newly diagnosed patients. Even in those cases, I think the more prudent approach would be something like Darzalex + RVD, or even just Darzalex + RD or VD.
Given the ever-increasing survival expectations for newly diagnosed myeloma patients, it seems crazy to be advocating for the use of Kyprolis in such patients.
Kyprolis certainly is an effective drug. But I am baffled, and frankly disappointed, by the fact that several myeloma specialists are pushing to see it used routinely, for extended periods of time, in newly diagnosed patients and even smoldering patients.
I perhaps could understand its use in certain high-risk newly diagnosed patients. Even in those cases, I think the more prudent approach would be something like Darzalex + RVD, or even just Darzalex + RD or VD.
Given the ever-increasing survival expectations for newly diagnosed myeloma patients, it seems crazy to be advocating for the use of Kyprolis in such patients.
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