I'm very sorry to read about your experience with Kyprolis, Tracy. I really hope your heart function recovers and that any damaged it suffered is short lived. I also really appreciate your sharing your experience with everyone here in the forum.
I guess its a tribute to the marketing that's been done surrounding Kyprolis that so many people are surprised when they hear about the sort of side effects you experienced. Everyone seems to think that Kyprolis is some sort of super-safe drug just because it causes less peripheral neuropathy than Velcade.
The reality is that there have been concerns about Kyprolis's safety since before it was approved by the FDA. In fact, the FDA staff reported that it was "very concerned" about the drug's side effects in a document it prepared for the meeting of the FDA advisory committee that reviewed the drug:
"FDA "Very Concerned" About Carfilzomib's Safety," The Myeloma Beacon, June 18, 2012
The advisory committee eventually voted to recommend approval of the drug, and the FDA followed through by actually approving it. But trial results since then consistently (but not always) show that Kyprolis causes the sort of side effects you mentioned.
Yes, you see similar side effects occurring sometimes with Velcade, and there are those who think proteasome inhibitors in general may be prone to causing the side effect. But saying that Velcade also causes the side effect doesn't mean it's caused as often, or as severely, as when it happens with Kyprolis – just as Kyprolis also causes peripheral neuropathy in some patients, but not as often and not as severely as Velcade.
Again, thanks for your posting, and I'm crossing my fingers that you recover fully from the heart issues that have developed. Good luck!
Forums
Re: Shortness of breath from Kyprolis - will it go away?
I have had the exact same experience as you on Kyprolis (except for your most recent diagnosis, which scares me that I may be diagnosed like that as well).
I did two months (cycles) of Kyprolis. The heavy-chestedness, chest pain, extreme shortness of breath were pretty severe. I went off of it and am about to start the pomalidomide protocol. I am wondering if a history of smoking makes it worse in certain individuals. I was a tobacco smoker but quit that years ago. I have been using cannabis since I was diagnosed in 2007 and have had a smokers cough from it. That has now been diagnosed as COPD. I believe the combination of chemo drug and heavy cannabis smoking "fried" my lungs in some way.
My symptoms have improved greatly since going off of Kyprolis and they continue to improve since I've completely given up inhaling anything anymore. I did all the cardio and pulmonary work ups and there is nothing to indicated the cause of all this. I still have EXTREME shortness of breath. It's a VERY, VERY SLOW improvement for me.
Good luck. I'm going to try some natural recommendations for improvement on what they have diagnosed as COPD which is really a reaction to the Kyprolis.
I did two months (cycles) of Kyprolis. The heavy-chestedness, chest pain, extreme shortness of breath were pretty severe. I went off of it and am about to start the pomalidomide protocol. I am wondering if a history of smoking makes it worse in certain individuals. I was a tobacco smoker but quit that years ago. I have been using cannabis since I was diagnosed in 2007 and have had a smokers cough from it. That has now been diagnosed as COPD. I believe the combination of chemo drug and heavy cannabis smoking "fried" my lungs in some way.
My symptoms have improved greatly since going off of Kyprolis and they continue to improve since I've completely given up inhaling anything anymore. I did all the cardio and pulmonary work ups and there is nothing to indicated the cause of all this. I still have EXTREME shortness of breath. It's a VERY, VERY SLOW improvement for me.
Good luck. I'm going to try some natural recommendations for improvement on what they have diagnosed as COPD which is really a reaction to the Kyprolis.
Re: Shortness of breath from Kyprolis - will it go away?
Hi!
My husband is on Kyprolis (carfilzomib). He is also having radiation treatments for a mass in his back and a couple of lesions. He was in excruciating pain before the radiation. Now the pain has eased up a little bit to where he doesn't have to use a cane to walk.
My question is, has anyone on this regimen experienced shortness of breath? And what can I do to help him? At what point will I have to take him to ER and what can they do for him?
He is a 13-year survivor and I'm very worried this disease might be progressing too fast. He has been on Pomalyst and Darzalex and he didn't respond to those. He's also had a stem cell transplant about 6 years ago and was in remission for almost 2 years. Myeloma came back and he was given Velcade with dexamathasone and did very well on it until a year ago.
I know shortness of breath is one of the side effects of all these drugs, but is there anything I can do for my husband?
I would appreciate any suggestions. Thank you!
Jojo
My husband is on Kyprolis (carfilzomib). He is also having radiation treatments for a mass in his back and a couple of lesions. He was in excruciating pain before the radiation. Now the pain has eased up a little bit to where he doesn't have to use a cane to walk.
My question is, has anyone on this regimen experienced shortness of breath? And what can I do to help him? At what point will I have to take him to ER and what can they do for him?
He is a 13-year survivor and I'm very worried this disease might be progressing too fast. He has been on Pomalyst and Darzalex and he didn't respond to those. He's also had a stem cell transplant about 6 years ago and was in remission for almost 2 years. Myeloma came back and he was given Velcade with dexamathasone and did very well on it until a year ago.
I know shortness of breath is one of the side effects of all these drugs, but is there anything I can do for my husband?
I would appreciate any suggestions. Thank you!
Jojo
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Jojo - Name: Jojo
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: 2003
- Age at diagnosis: 51
Re: Shortness of breath from Kyprolis - will it go away?
When my oncologist suggested Kyprolis, he also asked me to be in a study they were doing to prevent heart problems from occurring during treatment. So I had a echo and electric cardiogram before treatment began and repeated this every 3 weeks. My heart was normal. I had a headache from the beginning, and my blood pressure was all over the place, but within normal limits.
I had one week off and then two weeks of Kyprolis. During this time, I was in the emergency room (ER) 3 times due to the headaches, high blood pressure, and low grade fever. After my last treatment, I got platelets and red blood cells. The next night I was short of breath and my blood pressure was 168/110. I went to see my myeloma specialist and he sent me to the ER at the Hospital of the University of Pennsylvania. I was diagnosed with fluid overload and was put on Lasix (furosemide). But a new echo showed damage to my heart muscle. They weren't sure if it was from the Kyprolis or possibly amyloidosis. So they did a heart cath with a biopsy. My heart wouldn't stop bleeding and I coded on the table.
They think my heart will come back, but I am done with Kyprolis.
I had one week off and then two weeks of Kyprolis. During this time, I was in the emergency room (ER) 3 times due to the headaches, high blood pressure, and low grade fever. After my last treatment, I got platelets and red blood cells. The next night I was short of breath and my blood pressure was 168/110. I went to see my myeloma specialist and he sent me to the ER at the Hospital of the University of Pennsylvania. I was diagnosed with fluid overload and was put on Lasix (furosemide). But a new echo showed damage to my heart muscle. They weren't sure if it was from the Kyprolis or possibly amyloidosis. So they did a heart cath with a biopsy. My heart wouldn't stop bleeding and I coded on the table.
They think my heart will come back, but I am done with Kyprolis.
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SandyR - Name: Sandy R
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 8/1/2012
- Age at diagnosis: 59
Re: Shortness of breath from Kyprolis - will it go away?
As I'm reading this thread again with the latest posts, I want to share may husband's experience with Kyprolis.
My husband was on Kyprolis + Cytoxan (cyclophosphamide) for about 3 months starting in August. He developed shortness of breath that gradually got worse. First it was only when climbing stairs, then when walking, then when sitting down, then even when lying down. He was told to just put more pillows under his head for sleeping when he couldn't sleep at night because of it.
In early November, it worsened more and they had to stop all myeloma treatment. A few days later, we ended up in the ER with severe shortness of breath. It was too much fluid. They gave him Lasix (furosemide) and other heart medications, in addition to heart meds he was already on.
The cardiologist (who also specializes in the effects of cancer drugs on the heart) says this was unlikely because of the Kyprolis. He claims it has a lot more to do with the heart history and the fact that he hadn't taken his heart medications for a while (before multiple myeloma). The diuretics he is on are causing kidney issues (kidney doctor said so, it's not from the myeloma), but the cardiologist insists that these heart meds are required and that they will protect the heart and the kidneys in the long run.
Now that he has been off Kyprolis for a while, and with all the meds, things are improving (no shortness of breath, and kidney function gradually getting better too). In reading this thread it really does sound like Kyprolis had a lot to do with the shortness of breath, as the experience is similar to what others here are describing, and the timing matches the time he was on this drug.
My husband was on Kyprolis + Cytoxan (cyclophosphamide) for about 3 months starting in August. He developed shortness of breath that gradually got worse. First it was only when climbing stairs, then when walking, then when sitting down, then even when lying down. He was told to just put more pillows under his head for sleeping when he couldn't sleep at night because of it.
In early November, it worsened more and they had to stop all myeloma treatment. A few days later, we ended up in the ER with severe shortness of breath. It was too much fluid. They gave him Lasix (furosemide) and other heart medications, in addition to heart meds he was already on.
The cardiologist (who also specializes in the effects of cancer drugs on the heart) says this was unlikely because of the Kyprolis. He claims it has a lot more to do with the heart history and the fact that he hadn't taken his heart medications for a while (before multiple myeloma). The diuretics he is on are causing kidney issues (kidney doctor said so, it's not from the myeloma), but the cardiologist insists that these heart meds are required and that they will protect the heart and the kidneys in the long run.
Now that he has been off Kyprolis for a while, and with all the meds, things are improving (no shortness of breath, and kidney function gradually getting better too). In reading this thread it really does sound like Kyprolis had a lot to do with the shortness of breath, as the experience is similar to what others here are describing, and the timing matches the time he was on this drug.
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Alizabeth - Name: Alizabeth
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: March 2016
- Age at diagnosis: 61
Re: Shortness of breath from Kyprolis - will it go away?
Is it possible to have this sort of problem (shortness of breath / heart failure related to the use of Kyprolis) and have the heart damage reversed?
Our cardiologist still holds that the heart problem has nothing to do with Kyprolis, most likely, and that it is unlikely to improve. As a result, my husband is currently not a candidate for a transplant. Too much risk involved given the heart condition. Kidneys are also not doing great, and the nephrologist says it's mostly due to the heart medications.
According to the cardiologist, if any improvement would have happened, it would happen within 6 months of the onset of the heart problem. He tested at at 4 month, no improvement. Didn't bother to test at 6 months as he doesn't believe it would improve. But it will be tested next time we see him.
Any input from others on this topic would be helpful. Thanks!
Our cardiologist still holds that the heart problem has nothing to do with Kyprolis, most likely, and that it is unlikely to improve. As a result, my husband is currently not a candidate for a transplant. Too much risk involved given the heart condition. Kidneys are also not doing great, and the nephrologist says it's mostly due to the heart medications.
According to the cardiologist, if any improvement would have happened, it would happen within 6 months of the onset of the heart problem. He tested at at 4 month, no improvement. Didn't bother to test at 6 months as he doesn't believe it would improve. But it will be tested next time we see him.
Any input from others on this topic would be helpful. Thanks!
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Alizabeth - Name: Alizabeth
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: March 2016
- Age at diagnosis: 61
Re: Shortness of breath from Kyprolis - will it go away?
This article provides a good summary of cardiac-related issues that can come up during treatment for multiple myeloma:
Ritts, AJ, et al, "Cardiac Considerations for Modern Multiple Myeloma Therapies", American College of Cardiology, July 7, 2016 (link to full text of review article)
I wish I was more aware of this prior to the Kyprolis treatment and got better monitoring / awareness from the staff administering treatment as symptoms of shortness of breath were getting worse for my husband. Worth taking a look if you are on Kyprolis or have a pre-existing cardiac condition.
Additional references:
Chen, JH, et al, "Cardiac events during treatment with proteasome inhibitor therapy for multiple myeloma," Cardio-Oncology, June 1, 2017 (link to full text of article)
Lenihan, DJ, et al, "Evaluation of Cardiovascular Comorbidities Among Patients with Multiple Myeloma in the United States," ASH 2016 Annual Meeting abstract 4794
Ritts, AJ, et al, "Cardiac Considerations for Modern Multiple Myeloma Therapies", American College of Cardiology, July 7, 2016 (link to full text of review article)
I wish I was more aware of this prior to the Kyprolis treatment and got better monitoring / awareness from the staff administering treatment as symptoms of shortness of breath were getting worse for my husband. Worth taking a look if you are on Kyprolis or have a pre-existing cardiac condition.
Additional references:
Chen, JH, et al, "Cardiac events during treatment with proteasome inhibitor therapy for multiple myeloma," Cardio-Oncology, June 1, 2017 (link to full text of article)
Lenihan, DJ, et al, "Evaluation of Cardiovascular Comorbidities Among Patients with Multiple Myeloma in the United States," ASH 2016 Annual Meeting abstract 4794
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Alizabeth - Name: Alizabeth
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: March 2016
- Age at diagnosis: 61
Re: Shortness of breath from Kyprolis - will it go away?
This is a topic that interests me as well.
I started on Kyprolis eight weeks ago, and had all the heart checks, etc, before stating. Everything was perfect! (Had nuclear medical exams, etc.) As I am on a Australian first trial for relapsed myeloma patients, they were were very thorough.
After my first cycle, my protein dropped from 17 g/l to 5 g/l (1.7 g/dL to 0.5 g/l) , which we were all very happy with. But I did complain of shortness of breath.
As this is one of the side effects (shortness of breath), I wasn't too worried. But my oncologist said just to be on the safe side to have a CT scan, which I did yesterday.
I have just got a call from the hospital to be there first thing in the morning to see my oncologist, as I have two clots in my heart on in each side, and they are very concerned
They are going to start twice daily injections to see if they can clear them.
So I am wondering if this is a common problem with Kyprolis, even after taking it for such a short time.
If it is related to the Kyprolis, I don't know know if I should stop my treatment or not.
I have already had one stem cell transplant and another is not an option.
Any advise would be greatly appreciated.
I started on Kyprolis eight weeks ago, and had all the heart checks, etc, before stating. Everything was perfect! (Had nuclear medical exams, etc.) As I am on a Australian first trial for relapsed myeloma patients, they were were very thorough.
After my first cycle, my protein dropped from 17 g/l to 5 g/l (1.7 g/dL to 0.5 g/l) , which we were all very happy with. But I did complain of shortness of breath.
As this is one of the side effects (shortness of breath), I wasn't too worried. But my oncologist said just to be on the safe side to have a CT scan, which I did yesterday.
I have just got a call from the hospital to be there first thing in the morning to see my oncologist, as I have two clots in my heart on in each side, and they are very concerned
They are going to start twice daily injections to see if they can clear them.
So I am wondering if this is a common problem with Kyprolis, even after taking it for such a short time.
If it is related to the Kyprolis, I don't know know if I should stop my treatment or not.
I have already had one stem cell transplant and another is not an option.
Any advise would be greatly appreciated.
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Tori - Name: Victoria
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: June 2013
- Age at diagnosis: 56
Re: Shortness of breath from Kyprolis - will it go away?
I have been on and off Kyprolis (carfilzomib) and dex since October 2019. Plus the usual antiviral and antibacterial drugs. After 1 or 2 cycles, my bilirubin levels where not good, so all medication stopped. It turned out the culprit was the antibacterial dapsone, which didn't agree with me. Which was good because the Kyprolis was working well against the cancer. So after approximately a month I went back on the Kyprolis and dex regimen and a different antibacterial. So from January until the end of May I continued with treatment. My paraprotein (M-spike) is the lowest it has been since my diagnosis, down to 2.1 g/l (0.21 g/dL).
Unfortunately, towards the end of April I started feeling very fatigued and generally unwell. By mid May, I was breathless after even the littlest amount of physical activity. Even talking left me finding it hard to breath. If I was lying on my back, I felt I was suffocating, and I would have to lie on my side.
If I was just sitting down, I was okay. But anything else left me breathless.
After contacting my doctor, I was sent for a CT on my lungs, followed by an ultrasound of my heart. Nothing showed up out of the ordinary. I have not been back on treatment since June and my breathing and fatigue has all but returned to normal.
Now I don't know the medical terms, but my doctor reexamined my blood results since I recommenced treatment and found that the Kyprolis basically was blasting my red cells to pieces, leaving the fragments floating around, and he believes that they accumulated in my lungs or heart (can't remember which), but at a level too small to detect. This is what caused my breathlessness. At least that's the way my layman mind understands it.
Furthermore, the fear of continuing on Kyprolis could very well lead to clots or even stroke. Therefore, although it was working well on the cancer, the risk to continue was too high.
So what's my point? Just that if you too are feeling breathless on this stuff, don't dismiss it. There could be more going on than you realise.
My doctor also said that he has had a few of his patients have similar symptoms. But we are in the minority.
Anyway, take care all.
Vic
Unfortunately, towards the end of April I started feeling very fatigued and generally unwell. By mid May, I was breathless after even the littlest amount of physical activity. Even talking left me finding it hard to breath. If I was lying on my back, I felt I was suffocating, and I would have to lie on my side.
If I was just sitting down, I was okay. But anything else left me breathless.
After contacting my doctor, I was sent for a CT on my lungs, followed by an ultrasound of my heart. Nothing showed up out of the ordinary. I have not been back on treatment since June and my breathing and fatigue has all but returned to normal.
Now I don't know the medical terms, but my doctor reexamined my blood results since I recommenced treatment and found that the Kyprolis basically was blasting my red cells to pieces, leaving the fragments floating around, and he believes that they accumulated in my lungs or heart (can't remember which), but at a level too small to detect. This is what caused my breathlessness. At least that's the way my layman mind understands it.
Furthermore, the fear of continuing on Kyprolis could very well lead to clots or even stroke. Therefore, although it was working well on the cancer, the risk to continue was too high.
So what's my point? Just that if you too are feeling breathless on this stuff, don't dismiss it. There could be more going on than you realise.
My doctor also said that he has had a few of his patients have similar symptoms. But we are in the minority.
Anyway, take care all.
Vic
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vicstir - Name: Vic
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: October 2013
- Age at diagnosis: 39
Re: Shortness of breath from Kyprolis - will it go away?
Thanks for sharing your experience, Vic. That's potentially very valuable information for all of us who have Kyprolis in our futures.
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Mike F - Name: Mike F
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: May 18, 2012
- Age at diagnosis: 53
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