I received my first two treatments of Kyprolis (carfilzomib) a week ago on the 18th of March. I received my second infusion on the 19th of March.
I developed some pretty severe shortness of breath, described as dyspnea at stage / level 3 or 4.
Went back to the oncologist for treatment this week and they stopped treatment.
They prescribed an inhaler and I have been using it for a couple days without much success in stopping the shortness of breath.
I have a general question for anyone with experience with Kyprolis: Do you know how long the shortness of breath will last?
If my treatment is stopped, will it go away? How long before it goes away?
Thanks,
Kathy Perrott
Forums
Re: Shortness of breath from Kyprolis - will it go away?
It is important to understand why you are experiencing shortness of breath (dyspnea). Is this due to pulmonary infiltrate, or heart volume overload? I would suggest a chest xray and potentially an echocardiogram of the heart. We can treat with diuretics or antibiotics based on the reason for shortness of breath.
In general, the problem is transient and resolves within a few days.
In general, the problem is transient and resolves within a few days.
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Dr. Jatin Shah - Name: Jatin Shah, M.D.
Beacon Medical Advisor
Re: Shortness of breath from Kyprolis - will it go away?
I am just finishing my third cycle of carfilzomib / Revlimid / dex. It sounds like the shortness of breath (dyspnea) I've had is much less severe than yours. It has only been intermittent and only interferes with my activities for moments at a time. Because of the mildness of the symptoms and their transient nature, I have not had any testing for it - we are just watching it.
My experience has been that it predictably lasts for two or three days after my infusions, then goes away.
My experience has been that it predictably lasts for two or three days after my infusions, then goes away.
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Tracy J - Name: Tracy Jalbuena
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2014
- Age at diagnosis: 42
Re: Shortness of breath from Kyprolis - will it go away?
My husband got quite dyspnic while on Kyprolis (he is also on Pomalyst). His doc did the full work up for dyspnea; chest xray and echo were normal. Going up stairs was very hard for him, as was going from sitting to standing (was not blood pressure related).
Two months ago his doctor changed his Kyprolis from 3 weeks on, one week off. That lessened his dyspnea greatly; however, his M-spike is now climbing.
Two months ago his doctor changed his Kyprolis from 3 weeks on, one week off. That lessened his dyspnea greatly; however, his M-spike is now climbing.
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rumnting - Who do you know with myeloma?: husband
- When were you/they diagnosed?: 4/9/11
- Age at diagnosis: 54
Re: Shortness of breath from Kyprolis - will it go away?
For whatever it is worth, I'm about to start my 10th cycle of Kyprolis, Revlimid and dex. The first cycle was very challenging. I got a bad rash over the top half of my entire body. I was bald at that time, so I appeared as one big scab. Second cycle, I had a fever that required hospitalization. Since then, the effects have gradually lessened to virtually nothing now. I have a little muscle spasm, but I hardly notice that I'm on an aggressive course of chemotherapy.
My uneducated guess is that your side effects might lessen over time as well, although I know this thought might not be relevant, as everyone is different. It's just that Kyprolis has been very effective for me in reducing and almost eliminating my disease burden. I would hate for someone to give up on it too soon.
My uneducated guess is that your side effects might lessen over time as well, although I know this thought might not be relevant, as everyone is different. It's just that Kyprolis has been very effective for me in reducing and almost eliminating my disease burden. I would hate for someone to give up on it too soon.
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kenport
Re: Shortness of breath from Kyprolis - will it go away?
Hi, my name is Ruth. My mother has multiple myeloma, kappa light chain expression. She is 79 years old. She experienced the same severe shortness of breath (dyspnea) after starting Kyprolis. She landed in the hospital. The hospital worked her up to rule out a pulmonary embolism, which was ruled out., She was in fluid overload from the Kyprolis. Once she was started with Lasix (furosemide) 10 mg daily, she has not had any further problems.
Also, the amount of IV fluids that are given to you pre- and post-infusion of the Kyprolis were also decreased. Instead of getting 250 cc of IV fluids before and after the Kyprolis, she just gets 250 cc of fluids after the Kyprolis. Less IV fluid has also helped.
My Mother has had this disease for 4 1/2 years now and is doing very well. Her disease is stable. Talk with your doctor and let him tweak your treatment. My mom is now finishing her 8th round and is going to do at least 2 more rounds.
I wish you luck in your myeloma journey!
Also, the amount of IV fluids that are given to you pre- and post-infusion of the Kyprolis were also decreased. Instead of getting 250 cc of IV fluids before and after the Kyprolis, she just gets 250 cc of fluids after the Kyprolis. Less IV fluid has also helped.
My Mother has had this disease for 4 1/2 years now and is doing very well. Her disease is stable. Talk with your doctor and let him tweak your treatment. My mom is now finishing her 8th round and is going to do at least 2 more rounds.
I wish you luck in your myeloma journey!
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ruth
Re: Shortness of breath from Kyprolis - will it go away?
Here's an unfortunate update on my carfilzomib experience.
After 6 months of lenalidomide/ carfilzomib/ dexamethasone (Revlimid, Kyprolis, and dex), I had an episode of chest pain and shortness of breath. A full evaluation (partially in my OWN ER, by the way) included an echocardiogram of my heart. The echo shows NEW grade 2 diastolic dysfunction with left atrium enlargement and pulmonary hypertension with right atrium enlargement.
This is bad. I had none of this before. My local oncologist called a myeloma specialist at Dana Farber, and he thinks this is all due to the carfilzomib. He thinks this sort of thing is happening a lot more frequently than reported in the published studies. I definitely need to stop the carfilzomib.
I will be starting pomalidomide (Pomalyst, Imnovid) / Cytoxan (cyclophosphamide) / dex as a replacement soon.
So anyone on carfilzomib should keep a sharp eye out for cardiopulmonary changes. Don't hesitate to get an echo to check on things.
After 6 months of lenalidomide/ carfilzomib/ dexamethasone (Revlimid, Kyprolis, and dex), I had an episode of chest pain and shortness of breath. A full evaluation (partially in my OWN ER, by the way) included an echocardiogram of my heart. The echo shows NEW grade 2 diastolic dysfunction with left atrium enlargement and pulmonary hypertension with right atrium enlargement.
This is bad. I had none of this before. My local oncologist called a myeloma specialist at Dana Farber, and he thinks this is all due to the carfilzomib. He thinks this sort of thing is happening a lot more frequently than reported in the published studies. I definitely need to stop the carfilzomib.
I will be starting pomalidomide (Pomalyst, Imnovid) / Cytoxan (cyclophosphamide) / dex as a replacement soon.
So anyone on carfilzomib should keep a sharp eye out for cardiopulmonary changes. Don't hesitate to get an echo to check on things.
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Tracy J - Name: Tracy Jalbuena
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2014
- Age at diagnosis: 42
Re: Dyspnea from Kyprolis - will it go away?
This is very interesting as Krypolis is a proteosome inhibitor like Velcade. There is published study indicating the development of breathless with Velcade in some people.
http://www.ncbi.nlm.nih.gov/pubmed/22688931-
Breathless on bortezomib.
O'Riordan D1, Houghton J, Chisholm R, O'Driscoll BR.
It seems not all myeloma specialists are aware of this.
My concern remains that in the push to get new treatments approved, some of these serious side effects are being missed in clinical trials. This might be the case where only a very few show signs which are not deemed related to treatment by nvestigators. That is why detailed medical history prior to treatment is so important in assessing what is going on for a particular patient.
Edna
http://www.ncbi.nlm.nih.gov/pubmed/22688931-
Breathless on bortezomib.
O'Riordan D1, Houghton J, Chisholm R, O'Driscoll BR.
It seems not all myeloma specialists are aware of this.
My concern remains that in the push to get new treatments approved, some of these serious side effects are being missed in clinical trials. This might be the case where only a very few show signs which are not deemed related to treatment by nvestigators. That is why detailed medical history prior to treatment is so important in assessing what is going on for a particular patient.
Edna
Re: Shortness of breath from Kyprolis - will it go away?
Hi,
My husband began a clinical trial of Kyprolis, Revlimid, and dexamethasone in 2011 at the University of Michigan. His infusions were two consecutive days for 3 weeks for 8 cycles, then 2 consecutive days every other week until he finished a total of 24 cycles. He received pre- and post-hydration each time.
He has had asthma / allergies since childhood and also experienced shortness of breath (dyspnea) about the 3rd cycle, which was investigated immediately with chest X-rays and echo. No cardiac issues were found, nor when they repeated the x-rays and echo at the end of the study. We were extremely fortunate because we knew it was a very real possibility, especially given he had experienced the shortness of breath (dyspnea). He takes three different prescriptions to help his lungs (2 he took prior to being diagnosed), but still has problems with shortness of breath during exertion and actually has appointments for pulmonary function testing and then the pulmonary specialist tomorrow.
I thought it might be helpful to share how we were informed about possible side effects when he was offered a place in the study. Before he agreed to take part in it, we received a huge packet (almost a book) detailing pages and pages of possible side effects each drug could cause. We were asked to read it completely before making a decision to join the study and were left alone in the exam room to do so. Shortness of breath as well as potential cardiac problems were among them, although at that time I can't recall what severity was listed for them. Medical staff later came in and verbally explained / discussed the side effects and answered our questions. He underwent a battery of tests before starting the trial, including chest x-rays, EKG, etc.
During his two years on the trial, the trial documents were updated twice afterwards as new side effects were reported or became more significant. Again, we received updated copies of the clinical trial documents, verbally discussed the new / updated side effects again with medical staff, and our questions were answered. My husband also had to complete a survey each month regarding any side effects he was experiencing. Everything – even some things we thought were minor – was documented to the "nth" degree. I felt a great deal of comfort knowing he was being so closely monitored during those two years.
Sadly, we all know that each multiple myeloma patient is faced with the awful reality that any of these medicines that might help keep the multiple myeloma under control might also cause side effects as bad as – or worse than – the multiple myeloma itself. We try to pick the lesser of two evils sometimes and pray we picked the right one.
Chris M.
My husband began a clinical trial of Kyprolis, Revlimid, and dexamethasone in 2011 at the University of Michigan. His infusions were two consecutive days for 3 weeks for 8 cycles, then 2 consecutive days every other week until he finished a total of 24 cycles. He received pre- and post-hydration each time.
He has had asthma / allergies since childhood and also experienced shortness of breath (dyspnea) about the 3rd cycle, which was investigated immediately with chest X-rays and echo. No cardiac issues were found, nor when they repeated the x-rays and echo at the end of the study. We were extremely fortunate because we knew it was a very real possibility, especially given he had experienced the shortness of breath (dyspnea). He takes three different prescriptions to help his lungs (2 he took prior to being diagnosed), but still has problems with shortness of breath during exertion and actually has appointments for pulmonary function testing and then the pulmonary specialist tomorrow.
I thought it might be helpful to share how we were informed about possible side effects when he was offered a place in the study. Before he agreed to take part in it, we received a huge packet (almost a book) detailing pages and pages of possible side effects each drug could cause. We were asked to read it completely before making a decision to join the study and were left alone in the exam room to do so. Shortness of breath as well as potential cardiac problems were among them, although at that time I can't recall what severity was listed for them. Medical staff later came in and verbally explained / discussed the side effects and answered our questions. He underwent a battery of tests before starting the trial, including chest x-rays, EKG, etc.
During his two years on the trial, the trial documents were updated twice afterwards as new side effects were reported or became more significant. Again, we received updated copies of the clinical trial documents, verbally discussed the new / updated side effects again with medical staff, and our questions were answered. My husband also had to complete a survey each month regarding any side effects he was experiencing. Everything – even some things we thought were minor – was documented to the "nth" degree. I felt a great deal of comfort knowing he was being so closely monitored during those two years.
Sadly, we all know that each multiple myeloma patient is faced with the awful reality that any of these medicines that might help keep the multiple myeloma under control might also cause side effects as bad as – or worse than – the multiple myeloma itself. We try to pick the lesser of two evils sometimes and pray we picked the right one.
Chris M.
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Chris M
Re: Shortness of breath from Kyprolis - will it go away?
Dear Chris M
It is great that your husband was s rigorously monitored during a clinical trial at the institution the trial was held. The standards of reporting reactions can vary even with clinical trials and a lot depends on whether clinical staff notice changes too and actively elicit information.
As you rightly point out each patient will differ and the sensitivity with which adverse reactions, however mild, are picked up fast will be important in assessing any treatment drug for general safety across a wide and diverse patient population for who it will be used.
You are right, in tackling this disease to give us life for as long as possible the price we may pay is to deal with adverse reactions which have to be assessed and treated when reversible.
What this forum highlights is not everyone is aware of serious side affects and in the case of the article I quoted it was evident not even the specialists all knew that Velcade can cause breathing problems. So if a patient develops this a doctor may not recognise it as due to the treatment drug.
Edna
It is great that your husband was s rigorously monitored during a clinical trial at the institution the trial was held. The standards of reporting reactions can vary even with clinical trials and a lot depends on whether clinical staff notice changes too and actively elicit information.
As you rightly point out each patient will differ and the sensitivity with which adverse reactions, however mild, are picked up fast will be important in assessing any treatment drug for general safety across a wide and diverse patient population for who it will be used.
You are right, in tackling this disease to give us life for as long as possible the price we may pay is to deal with adverse reactions which have to be assessed and treated when reversible.
What this forum highlights is not everyone is aware of serious side affects and in the case of the article I quoted it was evident not even the specialists all knew that Velcade can cause breathing problems. So if a patient develops this a doctor may not recognise it as due to the treatment drug.
Edna
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