My husband was diagnosed in December 2018 and has 17p.
He completed 4 cycles of Kyprolis, Revlimid, and dexamethasone (KRD) and has severe shortness of breath. He had his 2nd full set of pulmonary function tests at the end of April, and his breathing (diffusion) has gotten worse since the 1st ones in March. He was supposed to have a stem cell transplant in June, but now that's been delayed due to his breathing.
His bone marrow biopsy, urine test, etc. all show great results. In March, they reduced his fluids, but did not reduce the dosage on any meds. He didn't have breathing problems prior to these drugs. Now we're trying to see the pulmonologist again. There will be no transplant if we can't get this resolved. The cardiologist said his heart is in great shape.
Will a longer break from KRD help?
Would appreciate any suggestions, not sure what else to do.
Forums
4 posts
• Page 1 of 1
Re: Difficulty breathing from KRD - what can be done?
Hi mhkds,
Welcome to the forum. I'm sorry to hear about your husband's situation.
You might want to read through this thread:
"Shortness of breath from Kyprolis - will it go away?" (started March 26, 2015)
Assuming for now that Kyprolis is to blame for your husband's dyspnea, I'm wondering if you might consider having the doctor switch from Kyprolis to a different proteasome inhibitor such as Velcade or Ninlaro (although both of these drugs also list shortness of breath as a possible side effect)?
Alternatively, you might consider discussing a completely different drug regimen that doesn't use a proteasome inhibitor, but holds some promise for patients with high-risk cytogenetics such as del 17p. One possibility is Darzalex + Revlimid + dexamethasone (DRd). For DRd, you might want to look at the results of the POLLUX clinical trial:
Weisel, K, et al, "Efficacy of daratumumab in combination with lenalidomide plus dexamethasone (DRd) or bortezomib plus dexamethasone (DVd) in relapsed or refractory multiple myeloma (RRMM) based on cytogenetic risk status," Journal of Clinical Oncology 35, no. 15_suppl (May 20 2017) 8006-8006 (ASCO 2017 abstract 8006) (abstract)
Welcome to the forum. I'm sorry to hear about your husband's situation.
You might want to read through this thread:
"Shortness of breath from Kyprolis - will it go away?" (started March 26, 2015)
Assuming for now that Kyprolis is to blame for your husband's dyspnea, I'm wondering if you might consider having the doctor switch from Kyprolis to a different proteasome inhibitor such as Velcade or Ninlaro (although both of these drugs also list shortness of breath as a possible side effect)?
Alternatively, you might consider discussing a completely different drug regimen that doesn't use a proteasome inhibitor, but holds some promise for patients with high-risk cytogenetics such as del 17p. One possibility is Darzalex + Revlimid + dexamethasone (DRd). For DRd, you might want to look at the results of the POLLUX clinical trial:
Weisel, K, et al, "Efficacy of daratumumab in combination with lenalidomide plus dexamethasone (DRd) or bortezomib plus dexamethasone (DVd) in relapsed or refractory multiple myeloma (RRMM) based on cytogenetic risk status," Journal of Clinical Oncology 35, no. 15_suppl (May 20 2017) 8006-8006 (ASCO 2017 abstract 8006) (abstract)
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Difficulty breathing from KRD - what can be done?
I had 6 months of high-dose Kyprolis, cyclophosphamide, and dexamethasone. Following a further 6 months of Kyprolis-only maintenance, I started getting breathing difficulties, which after a few weeks became severe.
Initially, I was diagnosed as having a laryngeal spasm (by my myeloma specialist) and given an asthma spray. It had zero effect.
A couple of weeks later, after an episode of literally not being able to breathe in or out for 30 seconds or so it seemed, I did get my breath back enough to get myself to accident & emergency (A&E) department.
They checked my trachea with a camera, then a PET scan. I had a growth in the upper trachea. The post-op biopsy diagnosed myeloma growing there. I was put on high dose cyclophosphamide, Revlimid, and dexamethasone for 6 months, then one month of radiotherapy. Following a whole body diffusion-weighted MRI, I was all clear everywhere, and I'm currently enjoying complete remission and on Revlimid and dexamethasone maintenance.
Although my breathing difficulty case was and is very rare, the moral of the story here is to be ultra vigilant with breathing difficulties.
Be particularly concerned if you think a symptom is stridor.
Initially, I was diagnosed as having a laryngeal spasm (by my myeloma specialist) and given an asthma spray. It had zero effect.
A couple of weeks later, after an episode of literally not being able to breathe in or out for 30 seconds or so it seemed, I did get my breath back enough to get myself to accident & emergency (A&E) department.
They checked my trachea with a camera, then a PET scan. I had a growth in the upper trachea. The post-op biopsy diagnosed myeloma growing there. I was put on high dose cyclophosphamide, Revlimid, and dexamethasone for 6 months, then one month of radiotherapy. Following a whole body diffusion-weighted MRI, I was all clear everywhere, and I'm currently enjoying complete remission and on Revlimid and dexamethasone maintenance.
Although my breathing difficulty case was and is very rare, the moral of the story here is to be ultra vigilant with breathing difficulties.
Be particularly concerned if you think a symptom is stridor.
-
igoldsmid - Name: Ian
- Age at diagnosis: 62
Re: Difficulty breathing from KRD - what can be done?
Sorry to hear about your husband's problems, mhkds. I think you're doing the right thing by consulting with a pulmonologist now that you've ruled out the possibility of heart issues being the source of the problem.
The Kyprolis prescribing information does say that the drug can be the cause of lung problems:
"Acute Respiratory Distress Syndrome (ARDS), acute respiratory failure, and acute diffuse infiltrative pulmonary disease such as pneumonitis and interstitial lung disease have occurred in less than 1% of patients receiving Kyprolis. Some events have been fatal. In the event of drug-induced pulmonary toxicity, discontinue Kyprolis"
( https://www.accessdata.fda.gov/drugsatfda_docs/label/2018/202714s017lbl.pdf )
So the issue could be truly lung-related.
Whatever the problem is, I hope that a solution can be found. Let us know what you learn from the pulmonologist.
Ian - Glad you're doing better now. That's quite an experience you went through!
The Kyprolis prescribing information does say that the drug can be the cause of lung problems:
"Acute Respiratory Distress Syndrome (ARDS), acute respiratory failure, and acute diffuse infiltrative pulmonary disease such as pneumonitis and interstitial lung disease have occurred in less than 1% of patients receiving Kyprolis. Some events have been fatal. In the event of drug-induced pulmonary toxicity, discontinue Kyprolis"
( https://www.accessdata.fda.gov/drugsatfda_docs/label/2018/202714s017lbl.pdf )
So the issue could be truly lung-related.
Whatever the problem is, I hope that a solution can be found. Let us know what you learn from the pulmonologist.
Ian - Glad you're doing better now. That's quite an experience you went through!
4 posts
• Page 1 of 1
Return to Treatments & Side Effects