My 65 year old mother just passed away January 12, 2013 after receiving 5 rounds of treatment. My father and I want to bring to the attention that there may be a link of the side effects experienced may ahve been signs of leading patient into respiratory distress, stroke, respiratory arrest and cardiac death.
My mother after a 7 year battle was running out of options and we knew there weren't many other choices left. She was tired and the doctor convinced her to be the first patient at the Cooper Cancer Center in Camden new Jersey to try this new drug. She finally said yes after the holidays and started at the beginning of this year.
She had never experienced such reactions as harsh as what Kyprolis has given her. Increasing nausea and weakness from vomiting leading to her having to receive IV supplements due to not being able to keep nourishment of any form down. Then increasing headaches worse than migraines which we believe were the onset of stroke-like symptoms eventually leading to one.
She was so weak and told the doctors that this drug was far too strong in the dose given to her weighing on 100 pounds. Each day brought mouth ulcers and increased in number and severity of how painful they were. She explained to the doctors and they claimed that she was probably biting herself in the night, which she indicated not true due to the fact that she couldn't sleep due to the headaches and that each treatment brought more sores out.
Just prior to her last treatment and just days after her final round of 5 she also advised them of a severe nosebleed which has never happened to her before with any Revlimid, Velcade or thalidomide regiment or combo. She finally was found in respiratory distress and unresponsive in her bed , hospice was notified per doctors orders and they indicated the signs of a stroke were present as well where she had one side foot contracted and one hand opposite side contracted.
They said there was nothing the ER would be able to do to bring her out of it and she had passed the next morning. We are currently in review with the manufacturer Onyx to see if there needs to be certain dosage recommendations changed or more testing to see if there is a pattern.
Please be a constant monitor and patient advocate and listen to the signs that could be pre-cursors to a more serious event. God Bless and stay in the FIGHT !!I
Jason Pastuch
Forums
Re: Kyprolis / carfilzomib warning signs
Wow Jason, I am so sorry for your mother's suffering. Kyprolis for the refractory and resistant patients has only recently been approved by the FDA. Even though it has had numerous clinical trials, some side effects may only now show up due to it is being distributed to a wider population.
Ron
Ron
-
Ron Harvot - Name: Ron Harvot
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2009
- Age at diagnosis: 56
Re: Kyprolis / carfilzomib warning signs
Hi Jason,
I am extending my condolences.
You could be absolutely right. Here are some of the side effects including respiratory problems and cardiac death.
http://www.drugs.com/sfx/kyprolis-side-effects.html
You need to report it to the FDA if you suspect it's drug/medication related. They have a special website for that.
As my husband says "years down the line we probably look back at certain medical treatments and term them 'barbaric' "
Kate
I am extending my condolences.
You could be absolutely right. Here are some of the side effects including respiratory problems and cardiac death.
http://www.drugs.com/sfx/kyprolis-side-effects.html
You need to report it to the FDA if you suspect it's drug/medication related. They have a special website for that.
As my husband says "years down the line we probably look back at certain medical treatments and term them 'barbaric' "
Kate
-
Kate - Name: Kate
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: Dec. 2012
Re: Kyprolis / carfilzomib warning signs
Jason,
Sorry to hear about all your Mother. If possible please keep us updated on this important issue. Hopefully Onyx will take this issue seriously. There does appear to be some patients that have cardiac problems with this drug. In this small trial of newly diagnosed patients, 10% experienced Grade 3/4 heart failure and 10% experienced Grade 3/4 dyspnea (shortness of breath). It is on page 13.
"N Korde & O Landgren, "Phase II: Carfilzomib, Lenalidomide, and Dexamethasone in Newly Diagnosed Multiple Myeloma", ASH 2012 Annual Meeting Abstract #732 (slides; PDF)
Lets hope they can come up with less toxic drugs or dare we dream a cure in the near future from this terrible disease.
Mark
Sorry to hear about all your Mother. If possible please keep us updated on this important issue. Hopefully Onyx will take this issue seriously. There does appear to be some patients that have cardiac problems with this drug. In this small trial of newly diagnosed patients, 10% experienced Grade 3/4 heart failure and 10% experienced Grade 3/4 dyspnea (shortness of breath). It is on page 13.
"N Korde & O Landgren, "Phase II: Carfilzomib, Lenalidomide, and Dexamethasone in Newly Diagnosed Multiple Myeloma", ASH 2012 Annual Meeting Abstract #732 (slides; PDF)
Lets hope they can come up with less toxic drugs or dare we dream a cure in the near future from this terrible disease.
Mark
-
Mark
Re: Kyprolis / carfilzomib warning signs
Jason,
You mention that she had been on Velcade in the past. Since that drug works in a similar way, do you know if she had any side effects related to her use of it? If so can you describe those?
I am doing well with Velcade now, no PN or any other obvious physical side effects. If I become refractory to Velcade, Kyprolis is a potential option. I think many of us are in the same boat.
Ron
You mention that she had been on Velcade in the past. Since that drug works in a similar way, do you know if she had any side effects related to her use of it? If so can you describe those?
I am doing well with Velcade now, no PN or any other obvious physical side effects. If I become refractory to Velcade, Kyprolis is a potential option. I think many of us are in the same boat.
Ron
-
Ron Harvot - Name: Ron Harvot
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2009
- Age at diagnosis: 56
Re: Kyprolis / carfilzomib warning signs
Sorry to hear about your mother, Jason.
I also recently experienced shortness of breath after receiving Kyprolis, and have posted a question about it here in the forum in the thread, "Dyspnea from Kyprolis - will it go away?".
I also recently experienced shortness of breath after receiving Kyprolis, and have posted a question about it here in the forum in the thread, "Dyspnea from Kyprolis - will it go away?".
Re: Kyprolis / carfilzomib warning signs
Jason,
My condolences to you and your family. I recently lost my mother and there are no words to give you comfort. God bless.
Most of the severe side effects your mother experienced are well documented in the literature. If her issues were a result of improper dosing, the onus is on the physician, not the manufacturer. I am currently in my third cycle of Kyprolis and, fortunately, I am not experiencing any adverse effects. There is no way to predict a patient's response to a drug and there is always an element of risk. A patient needs to weigh the risk benefit ratio when faced with a decision to start a new drug regimen.
I have afib and a prolapsed heart valve and I know that Kyprolis is cardiotoxic. My myeloma is aggressive and resistant to Revlimid and melphalan, and I have severe neuropathy from prior treatment with Velcade. My treatment choices are limited. I tolerate Kyprolis very well and I'm hopeful it will have a positive impact on my disease.
The drugs we use to treat myeloma are powerful agents, and they come with a litany of adverse effects. As patients we are eager to learn about new agents in the wings for treating myeloma, and hopeful that something will be available when we become refractory to available treatments. How much testing / clinical trials are enough before these new agents become available, and there is no way to predict a drug will become "barbaric" many years down the road.
My condolences to you and your family. I recently lost my mother and there are no words to give you comfort. God bless.
Most of the severe side effects your mother experienced are well documented in the literature. If her issues were a result of improper dosing, the onus is on the physician, not the manufacturer. I am currently in my third cycle of Kyprolis and, fortunately, I am not experiencing any adverse effects. There is no way to predict a patient's response to a drug and there is always an element of risk. A patient needs to weigh the risk benefit ratio when faced with a decision to start a new drug regimen.
I have afib and a prolapsed heart valve and I know that Kyprolis is cardiotoxic. My myeloma is aggressive and resistant to Revlimid and melphalan, and I have severe neuropathy from prior treatment with Velcade. My treatment choices are limited. I tolerate Kyprolis very well and I'm hopeful it will have a positive impact on my disease.
The drugs we use to treat myeloma are powerful agents, and they come with a litany of adverse effects. As patients we are eager to learn about new agents in the wings for treating myeloma, and hopeful that something will be available when we become refractory to available treatments. How much testing / clinical trials are enough before these new agents become available, and there is no way to predict a drug will become "barbaric" many years down the road.
-
Dano - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Jan 2014
- Age at diagnosis: 65
Re: Kyprolis / carfilzomib warning signs
Jason,
I am so sorry to read about your mother's experience.
I wanted to add my own cardiopulmonary experience with carfilzomib so that people will be continue to be aware.
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.
I am so sorry to read about your mother's experience.
I wanted to add my own cardiopulmonary experience with carfilzomib so that people will be continue to be aware.
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.
-
Tracy J - Name: Tracy Jalbuena
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2014
- Age at diagnosis: 42
Re: Kyprolis / carfilzomib warning signs
Sorry to read about this, Tracy J.
I had mentioned in my 2013 post above (I have been posting here for a long time!) that I thought it was very significant that 10% of the smoldering patients had Grade 3/4 heart failure, 20% had LFT elevation, and 10% dyspnea. The studies authors did not seem to think this was important! These are patients that had no prior therapy so it was clear which therapy was causing this problem. It is not hard to imagine this could be higher in relapsed patients.
Let's hope they can come up with less toxic therapies in the future.
I had mentioned in my 2013 post above (I have been posting here for a long time!) that I thought it was very significant that 10% of the smoldering patients had Grade 3/4 heart failure, 20% had LFT elevation, and 10% dyspnea. The studies authors did not seem to think this was important! These are patients that had no prior therapy so it was clear which therapy was causing this problem. It is not hard to imagine this could be higher in relapsed patients.
Let's hope they can come up with less toxic therapies in the future.
-
Mark11
Re: Kyprolis / carfilzomib warning signs
My husband has been on Kyprolis, Cytoxan [cyclophosphamide] and dex since January and has no adverse effects from it thus far. In March they actually placed him on the highest dose 56mm/m2 and he continues to tolerate it well. His cardiac function and markers are tested regularly.
The doctors are actually more concerned with the damage the Kyprolis can have on his kidneys, therefore he must take acetylcysteine (mucomyst) starting the day before his first Kyprolis infusion. So far so good on the kidney function as his latest creatinine level was .82 and his EFGR >60.
I believe if you are going to be on Kyprolis you should insist on comprehensive monitoring throughout.
The doctors are actually more concerned with the damage the Kyprolis can have on his kidneys, therefore he must take acetylcysteine (mucomyst) starting the day before his first Kyprolis infusion. So far so good on the kidney function as his latest creatinine level was .82 and his EFGR >60.
I believe if you are going to be on Kyprolis you should insist on comprehensive monitoring throughout.
-
Melanie - Name: Melanie
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: July 2014
- Age at diagnosis: 54
14 posts
• Page 1 of 2 • 1, 2
Return to Treatments & Side Effects