Carfilzomib and dex did not work for our daughter. Allo transplant was proposed, but now even that is on hold. Going to University of Penn hospital on Friday to hear about clinical trials.
Velcade and dex put her in CR and that was followed by auto SCT. In remission for about 16 months with Revlimid, but then upping the amount didn't work. Velcade gave her an irregular heartbeat and Revlimid no longer works. Carfilzomib didn't work, so now to see what the new plan is.
Yesterday was 3 years since diagnosis, which, looking back, I actually think she had for about a year earlier, but being 32 years old, no one suspected.
Good luck.
Forums
Re: Kyprolis (carfilzomib) Experiences?
I was on a clinical trial with CRD for two years, reached sCR, then went drug free and started relapsing about a year ago. I went on Revlimid maintenance and have been able to sustain a stable response to date.
I have talked with two oncologists about my next treatment options and for various reasons will most likely try pomalidomide (Pomalyst), dexamethasone, and carfilzomib (PDC). It is available to me as a regular treatment option or as part of a clinical trial. For those resistant to CRD, or particularly Revlimid, this may be another option.
I have talked with two oncologists about my next treatment options and for various reasons will most likely try pomalidomide (Pomalyst), dexamethasone, and carfilzomib (PDC). It is available to me as a regular treatment option or as part of a clinical trial. For those resistant to CRD, or particularly Revlimid, this may be another option.
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Kevin J - Name: Kevin J
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: Jan 2011
- Age at diagnosis: 52
Re: Kyprolis (Carfilzomib) Experiences?
Tracy,
I had a similar path where, after 4 months of RVD, I had almost a complete relapse. I then did two rounds of CTD-PACE (where the first C = carfilzomib). I had no untoward side effects.
The second round, however, I had an allergic reaction to the carfilzomib where I became very flushed, started having breathing trouble, and got the most intense bone pain imaginable. I did not get the additional doses after that. The doctors are not calling it an allergy, but I don't know that I will ever get it again.
I did finally get a big drop in my kappa light chains (1600 to 68) and my marrow plasma cell percentage dropped below 10% for the first time ever. I will get both of those tested again next week after my stem cell collection (which, hopefully, will be successful - it's the second attempt).
Good luck!
I had a similar path where, after 4 months of RVD, I had almost a complete relapse. I then did two rounds of CTD-PACE (where the first C = carfilzomib). I had no untoward side effects.
The second round, however, I had an allergic reaction to the carfilzomib where I became very flushed, started having breathing trouble, and got the most intense bone pain imaginable. I did not get the additional doses after that. The doctors are not calling it an allergy, but I don't know that I will ever get it again.
I did finally get a big drop in my kappa light chains (1600 to 68) and my marrow plasma cell percentage dropped below 10% for the first time ever. I will get both of those tested again next week after my stem cell collection (which, hopefully, will be successful - it's the second attempt).
Good luck!
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CindyBrown - Name: Cindy Brown
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 4/26/14
- Age at diagnosis: 48
Re: Kyprolis (Carfilzomib) Experiences?
Hi TracyJ,
Sorry to read that RVD did not provide a long remission for you and that you have been unable to find a suitable donor for transplant. I could not agree more with this comment:
"However, Dr. Laubach at DFCI is still recommending an allo. And, honestly, for someone my age, even if the risk / benefit calculation regarding allo does change some, what's the alternative anyway?!?!"
This a good time for me to ask everyone to mention to the younger, healthier people they know to consider signing up to become a stem cell donor. You can go to http://bethematch.org/ for details. A healthy donor can do what my donor did for me. I would hate to think how / if I would be living if I was not fortunate enough to have a matched unrelated donor.
Mark
Sorry to read that RVD did not provide a long remission for you and that you have been unable to find a suitable donor for transplant. I could not agree more with this comment:
"However, Dr. Laubach at DFCI is still recommending an allo. And, honestly, for someone my age, even if the risk / benefit calculation regarding allo does change some, what's the alternative anyway?!?!"
This a good time for me to ask everyone to mention to the younger, healthier people they know to consider signing up to become a stem cell donor. You can go to http://bethematch.org/ for details. A healthy donor can do what my donor did for me. I would hate to think how / if I would be living if I was not fortunate enough to have a matched unrelated donor.
Mark
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Mark11
Re: Kyprolis (Carfilzomib) Experiences?
Well, so far I've had two full weeks of carfilzomib / Revlimid / dex, and the side effects are overall better for me than for Velcade. I've had no nausea (they give me Kytril [granisetron] before every dose), my diarrhea and constipation have stabilized (thank goodness!), and my fatigue seems overall a bit better than when I was on Velcade / Revlimid / dex. Also, now I don't have those annoying burn-like things in my skin on my abdomen from the subcutaneous injections of the Velcade.
I had a power port placed last Monday because carfilzomib is all IV and it's two days per week. Between that, Zometa and blood draws, that's too many vein sticks. So the worst part about my first week of carfilzomib was accessing the port, because it was still healing. It was too fresh to use a topical numbing agent, and the pocket where the hub is was so tender, and the nurse has to put quite a bit of pressure on it to get the needle into the hub. That was about a 6 / 10 on the pain scale, but it was short lived.
But the second week was sooooooo much better, better than an IV stick, almost nothing at all, and that wasn't even with any numbing cream. Then I was sure the chemo was going in the right place, and my arms and hands were free to do stuff like knit and type while I was in the chemo chair. So now I can say the port is great. Waaaaaay convenient and safer than IVs.
But returning to carfilzomib itself - they do say that the side effects are cumulative, so we'll see what happens week after week as time goes by.
I had a power port placed last Monday because carfilzomib is all IV and it's two days per week. Between that, Zometa and blood draws, that's too many vein sticks. So the worst part about my first week of carfilzomib was accessing the port, because it was still healing. It was too fresh to use a topical numbing agent, and the pocket where the hub is was so tender, and the nurse has to put quite a bit of pressure on it to get the needle into the hub. That was about a 6 / 10 on the pain scale, but it was short lived.
But the second week was sooooooo much better, better than an IV stick, almost nothing at all, and that wasn't even with any numbing cream. Then I was sure the chemo was going in the right place, and my arms and hands were free to do stuff like knit and type while I was in the chemo chair. So now I can say the port is great. Waaaaaay convenient and safer than IVs.
But returning to carfilzomib itself - they do say that the side effects are cumulative, so we'll see what happens week after week as time goes by.
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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: Kyprolis (Carfilzomib) Experiences?
My husband is just getting ready to start the injection, along with his Revlimid / dex, in 2 days. He is in so much pain. At times he says he wants to die. The pain seems to move from his hips to his shoulders, back, and chest. Is this normal? How long can we expect for this new treatment to start helping him with the pain? I'm desperate for answers!
Stephani - in Alabama
Stephani - in Alabama
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ProudArmyWife
Re: Kyprolis (Carfilzomib) Experiences?
Hello ProudArmyWife,
Welcome to the forum.
I'm so sorry to hear about the pain your husband is experiencing. Has he already had a Kyprolis infusion? Or is he experiencing the pain after being on just Revlimid and dex? Also, has the pain gotten worse during treatment, and is the Revlimid and dex combination the first treatment he received after his myeloma diagnosis?
If you haven't done it already, please make sure your husband's doctor knows about the pain he is experiencing, and please ask if there is anything they can prescribe him to help him control the pain better. He should not have to suffer as he is, and I hope you find a solution for the pain very soon.
Welcome to the forum.
I'm so sorry to hear about the pain your husband is experiencing. Has he already had a Kyprolis infusion? Or is he experiencing the pain after being on just Revlimid and dex? Also, has the pain gotten worse during treatment, and is the Revlimid and dex combination the first treatment he received after his myeloma diagnosis?
If you haven't done it already, please make sure your husband's doctor knows about the pain he is experiencing, and please ask if there is anything they can prescribe him to help him control the pain better. He should not have to suffer as he is, and I hope you find a solution for the pain very soon.
Re: Kyprolis (Carfilzomib) Experiences?
Hi Proud Army Wife,
I am sorry to hear that your husband is in so much pain. Is this because of the medications, or does he also have fractures or other injuries from the myeloma? If so, probably taking bisphosphonate treatments, such as Zometa or Aredia, will help with that, as well as the chemotherapy decreasing the tumour burden.
I agree with Cheryl that you should tell your doctors about the pain. There are some strong medications for pain that could probably help him.
I am sorry to hear that your husband is in so much pain. Is this because of the medications, or does he also have fractures or other injuries from the myeloma? If so, probably taking bisphosphonate treatments, such as Zometa or Aredia, will help with that, as well as the chemotherapy decreasing the tumour burden.
I agree with Cheryl that you should tell your doctors about the pain. There are some strong medications for pain that could probably help him.
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Kyprolis (Carfilzomib) Experiences?
ProudArmyWife,
Sorry to hear of your husband's uncontrolled pain. Please DO NOT accept this as normal. I am not sure if he is a patient of UAB Birmingham or how close you are, but there are very good myeloma specialists there who are good at managing myeloma pain with radiation, bisphosphonates, surgery, narcotics, physical therapy as well as chemo.
Do not give up, your husband should not have to live in constant agony. All my best! BN
Sorry to hear of your husband's uncontrolled pain. Please DO NOT accept this as normal. I am not sure if he is a patient of UAB Birmingham or how close you are, but there are very good myeloma specialists there who are good at managing myeloma pain with radiation, bisphosphonates, surgery, narcotics, physical therapy as well as chemo.
Do not give up, your husband should not have to live in constant agony. All my best! BN
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Bar-none - Who do you know with myeloma?: Me
- When were you/they diagnosed?: 3/14
Re: Kyprolis (Carfilzomib) Experiences?
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
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