I was recently diagnosed with multiple myeloma with end stage renal disease in June 2015.
I was on a regimen of Velcade, Cytoxan, and dexamethasone to reduce the kappa chains to prepare for a stem cell transplant.
Well, the kappa chains began to level off and I had a recent spike, so now were are going to a different regimen of carfilzomib (Kyprolis), dexamethasone, and Revlimid, and they expect it to take 3 to 5 months for a response and decrease in kappa chains to move forward with the stem transplant.
What should I expect -- fatigue, nausea, any other symptoms? The doctor allowed me to return work. I was going crazy sitting in house and only going to hemodialysis 3 times week.
I have adjusted to my first 8 cycles of chemo with the help of nausea medication and eating properly. However, is this something someone can do while working and taking these medication.
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Re: Carfilzomib, Revlimid, and dex - what should I expect?
Hi 32motley
I started with Cytoxan, Velcade (bortezomib), and dexamethasone (CyBorD) in October 2014 and had to switch to Kyprolis, Revlimid, and dexamethasone (KRD) in January 2015 because my numbers were only stabilizing. I found the KRD to be much easier to tolerate with limited side effects. On occasion I experienced fatigue and nausea and a headache right after the carfilzomib was administered. I also found the slower they administered the carflizomib, the fewer side affects I had. I requested they administer it over at least a 10 minute period of time. I took my Revlimid at night. I remember reading somewhere that this can help with the fatigue. I worked full time up to my stem cell transplant in August.
Wishing you the best with your treatment.
Rhonda
I started with Cytoxan, Velcade (bortezomib), and dexamethasone (CyBorD) in October 2014 and had to switch to Kyprolis, Revlimid, and dexamethasone (KRD) in January 2015 because my numbers were only stabilizing. I found the KRD to be much easier to tolerate with limited side effects. On occasion I experienced fatigue and nausea and a headache right after the carfilzomib was administered. I also found the slower they administered the carflizomib, the fewer side affects I had. I requested they administer it over at least a 10 minute period of time. I took my Revlimid at night. I remember reading somewhere that this can help with the fatigue. I worked full time up to my stem cell transplant in August.
Wishing you the best with your treatment.
Rhonda
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Rhonda - Who do you know with myeloma?: myself
- When were you/they diagnosed?: September 2014
- Age at diagnosis: 54
Re: Carfilzomib, Revlimid, and dex - what should I expect?
Thank you Rhonda
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32motley - Name: 32motley
- When were you/they diagnosed?: May 2015
- Age at diagnosis: 45
Re: Carfilzomib, Revlimid, and dex - what should I expect?
Hello Antonio:
Just a quick point on working while under treatment. There is no right answer, each has to decide on their own. Many posters in the right circumstance do go back to work. Logistically, it is the case that many people get this at or near retirement age, so its not an issue for them.
The first issue is your desire to work. The second issue is whether you get to a decent remission, or are able to become asymptomatic or near asymptomatic. In your case, I understand it's how well do your kidneys heal. If you have desire and your symptoms subside, then its an issue of the side effects. From what I understand of the KRd regimen, for most people its manageable. Then there is the practicality of your work schedule, as the Kyprolis (K) requires twice weekly transfusions on consecutive days.
As you do your research, in case you do not know, for K there is a concern regarding heart / lung side effects in a relatively small number of patients. Overall, though, it's better than Velcade (particularly with respect to peripheral neuropathy). You probably should get a baseline echo before starting K to be better able to track the onset of any cardio issues (hopefully that would not happen).
Good luck with the new regimen.
Just a quick point on working while under treatment. There is no right answer, each has to decide on their own. Many posters in the right circumstance do go back to work. Logistically, it is the case that many people get this at or near retirement age, so its not an issue for them.
The first issue is your desire to work. The second issue is whether you get to a decent remission, or are able to become asymptomatic or near asymptomatic. In your case, I understand it's how well do your kidneys heal. If you have desire and your symptoms subside, then its an issue of the side effects. From what I understand of the KRd regimen, for most people its manageable. Then there is the practicality of your work schedule, as the Kyprolis (K) requires twice weekly transfusions on consecutive days.
As you do your research, in case you do not know, for K there is a concern regarding heart / lung side effects in a relatively small number of patients. Overall, though, it's better than Velcade (particularly with respect to peripheral neuropathy). You probably should get a baseline echo before starting K to be better able to track the onset of any cardio issues (hopefully that would not happen).
Good luck with the new regimen.
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JPC - Name: JPC
Re: Carfilzomib, Revlimid, and dex - what should I expect?
My wife was diagnosed with multiple myeloma in 2009. She was unable to harvest enough stem cells after being on Revlimid for a period of time. Velcade caused serious neuropathy and she started Kyprolis (carfilzomib). It worked wonders. During her annual meeting with her cardiologist, he suggested she have an echo although she had no symptoms at all. The results indicated an ejection rate of 36 – close to heart failure. Past readings were close to the 60s.
She stopped Kyprolis, went under the care of a cardiologist who works only with chemo patients. Her echo is now back to normal. The moral of the story is even though Kyprolis is a wonderful chemo and it only effects the heart on about 1 percent, periodically get an echo to check.
The best of luck to you.
She stopped Kyprolis, went under the care of a cardiologist who works only with chemo patients. Her echo is now back to normal. The moral of the story is even though Kyprolis is a wonderful chemo and it only effects the heart on about 1 percent, periodically get an echo to check.
The best of luck to you.
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Andy
Re: Carfilzomib, Revlimid, and dex - what should I expect?
32motley,
Andy makes a great point regarding Kyrpolis and getting routinely checked out cardiac-wise. TracyJ (who is an ER doc) had some similar, serious side effects with Kyprolis.
Don't get me wrong. Kyprolis has worked wonders for some folks, but one really needs to be on top of the potential cardiac issues it can cause.
Andy makes a great point regarding Kyrpolis and getting routinely checked out cardiac-wise. TracyJ (who is an ER doc) had some similar, serious side effects with Kyprolis.
Don't get me wrong. Kyprolis has worked wonders for some folks, but one really needs to be on top of the potential cardiac issues it can cause.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
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