Mark:
Thank you very much for the update and good luck with your (and your doc's) approach.
Forums
Re: Treatment with Kyprolis, Pomalyst, and dex
Mark W,
I was on carfilzomib (Kyprolis), Revlimid, and dex (CRD) for two years as part of a trial study for my initial treatment. My side effects were similar to what you are experiencing and lasted the entire two years. I would also feel a bit off the day after my second day of infusion each week and the effects were less at the beginning of a cycle after my system had flushed out during my week off, and got worse toward the end of the cycle as the drugs seemed to accumulate during the cycle. I always had GI issues, varying between constipation and diarrhea throughout the week, and even now as I am on just Revlimid and dexamethasone.
It has taken me about five years to finally have found the right combination of diet and supplements such that the effects are much more moderate now and don't vary between extremes as they use to. Fortunately, the side effects throughout all my treatments have been very tolerable, particularly compared to what a lot of others with multiple myeloma go through.
Good luck with your treatment.
I was on carfilzomib (Kyprolis), Revlimid, and dex (CRD) for two years as part of a trial study for my initial treatment. My side effects were similar to what you are experiencing and lasted the entire two years. I would also feel a bit off the day after my second day of infusion each week and the effects were less at the beginning of a cycle after my system had flushed out during my week off, and got worse toward the end of the cycle as the drugs seemed to accumulate during the cycle. I always had GI issues, varying between constipation and diarrhea throughout the week, and even now as I am on just Revlimid and dexamethasone.
It has taken me about five years to finally have found the right combination of diet and supplements such that the effects are much more moderate now and don't vary between extremes as they use to. Fortunately, the side effects throughout all my treatments have been very tolerable, particularly compared to what a lot of others with multiple myeloma go through.
Good luck with your treatment.
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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: Treatment with Kyprolis, Pomalyst, and dex
Thank you Kevin. That is very encouraging.
As an update, my down week seems to have been a bit of an anomaly as I'm feeling great again this week as I close out cycle 3. I also got my blood test results and the M-spike is down to 0.7 g/dL (7 g/L). That is about an 86% reduction since starting all treatments in November 2015 and about an 80% drop since starting Kyprolis.
As an update, my down week seems to have been a bit of an anomaly as I'm feeling great again this week as I close out cycle 3. I also got my blood test results and the M-spike is down to 0.7 g/dL (7 g/L). That is about an 86% reduction since starting all treatments in November 2015 and about an 80% drop since starting Kyprolis.
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Mark Pouley - Name: Mark
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: April 2015
- Age at diagnosis: 53
Re: Treatment with Kyprolis, Pomalyst, and dex
Just got my high dose and it was not too bad at all. Drank a ton of water and chewed on 4 cups of ice and 3 popsicles. I continued to chew on ice for about 2 additional hours as I felt it would not hurt. Ate chicken sandwich, applesauce, Graham crackers, and a few cookies for lunch and pasta with chicken sausage for dinner.
My only issue is that they gave me dex and I am lying in bed at 2 a.m. awake.
On to stem cell infusion tomorrow.
My only issue is that they gave me dex and I am lying in bed at 2 a.m. awake.
On to stem cell infusion tomorrow.
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Tigerboy74 - Name: Mike
- Who do you know with myeloma?: Me and few others
- When were you/they diagnosed?: 2007
- Age at diagnosis: 32
Re: Treatment with Kyprolis, Pomalyst, and dex
Tigerboy: Hope you skate through it. Good luck.
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JPC - Name: JPC
Re: Treatment with Kyprolis, Pomalyst, and dex
Time for another update.
It appears I may have hit a plateau with the current treatment as the M-spike is 0.6 g/dL on May 6 after falling to 0.7 g/dL last month. I finished off cycle 4 following this blood draw, and I'm scheduled for a 5th cycle to start May 20. I think I may still see a bit more response, but not likely a big change in the numbers at this point. I will speak to my doctor on May 20, and I expect we will move forward scheduling my stem cell transplant for June following the 5th cycle of KPd.
I've handled this treatment really well. I've only had a slight increase in my fatigue, and I've had nearly no GI issues other than the regular constipation following the Kyprolis induction (which may actually be related to IV Zofran). While we all want to see numbers as low as possible, wouldn't ZERO be nice, I have to feel good about this response and I'm ready to go to the next step.
It appears I may have hit a plateau with the current treatment as the M-spike is 0.6 g/dL on May 6 after falling to 0.7 g/dL last month. I finished off cycle 4 following this blood draw, and I'm scheduled for a 5th cycle to start May 20. I think I may still see a bit more response, but not likely a big change in the numbers at this point. I will speak to my doctor on May 20, and I expect we will move forward scheduling my stem cell transplant for June following the 5th cycle of KPd.
I've handled this treatment really well. I've only had a slight increase in my fatigue, and I've had nearly no GI issues other than the regular constipation following the Kyprolis induction (which may actually be related to IV Zofran). While we all want to see numbers as low as possible, wouldn't ZERO be nice, I have to feel good about this response and I'm ready to go to the next step.
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Mark Pouley - Name: Mark
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: April 2015
- Age at diagnosis: 53
Re: Treatment with Kyprolis, Pomalyst, and dex
This is a topic that also interests me.
I was diagnosed in October of 2016 and started the Velcade, Revlimid and dexamethasone regimen. My M-spike went from from 2.3 g/dL (23 g/l) to 1.4 g/dL (14 g/l) over 7 cycles. It has been plateaued there for a few months.
I went for a stem cell transplant evaluation at Stanford. The recommendation is several cycles of a new drug regimen for a deeper response before transplant. It looks like the recommendation will be Kyprolis, Pomalyst, and dexamethasone.
The Kyprolis, Pomalyst, and dexamethasone regimen seems a bit strong, so I wondering how well tolerated it is likely to be, and what sort of response I can explect.
I was diagnosed in October of 2016 and started the Velcade, Revlimid and dexamethasone regimen. My M-spike went from from 2.3 g/dL (23 g/l) to 1.4 g/dL (14 g/l) over 7 cycles. It has been plateaued there for a few months.
I went for a stem cell transplant evaluation at Stanford. The recommendation is several cycles of a new drug regimen for a deeper response before transplant. It looks like the recommendation will be Kyprolis, Pomalyst, and dexamethasone.
The Kyprolis, Pomalyst, and dexamethasone regimen seems a bit strong, so I wondering how well tolerated it is likely to be, and what sort of response I can explect.
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twoswyfts - Name: Judie
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Oct 4, 2016
- Age at diagnosis: 61
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