My Velcade, Revlimid, and dex (VRD) has kept me at a 0.5 g/dL M-spike from 1.0 g/dL after my relapse. I have had 4 rounds.
I am up for a stem cell transplant and doc moved me to 2 rounds of Kyprolis, Pomalyst, and dex (KPD) as we look to lower the M-spike prior to the transplant.
What have results been for any of you on these new drugs?
Forums
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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
I'm on Pomalyst 2 mg and dex. The Pomalyst quit working after 3 cycles. Pomalyst is now upped to 3 mg. I could not tolerate the 4 mg dose that was initially started.
Have not been put on Kyprolis in the past or combined with Pomalyst and dex – at least not yet.
Good luck
Have not been put on Kyprolis in the past or combined with Pomalyst and dex – at least not yet.
Good luck
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Melpen - Name: Melissa
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: Feb 5, 2014
- Age at diagnosis: 57
Re: Treatment with Kyprolis, Pomalyst, and dex
I relapsed on bortezomib (Velcade), lenalidomide (Revlimid) and dex. So then I was put on carfilzomib (Kyprolis), Revlimid and dex, which controlled my disease well. However, it also gave me heart and lung damage, so I had to stop them.
My oncologist at Dana Farber blames the carfilzomib, and said that he has been seeing heart and lung damage due to carfilzomib more than was reported in the in the published data. I had been having vague feelings of shortness of breath and chest pain. They were so vague and intermittent and always seemed to have another explanation, so I didn't pay as much attention to them as I should have. Also, people tell me I'm a "minimizer". So don't ignore those symptoms if you have them.
Anyway, then I was put on pomalidomide (Pomalyst), cyclophosphamide (Cytoxan) and dex. So far, so good. I haven't had any re-staging yet, but I feel good. I don't have bone pain like I did when I relapsed, and I think the side effects from this are better compared to the previous two regimens. This is as close to normal as I've felt since diagnosis over a year ago, and just to be clear, none of these regimens is maintenance. These regimens are all still induction.
My oncologist at Dana Farber blames the carfilzomib, and said that he has been seeing heart and lung damage due to carfilzomib more than was reported in the in the published data. I had been having vague feelings of shortness of breath and chest pain. They were so vague and intermittent and always seemed to have another explanation, so I didn't pay as much attention to them as I should have. Also, people tell me I'm a "minimizer". So don't ignore those symptoms if you have them.
Anyway, then I was put on pomalidomide (Pomalyst), cyclophosphamide (Cytoxan) and dex. So far, so good. I haven't had any re-staging yet, but I feel good. I don't have bone pain like I did when I relapsed, and I think the side effects from this are better compared to the previous two regimens. This is as close to normal as I've felt since diagnosis over a year ago, and just to be clear, none of these regimens is maintenance. These regimens are all still induction.
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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: Treatment with Kyprolis, Pomalyst, and dex
Hi Tracy.
I am so glad you are feeling the best you have felt since you were diagnosed. It is almost surprising to feel "normal," isn't it? We took feeling good for granted before.
Happy New Year.
Cathy
I am so glad you are feeling the best you have felt since you were diagnosed. It is almost surprising to feel "normal," isn't it? We took feeling good for granted before.
Happy New Year.
Cathy
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antelope1225 - Name: Cathy1225
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: May 25 2012
- Age at diagnosis: 55
Re: Treatment with Kyprolis, Pomalyst, and dex
I started my first treatment after diagnosis with Revlimid, Velcade, and dexamethasone (RVD). After 4 cycles, my onc was not happy with the response and switched me to Kyprolis, Pomalyst, and dex (KPd). Like you, we are looking for a deep response before transplant. I tolerated RVD very well and after my first induction, I'm tolerating this well too. Time will tell. Reading the literature on Kyprolis and Pomalyst, I'm very encouraged about the possible results.
Good luck to you and your treatment.
Good luck to you and your treatment.
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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
I'm wrapping up the first cycle of Kyprolis, Pomalyst, and dex and so far have good results. I've had little to no side effects. Even better, my M-spike went from 3.4 to 1.7 g/dL before the cycle was complete. White cells and neutrophils jumped up into normal ranges (best we've seen in a while), and other measures are all acceptable. I'm starting the off week tomorrow and begin cycle 2 on the 26th. Here's hoping for continued progress.
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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
I met with my doctor on February 26 as my 2nd cycle was scheduled to begin. He is encouraged by our early response to the regimen and now plans to continue with a scheduled 3rd cycle and likely 4-5 cycles before stem cell transplantation.
I'm still experiencing little to no side effects and feel very good. My next blood draw with M-spike will be March 11. Here's hoping for a continued and steady decline in the numbers.
I'm still experiencing little to no side effects and feel very good. My next blood draw with M-spike will be March 11. Here's hoping for a continued and steady decline in the numbers.
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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
I ended up doing 3 cycles with a drop of M-spike from 0.5 to 0.3 and then it held steady. Time for the stem cell transplant! Weird how the M-spike stayed steady without a drop, but I think the high-dose chemo should get the rest of the myeloma out of me!
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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
Good luck with the transplant, Tigerboy74.
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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
Time for an update on treatment. I'm well into the 3rd cycle with a 4th scheduled.
The results have been encouraging as my M-spike went down to 1.1 g/dL (11 g/L) on March 12 (just before the last infusion of cycle 2). I have another blood draw set for Friday and I hope to see more progress. We are definitely moving toward a stem cell transplant this spring (even discussing an allo, but that is the subject of a different post).
Since November I've had little to no side effects from any of the drugs I was taking. That changed a bit this week. Friday and Saturday were my 2nd induction days of this cycle. Sunday I felt a bit "off" for the first time and by Monday I was "sick." My fatigue level hit an all-time high, I was mentally just "out of it" and I experienced pretty bad diarrhea. A slept a good bit of Monday and got a good nights sleep and have felt better the last couple of days, but this is a new experience for me. I don't know if it was these drugs, the cumulative impact of chemo since October, or a combination of everything.
I'm still on track and staying positive, but I thought I would share this bump in the road for anyone tracking this drug combo.
The results have been encouraging as my M-spike went down to 1.1 g/dL (11 g/L) on March 12 (just before the last infusion of cycle 2). I have another blood draw set for Friday and I hope to see more progress. We are definitely moving toward a stem cell transplant this spring (even discussing an allo, but that is the subject of a different post).
Since November I've had little to no side effects from any of the drugs I was taking. That changed a bit this week. Friday and Saturday were my 2nd induction days of this cycle. Sunday I felt a bit "off" for the first time and by Monday I was "sick." My fatigue level hit an all-time high, I was mentally just "out of it" and I experienced pretty bad diarrhea. A slept a good bit of Monday and got a good nights sleep and have felt better the last couple of days, but this is a new experience for me. I don't know if it was these drugs, the cumulative impact of chemo since October, or a combination of everything.
I'm still on track and staying positive, but I thought I would share this bump in the road for anyone tracking this drug combo.
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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
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