Hi everyone.
Let me first say that I am incredibly grateful for this forum and everything I’ve learned here. Thank you so much to everyone that posts and everyone who runs it. It certainly makes a terrible experience a little less scary. There is so much empathy and compassion here, and I hope I can contribute with my experience in the future.
I live in beautiful New York City. I'm engaged to a beautiful woman and luckily my job allows me the space to fight this battle. I'm lucky to have her and trusted friends around who have been my support these months.
I was diagnosed last December at NYU Langone medical center. I was also told I have the p17 deletion abnormality.
I went through four cycles of Velcade, Revlimid, and dexamethasone. Then the readings plateaued and my oncologist switched me to Kyprolis (carfilzomib) instead of Velcade for three cycles.
That got me to an IgG of 1590 mg/dL, down from 2960 mg/dL in January.
Last week I went for a bone marrow biopsy in preparation for an autologous stem cell transplant. It showed I’m at 10%.
So the doctor has recommended I go through a course of VTD-PACE (Velcade, thalidomide, and dexamethasone, and cisplatin, doxorubicin, cyclophosphamide, and etoposide). Then Neupogen shots and an auto stem cell transplant in November.
What worries me is I’ve heard mixed opinions about VTD-PACE. I’m 42 years old and in otherwise good health. I exercise regularly. Have shown no kidney damage. My metabolic panels are normal. Aside from a couple of instances in which I had to take antibiotics to stave off infection, I haven’t had any major issues while on treatment, thankfully.
I would greatly appreciate any insights into what to expect with this regimen in terms of efficacy, side effects, or unique aspects of the treatment. I read that certain places prefer not to do this regimen.
When I asked the doctor why this was needed instead of maybe more cycles of Kyprolis, he replied that this would allow better collection of the stem cells right away, and he believed it would knock out the remaining disease better. And he also wants to get to the transplant quickly, as this is the holy grail of treatment. Also, he said he would not need to do another bone marrow biopsy.
I’m just trying to get more info on all this. I also plan on finding other doctors to consult. However, I’m not sure I have the resources to attempt treatment somewhere else, such as the Mayo Clinic. Don’t know how people accomplish that, but I highly suspect they have better insurance than mine. But maybe it's possible.
NYU has been great though, and I don’t really have any cause to doubt them from what I’ve seen. I hope this opinion is shared by others.
Anyways, thank you for reading this. I guess from my rambling you can tell I’m not exactly at ease.
Forums
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NYpatient - Name: NY Myeloma Patient
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 41
Re: VTD-PACE - what to expect?
Hello NY:
About 2 or 3 years ago, we were where you are now in terms in being newly diagnosed, and in terms of our research. If you want an idea of what a standard approach would be, the Mayo Clinic publishes the MSmart guidelines for newly diagnosed multiple myeloma (link)
Your doctor very well may be right on what to do, however, in my opinion, he/she is going "off the reservation" somewhat by bringing in VDT-PACE at this time. On the other hand, I do understand driving a deep response. Was there any discussion of an autologous stem cell transplant (ASCT)?
Good luck to you.
About 2 or 3 years ago, we were where you are now in terms in being newly diagnosed, and in terms of our research. If you want an idea of what a standard approach would be, the Mayo Clinic publishes the MSmart guidelines for newly diagnosed multiple myeloma (link)
Your doctor very well may be right on what to do, however, in my opinion, he/she is going "off the reservation" somewhat by bringing in VDT-PACE at this time. On the other hand, I do understand driving a deep response. Was there any discussion of an autologous stem cell transplant (ASCT)?
Good luck to you.
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JPC - Name: JPC
Re: VTD-PACE - what to expect?
Not an expert by any means, but I'll share what experience we have had. My husband was diagnosed with multiple myeloma (also 17p-) 5.5 years ago. He had his auto transplant 5 years ago at Mayo. His doctor felt his M-spike was higher than he would like it to be (pre-transplant), so he gave him a dose of Cytoxan pre- transplant, and then the usual high-dose melphalan as part of the transplant process.
He has been on various treatments post transplant. Last summer his myeloma got kind of out of control (M-spike 4.something g/dL), so he underwent 2 rounds of D-PACE (the same as VDT-PACE, but minus the Velcade and thalidomide). This is known to be a rough treatment to go through, but he did quite well, and it knocked his M-spike down to 1.0.
I would recommend that you get a second opinion with a myeloma specialist before you make your decision. I think just about any insurance company would pay for that. You are lucky that you live in New York City and probably would not need to travel.
He has been on various treatments post transplant. Last summer his myeloma got kind of out of control (M-spike 4.something g/dL), so he underwent 2 rounds of D-PACE (the same as VDT-PACE, but minus the Velcade and thalidomide). This is known to be a rough treatment to go through, but he did quite well, and it knocked his M-spike down to 1.0.
I would recommend that you get a second opinion with a myeloma specialist before you make your decision. I think just about any insurance company would pay for that. You are lucky that you live in New York City and probably would not need to travel.
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rumnting - Who do you know with myeloma?: husband
- When were you/they diagnosed?: 4/9/11
- Age at diagnosis: 54
Re: VTD-PACE - what to expect?
Thank you for your quick replies!
JPC: Yes, he says he'd like to do the VTD-PACE and immediately after start the autologous stem cell transplant process.
The more I think about it, the more I think I owe it to myself to see other doctors. Even if just for peace of mind.
JPC: Yes, he says he'd like to do the VTD-PACE and immediately after start the autologous stem cell transplant process.
The more I think about it, the more I think I owe it to myself to see other doctors. Even if just for peace of mind.
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NYpatient - Name: NY Myeloma Patient
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 41
Re: VTD-PACE - what to expect?
Here is a list of multiple myeloma treatment centers by state.
You want an oncologist who specializes in multiple myeloma, not just a general hematologist / oncologist. The general hem/oncs are usually not as up on the most current research and treatments. They just don't see enough multiple myeloma patients to be as well informed.
You want an oncologist who specializes in multiple myeloma, not just a general hematologist / oncologist. The general hem/oncs are usually not as up on the most current research and treatments. They just don't see enough multiple myeloma patients to be as well informed.
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rumnting - Who do you know with myeloma?: husband
- When were you/they diagnosed?: 4/9/11
- Age at diagnosis: 54
Re: VTD-PACE - what to expect?
Hi NYPatient,
It is very important to be comfortable with the doctors who are treating you. However, most myeloma specialists do not have positive outcomes with deletion 17p patients. I have never used VTD-PACE and do not know if it would help in your situation, but you should be looking to do things considered "off the reservation". I applaud your current doctor for thinking outside the box. I am a high risk patient who did everything the "myeloma thought leaders" say not to do, and I am having a great outcome. Do not be afraid to treat different from the way "everyone else" does unless you want the outcome "everyone else" with del(17p) is having.
Mark
It is very important to be comfortable with the doctors who are treating you. However, most myeloma specialists do not have positive outcomes with deletion 17p patients. I have never used VTD-PACE and do not know if it would help in your situation, but you should be looking to do things considered "off the reservation". I applaud your current doctor for thinking outside the box. I am a high risk patient who did everything the "myeloma thought leaders" say not to do, and I am having a great outcome. Do not be afraid to treat different from the way "everyone else" does unless you want the outcome "everyone else" with del(17p) is having.
Mark
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Mark11
Re: VTD-PACE - what to expect?
Hello again, NY:
I shy away from giving specific recommendations. I try to raise suggestions on options for people still getting up to speed on their research.
For deletion 17p, I personally believe it is more important than in other settings to get to a complete response, and better minimal residual disease (MRD) negative (which right now you are having some issue with).
Regarding new agents, data is still early (they are still new of course), but I believe early data on Kyprolis indicates better activity against deletion 17p than some of the older agents. So even though you did not get the best possible response from Kyprolis, I think its probably good to have been exposed to it.
Another very interesting point about Kyprolis is the issue of plateau. It's my understanding that some of the researchers involved with Kyprolis point out that while other agents stop working at some point, additional rounds of Kyprolis, even if it's going down slow, does seem to keep slowly driving down the M-spike, and it takes longer for Kyprolis (in the Kyprolis, Revlimid, and dexamethasone regimen) to plateau. I have had a researcher advise that they seem to have some activity up to about 16 rounds in patients where they have tried it. At that point, it becomes an issue if you can tolerate it. So I am suggesting that keeping with Kyprolis until it clearly plateaus, could be an option.
Early data on Darzalex (daratumumab) and Empliciti (elotuzumab) also indicate good activity with deletion 17p.
Good luck to you.
I shy away from giving specific recommendations. I try to raise suggestions on options for people still getting up to speed on their research.
For deletion 17p, I personally believe it is more important than in other settings to get to a complete response, and better minimal residual disease (MRD) negative (which right now you are having some issue with).
Regarding new agents, data is still early (they are still new of course), but I believe early data on Kyprolis indicates better activity against deletion 17p than some of the older agents. So even though you did not get the best possible response from Kyprolis, I think its probably good to have been exposed to it.
Another very interesting point about Kyprolis is the issue of plateau. It's my understanding that some of the researchers involved with Kyprolis point out that while other agents stop working at some point, additional rounds of Kyprolis, even if it's going down slow, does seem to keep slowly driving down the M-spike, and it takes longer for Kyprolis (in the Kyprolis, Revlimid, and dexamethasone regimen) to plateau. I have had a researcher advise that they seem to have some activity up to about 16 rounds in patients where they have tried it. At that point, it becomes an issue if you can tolerate it. So I am suggesting that keeping with Kyprolis until it clearly plateaus, could be an option.
Early data on Darzalex (daratumumab) and Empliciti (elotuzumab) also indicate good activity with deletion 17p.
Good luck to you.
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JPC - Name: JPC
Re: VTD-PACE - what to expect?
Hello NYPatient,
I don't know if you are still deciding whether to pursue the VTD-PACE regimen prior to your transplant. If so, I thought I would mentioned a couple of things.
One is that the specialist recommending VTD-PACE may be doing so to avoid having you be on a Revlimid regimen for too long. Some specialists get concerned about prolonged Revlimid therapy prior to a transplant because Revlimid can lower stem cell mobilization yields. It doesn't happen often, and some specialists feel it's not even an issue, but in extreme cases the lowered yield could be significant enough to cause stem cell harvest failure. This means that the patient can't proceed to the stem cell transplant that had been planned
The other thing I wanted to pass along an abstract that I came across that examines VTD-PACE in situations very similar to your own. A link to the abstract, as well as the complete text, is at the end of this post. The authors of the abstract conclude:
"Our results confirm the efficacy of VDTPACE in newly diagnosed and relapsed/refractory patients. Importantly this regimen can safely be used to salvage patients with an insufficient response to conventional first-line therapy. VDTPACE had no impact on stem cell mobilization, and was well tolerated with no treatment-related deaths reported."
When you have a chance, let us know what you decided to do, and how things have gone.
Good luck!
Reference:
Sriskandarajah, P, et al, "Retrospective Cohort Analysis Examining the Efficacy and Safety of (V)DTPACE in Newly Diagnosed and Relapsed/Refractory Myeloma Patients – the UK Experience," Clinical Lymphoma Myeloma & Leukemia, Sep 2016 (abstract)
Abstract:
Context
Multiple myeloma remains incurable in spite of advances in treatment. In UK, combination of dexamethasone, thalidomide, cisplatin, doxorubicin, cyclophosphamide and etoposide (DTPACE) continues to play a role in patients with relapsed/refractory multiple myeloma (RRMM), as bridge to transplant or for rapid tumor bulking. Recently, bortezomib has been included (VDTPACE), following favorable results from the TT3 study. However results outside the Arkansas group have been rarely reported.
Objective
Assess response rates and tolerability in myeloma patients treated with (V)DTPACE at Royal Marsden Hospital (RMH).
Design and Setting
Retrospective analysis of all myeloma patients treated with (V)DTPACE at RMH between 1st June 2010 and 1st June 2015 was performed.
Main Outcome Measures
Primary objective was overall response rate (ORR) defined as ≥PR. Secondary objectives included toxicities (as per CTCAE v4.0 criteria), progression-free survival and overall survival.
Results
Between 2010 and 2015, 53 patients received DTPACE and 26 received VDTPACE. All were screened for cardiac and renal disease pre-treatment. Median age was 55 years with male predominance (61%). 9% patients received treatment upfront due to high-risk disease features, 10% were primary refractory (<PR) to first-line therapy, while the rest (81%) had RRMM, receiving a median 2 (range 2-8) prior lines of therapy.
19% received 1 (V)DTPACE, 73% received 2 and 8% received 3 cycles. 62% proceeded to transplant of which 4 failed to mobilize stem cells. Mean stem cell harvest was 2.64x106/kg.
ORR (≥PR) observed following DTPACE and VDTPACE was 57% and 73% respectively.
Commonly reported toxicities included Grade 3≥ neutropenia (94%) and Grade 3≥ thrombocytopenia (48%). No thrombo-embolic events or grade 3≥ neuropathy were reported.
At analysis, 49% patients were alive with no treatment-related mortalities reported. Survival data is currently being analyzed.
Conclusion
Our results confirm the efficacy of VDTPACE in newly diagnosed and relapsed/refractory patients. Importantly this regimen can safely be used to salvage patients with an insufficient response to conventional first-line therapy. VDTPACE had no impact on stem cell mobilization, and was well tolerated with no treatment-related deaths reported.
I don't know if you are still deciding whether to pursue the VTD-PACE regimen prior to your transplant. If so, I thought I would mentioned a couple of things.
One is that the specialist recommending VTD-PACE may be doing so to avoid having you be on a Revlimid regimen for too long. Some specialists get concerned about prolonged Revlimid therapy prior to a transplant because Revlimid can lower stem cell mobilization yields. It doesn't happen often, and some specialists feel it's not even an issue, but in extreme cases the lowered yield could be significant enough to cause stem cell harvest failure. This means that the patient can't proceed to the stem cell transplant that had been planned
The other thing I wanted to pass along an abstract that I came across that examines VTD-PACE in situations very similar to your own. A link to the abstract, as well as the complete text, is at the end of this post. The authors of the abstract conclude:
"Our results confirm the efficacy of VDTPACE in newly diagnosed and relapsed/refractory patients. Importantly this regimen can safely be used to salvage patients with an insufficient response to conventional first-line therapy. VDTPACE had no impact on stem cell mobilization, and was well tolerated with no treatment-related deaths reported."
When you have a chance, let us know what you decided to do, and how things have gone.
Good luck!
Reference:
Sriskandarajah, P, et al, "Retrospective Cohort Analysis Examining the Efficacy and Safety of (V)DTPACE in Newly Diagnosed and Relapsed/Refractory Myeloma Patients – the UK Experience," Clinical Lymphoma Myeloma & Leukemia, Sep 2016 (abstract)
Abstract:
Context
Multiple myeloma remains incurable in spite of advances in treatment. In UK, combination of dexamethasone, thalidomide, cisplatin, doxorubicin, cyclophosphamide and etoposide (DTPACE) continues to play a role in patients with relapsed/refractory multiple myeloma (RRMM), as bridge to transplant or for rapid tumor bulking. Recently, bortezomib has been included (VDTPACE), following favorable results from the TT3 study. However results outside the Arkansas group have been rarely reported.
Objective
Assess response rates and tolerability in myeloma patients treated with (V)DTPACE at Royal Marsden Hospital (RMH).
Design and Setting
Retrospective analysis of all myeloma patients treated with (V)DTPACE at RMH between 1st June 2010 and 1st June 2015 was performed.
Main Outcome Measures
Primary objective was overall response rate (ORR) defined as ≥PR. Secondary objectives included toxicities (as per CTCAE v4.0 criteria), progression-free survival and overall survival.
Results
Between 2010 and 2015, 53 patients received DTPACE and 26 received VDTPACE. All were screened for cardiac and renal disease pre-treatment. Median age was 55 years with male predominance (61%). 9% patients received treatment upfront due to high-risk disease features, 10% were primary refractory (<PR) to first-line therapy, while the rest (81%) had RRMM, receiving a median 2 (range 2-8) prior lines of therapy.
19% received 1 (V)DTPACE, 73% received 2 and 8% received 3 cycles. 62% proceeded to transplant of which 4 failed to mobilize stem cells. Mean stem cell harvest was 2.64x106/kg.
ORR (≥PR) observed following DTPACE and VDTPACE was 57% and 73% respectively.
Commonly reported toxicities included Grade 3≥ neutropenia (94%) and Grade 3≥ thrombocytopenia (48%). No thrombo-embolic events or grade 3≥ neuropathy were reported.
At analysis, 49% patients were alive with no treatment-related mortalities reported. Survival data is currently being analyzed.
Conclusion
Our results confirm the efficacy of VDTPACE in newly diagnosed and relapsed/refractory patients. Importantly this regimen can safely be used to salvage patients with an insufficient response to conventional first-line therapy. VDTPACE had no impact on stem cell mobilization, and was well tolerated with no treatment-related deaths reported.
Re: VTD-PACE - what to expect?
I ended up doing 3 rounds of VTD-PACE after the Revlimid, Velcade, and dexamethasone (RVD) regimen prior to my auto transplant. I could not get an adequate response to RVD. The VTD-PACE is not a pleasant regimen, but it worked to get my numbers low enough to proceed.
I failed my stem cell collection after the VTD-PACE, but ultimately did well with etoposide. The initial collection failure may have had to do with the doctor trying to get my count (can't remember the term) high enough, and then he missed the window.
Best of luck with the path you choose.
Cindy
I failed my stem cell collection after the VTD-PACE, but ultimately did well with etoposide. The initial collection failure may have had to do with the doctor trying to get my count (can't remember the term) high enough, and then he missed the window.
Best of luck with the path you choose.
Cindy
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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: VTD-PACE - what to expect?
Hello, Cindy:
Since you are checking in, I hope all is good with your allo? Would that be the case?
Best Regards,
Since you are checking in, I hope all is good with your allo? Would that be the case?
Best Regards,
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JPC - Name: JPC
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