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Re: Non-transplant treatment regimens - what's your thinking
InQ. I agree on your comment regarding naming. I just needed to distinguish some of the more common frontline drug combos versus the brand new ones just coming out. One could simply call the former group "x" (Rd, VRd, etc) and the latter group "y" ( MABs, carfilzomib, etc). I wouldn't try to read anything into my use of "heavy" and "light".
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Non-transplant treatment regimens - what's your thinking
Hi. Thought I would add my 2 cents worth to this conversation.
I went through treatment in 2004 with thalidomide and dexamethasone for approximately 10 months and never received a stem cell transplant - either stem or bone marrow. My oncologist advised against it (the bone marrow) due to the high mortality rate.
My oncologist was suffering (unknown to me) from multiple myeloma also and was being treated with one of the newer drugs - I believe it was Revlimid, but I'm not sure. He was unresponsive to the treatment and continued to decline to the point that he stayed away from the Kaiser Hospital. I had to take a new oncologist (who turned out to be a pain; I eventually fired him).
My original oncologist came back and worked 2 days a week for a while, then he took sick again and I moved to another oncologist. I quit receiving e-mail from my first doctor after about 4 weeks. About 6 weeks later, I took my wife in to have her bad knee looked at and ran into my first oncologist's nurse and I ask about his wellbeing. She looked kind of dumbstruck, then said your doctor passed away 2 weeks ago. I found out later that he had allowed them to do a bone marrow transplant and it did not take, leaving him with no immune system .
To this point I have had no further treatment. I do blood tests every 6 months, then see my current oncologist. That appointment is coming up tomorrow. I've seen the results of my blood tests and they still look fairly good, with a couple just out of the normal range. Urine was one of those – guess the kidneys are a little shaky after all the abuse from the drugs and multiple myeloma.
I went through treatment in 2004 with thalidomide and dexamethasone for approximately 10 months and never received a stem cell transplant - either stem or bone marrow. My oncologist advised against it (the bone marrow) due to the high mortality rate.
My oncologist was suffering (unknown to me) from multiple myeloma also and was being treated with one of the newer drugs - I believe it was Revlimid, but I'm not sure. He was unresponsive to the treatment and continued to decline to the point that he stayed away from the Kaiser Hospital. I had to take a new oncologist (who turned out to be a pain; I eventually fired him).
My original oncologist came back and worked 2 days a week for a while, then he took sick again and I moved to another oncologist. I quit receiving e-mail from my first doctor after about 4 weeks. About 6 weeks later, I took my wife in to have her bad knee looked at and ran into my first oncologist's nurse and I ask about his wellbeing. She looked kind of dumbstruck, then said your doctor passed away 2 weeks ago. I found out later that he had allowed them to do a bone marrow transplant and it did not take, leaving him with no immune system .
To this point I have had no further treatment. I do blood tests every 6 months, then see my current oncologist. That appointment is coming up tomorrow. I've seen the results of my blood tests and they still look fairly good, with a couple just out of the normal range. Urine was one of those – guess the kidneys are a little shaky after all the abuse from the drugs and multiple myeloma.
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Nipon Ginko - Name: Nipon Ginko
- Who do you know with myeloma?: ME
- When were you/they diagnosed?: 2004
- Age at diagnosis: 66
Re: Non-transplant treatment regimens - what's your thinking
Hi TerryH,
"For what it's worth, I think there's merit to the idea of hitting the disease hard up front. I'll explain why in a moment. What I don't like is the current feeding frenzy surrounding CR and MRD status. I don't think the science surrounding it is as convincing as those who are feeding the frenzy make it out to be. I also think there are financial and personal motivations playing a part in the frenzy."
I agree that there are financial and personal motivations playing a part in the frenzy. It is clear that you read and value peer reviewed papers. I believe this is the non-allo study with the longest follow up using PCR (molecular) testing for MRD.
"PCR-based minimal residual disease (MRD) analysis is a useful prognostic tool in multiple myeloma (multiple myeloma), although its long-term impact still needs to be addressed. This report presents the updated results of the GIMEMA-VEL-03-096 trial. Thirty-nine multiple myeloma patients receiving bortezomib-thalidomide-dexamethasone after autologous transplantation were monitored for MRD by both nested and real-time quantitative (RQ)-PCR until relapse. Our data confirm the strong impact of MRD on survival: OS was 72% at 8-years median follow-up for patients in major MRD response versus 48% for those experiencing MRD persistence (P=0.041). In addition, MRD kynetics resulted predictive for relapse: indeed median remission duration was not reached for patients in major MRD response, 38 months for those experiencing MRD reappearance and 9 months for patients with MRD persistence (p<0.001). Moreover: 1) the 26 patients achieving major MRD response (67%) benefit of excellent disease control (median TNT: 42 months); 2) MRD reappearance heralds relapse, with a TNT comparable to that of MRD persistence (9 versus 10 months, P=0.706); 3) the median lag between MRD reappearance and need for salvage treatment is 9 months. These results suggest a long-term MRD monitoring in multiple myeloma patients and the need for maintenance or pre-emptive treatments ensuring durable responses."
http://www.ncbi.nlm.nih.gov/pubmed/25027515
The Black Swan initiative is great because it will standardize the test, but so far I have seen no study that shows Flow being more sensitive than PCR. Flow has many advantages over PCR and should become the standard in the short term, but better sensitivity does not appear to be one of the advantages of Flow. Black Swan is a step forward for myeloma but MRD testing for myeloma is hardly a new concept. The reality is that doctors in Europe are far ahead of the doctors in the US with respect to studying MRD in myeloma. I can find multiple European studies with long term follow up with respect to MRD testing.
Mark
"For what it's worth, I think there's merit to the idea of hitting the disease hard up front. I'll explain why in a moment. What I don't like is the current feeding frenzy surrounding CR and MRD status. I don't think the science surrounding it is as convincing as those who are feeding the frenzy make it out to be. I also think there are financial and personal motivations playing a part in the frenzy."
I agree that there are financial and personal motivations playing a part in the frenzy. It is clear that you read and value peer reviewed papers. I believe this is the non-allo study with the longest follow up using PCR (molecular) testing for MRD.
"PCR-based minimal residual disease (MRD) analysis is a useful prognostic tool in multiple myeloma (multiple myeloma), although its long-term impact still needs to be addressed. This report presents the updated results of the GIMEMA-VEL-03-096 trial. Thirty-nine multiple myeloma patients receiving bortezomib-thalidomide-dexamethasone after autologous transplantation were monitored for MRD by both nested and real-time quantitative (RQ)-PCR until relapse. Our data confirm the strong impact of MRD on survival: OS was 72% at 8-years median follow-up for patients in major MRD response versus 48% for those experiencing MRD persistence (P=0.041). In addition, MRD kynetics resulted predictive for relapse: indeed median remission duration was not reached for patients in major MRD response, 38 months for those experiencing MRD reappearance and 9 months for patients with MRD persistence (p<0.001). Moreover: 1) the 26 patients achieving major MRD response (67%) benefit of excellent disease control (median TNT: 42 months); 2) MRD reappearance heralds relapse, with a TNT comparable to that of MRD persistence (9 versus 10 months, P=0.706); 3) the median lag between MRD reappearance and need for salvage treatment is 9 months. These results suggest a long-term MRD monitoring in multiple myeloma patients and the need for maintenance or pre-emptive treatments ensuring durable responses."
http://www.ncbi.nlm.nih.gov/pubmed/25027515
The Black Swan initiative is great because it will standardize the test, but so far I have seen no study that shows Flow being more sensitive than PCR. Flow has many advantages over PCR and should become the standard in the short term, but better sensitivity does not appear to be one of the advantages of Flow. Black Swan is a step forward for myeloma but MRD testing for myeloma is hardly a new concept. The reality is that doctors in Europe are far ahead of the doctors in the US with respect to studying MRD in myeloma. I can find multiple European studies with long term follow up with respect to MRD testing.
Mark
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Mark
Re: Non-transplant treatment regimens - what's your thinking
Hello again,
I wrote my first post back in April 2014 days after my "apocalyptic" sounding diagnosis of 80% plasma involvement, 3.8 M-spike, IgA of 4650, but no cytogenetic abnormalities. I was hell bent on NO treatment and so many of you encouraged me to look forward, seek treatment, and embrace life rather than a painful death. Made sense to me.
The more I learned about stem cell transplantation, the more I understood that this was not, nor would ever be, a route I was willing or able to follow. Living alone in a fairly isolated rural community with no family as support made a SCT a non option. My oncologist and a renowned myeloma specialist at UCSF Cancer Center backed my decision and we chose the CyBorD plus Zometa route.
Three cycles and 15 days into treatment and I am happy to report No detectable M-protein, IgA down to 120, and all blood work within Normal range. I am thrilled! Doc says it is too soon to declare Complete Response, but we are now looking at collecting stem cells "just in case". I still have 6-8 more months of my current regimen with a yet to be determined time of when maintenance Revlimid will be added.
In conclusion, my experience has shown that aggressive initial treatment works for some of us without having to fret over the transplant "horror" stories. I consider myself most fortunate.
Remember, it is your journey, so arm yourself with as much knowledge as possible.
Best wishes to all,
Doug
I wrote my first post back in April 2014 days after my "apocalyptic" sounding diagnosis of 80% plasma involvement, 3.8 M-spike, IgA of 4650, but no cytogenetic abnormalities. I was hell bent on NO treatment and so many of you encouraged me to look forward, seek treatment, and embrace life rather than a painful death. Made sense to me.
The more I learned about stem cell transplantation, the more I understood that this was not, nor would ever be, a route I was willing or able to follow. Living alone in a fairly isolated rural community with no family as support made a SCT a non option. My oncologist and a renowned myeloma specialist at UCSF Cancer Center backed my decision and we chose the CyBorD plus Zometa route.
Three cycles and 15 days into treatment and I am happy to report No detectable M-protein, IgA down to 120, and all blood work within Normal range. I am thrilled! Doc says it is too soon to declare Complete Response, but we are now looking at collecting stem cells "just in case". I still have 6-8 more months of my current regimen with a yet to be determined time of when maintenance Revlimid will be added.
In conclusion, my experience has shown that aggressive initial treatment works for some of us without having to fret over the transplant "horror" stories. I consider myself most fortunate.
Remember, it is your journey, so arm yourself with as much knowledge as possible.
Best wishes to all,
Doug
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Gruncle - Name: Doug
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: Mar.14, 2014
- Age at diagnosis: 64
Re: Non-transplant treatment regimens - what's your thinking
Multibilly,
My husband, the multiple myeloma patient, chose from the beginning not to have an SCT, nor to harvest stem cells. He started with RVD on 2-4-14 and after 5 cycles, there was no measurable Mprotein. After cycle 7, which was 7-8-14, he developed an extensive rash mainly on his arms. We were sure it was caused by Revlimid, his primary care doc said he had "never seen anything like it before." He had already stopped R as it was his week off. It is now drying up but still visible, not much itching. He is supposed to start cycle 8 tomorrow so we are anxious to know if he will continue the RVD. And R was to be his maintenance drug.
Thus, as a non transplant patient, RVD, was the perfect choice for him as a frontline treatment but do not know yet if R will be his maintenance drug.
AnnieB
My husband, the multiple myeloma patient, chose from the beginning not to have an SCT, nor to harvest stem cells. He started with RVD on 2-4-14 and after 5 cycles, there was no measurable Mprotein. After cycle 7, which was 7-8-14, he developed an extensive rash mainly on his arms. We were sure it was caused by Revlimid, his primary care doc said he had "never seen anything like it before." He had already stopped R as it was his week off. It is now drying up but still visible, not much itching. He is supposed to start cycle 8 tomorrow so we are anxious to know if he will continue the RVD. And R was to be his maintenance drug.
Thus, as a non transplant patient, RVD, was the perfect choice for him as a frontline treatment but do not know yet if R will be his maintenance drug.
AnnieB
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