Hey Nancy,
I would indeed collect transplant cells after induction. I think it would be folly not to.
Transplants have absolutely saved the lives of some folks on this forum and I'm extremely grateful that several on this forum are living great lives and can participate on this forum because of their life-saving transplants. So, while I have a made a decision not to consider a transplant as an upfront therapy, and I also work with a multiple myeloma specialist that says "never to transplants", who knows where I will be medically 5 or 10 years down the road?
I simply like options ... and I deeply respect those that choose to go down the transplant route up front.
Forums
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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
No worries, Multibilly. I could never have envisioned having a transplant before my diagnosis and had to do a lot of work on my mental health to talk myself into one, but, in my case, it did contribute to my health I think. I have a friend who actually went thru a transplant a year or two before me, so I had some idea as to what was involved.
Good to know you are able to get the stem cells collected though ... I don't think that carries too much hazard or discomfort with it, apart from having to take Neupogen for the harvest and then Ctyoxan (cyclophosphamide). There isn't much that is pleasant in myeloma treatments, but, hey, as long as we can stay healthier than we would have been without treatment, it's all good!
In a way, having SMM is similar to being in a state of 'stable disease', where I am at. I have low levels of detectable M proteins and sometimes SFLC's also. So I do follow all of these discussions with interest. I am not really pro or anti transplant, but did follow the advice of my oncologist, and it has worked out for me so far. It is really difficult to know which way to go. Wish you all the best!
When I think of just how recently the novel agents have been available to most of us, I can see that all the statistics have not yet been gathered as to which treatments work best for each patient.
Good to know you are able to get the stem cells collected though ... I don't think that carries too much hazard or discomfort with it, apart from having to take Neupogen for the harvest and then Ctyoxan (cyclophosphamide). There isn't much that is pleasant in myeloma treatments, but, hey, as long as we can stay healthier than we would have been without treatment, it's all good!
In a way, having SMM is similar to being in a state of 'stable disease', where I am at. I have low levels of detectable M proteins and sometimes SFLC's also. So I do follow all of these discussions with interest. I am not really pro or anti transplant, but did follow the advice of my oncologist, and it has worked out for me so far. It is really difficult to know which way to go. Wish you all the best!
When I think of just how recently the novel agents have been available to most of us, I can see that all the statistics have not yet been gathered as to which treatments work best for each patient.
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Non-transplant treatment regimens - what's your thinking
Multibilly, what's driving the change in your thinking about upfront therapy?
You say you previously thought you would keep the newest drugs in reserve, and stick with more standard treatment regimens for upfront therapy (although I'd hardly call PAd a standard upfront therapy).
Now, you're thinking about doing things differently. Why?
You say you previously thought you would keep the newest drugs in reserve, and stick with more standard treatment regimens for upfront therapy (although I'd hardly call PAd a standard upfront therapy).
Now, you're thinking about doing things differently. Why?
Re: Non-transplant treatment regimens - what's your thinking
Hey Terry,
Perhaps "exploration in thinking" is a better way to word this than "change in thinking", since I've certainly not made up my mind and I also certainly need to do a lot more research and chatting with specialists on this topic.
My investigation is primarily based on some of the recent studies I read on the importance of CR and MRD-Zero as a key metric to shoot for with respect to longer term PFS in a transplant setting. Why not extend that same thinking to a completely non-transplant approach as well? Why not try to factor in the latest, greatest drugs into that thinking?
I mentioned PAd (Pegylated doxorubicin + bortezomib + low dose dex), along with the other, more prevalent regimens like RVd, since one of my specialists mentioned PAd as one of the regimens he would consider for me as a starting point for me a few months back. So, for me personally, PAd is one of the frontline options that I have been considering for some time. But, I would agree that PAd is hardly a mainstream frontline option for multiple myeloma patients, so I stand corrected.
.
Perhaps "exploration in thinking" is a better way to word this than "change in thinking", since I've certainly not made up my mind and I also certainly need to do a lot more research and chatting with specialists on this topic.
My investigation is primarily based on some of the recent studies I read on the importance of CR and MRD-Zero as a key metric to shoot for with respect to longer term PFS in a transplant setting. Why not extend that same thinking to a completely non-transplant approach as well? Why not try to factor in the latest, greatest drugs into that thinking?
I mentioned PAd (Pegylated doxorubicin + bortezomib + low dose dex), along with the other, more prevalent regimens like RVd, since one of my specialists mentioned PAd as one of the regimens he would consider for me as a starting point for me a few months back. So, for me personally, PAd is one of the frontline options that I have been considering for some time. But, I would agree that PAd is hardly a mainstream frontline option for multiple myeloma patients, so I stand corrected.
.
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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
No big deal about PAd, Multibilly. I partly meant that just as a good natured poke. 
I think I understand better what's on your mind and what you want to accomplish with this discussion. Let me know if you feel I'm derailing it.
You mention studies about the importance of CR and MRD status. If those studies are focusing on PFS, do you really want to hang your hat on that as opposed to overall survival? One of the key reasons people advocate for a more tempered approach to upfront therapy is because they believe that its beneficial to *overall* survival They probably would concede that more intensive approaches give you better PFS, but they don't really care. Their focus is overall survival.
Now, as for the benefit of achieving CR or MRD-negative status, how confident do you feel about those results? I believe I read Dr. Rajkumar say here somewhere that it's still an open question whether you are seeing differences in disease between patients who do, and do not, achieve CR or MRD negative status, and those who do not. (I may be taking some liberties with my interpretation of what he said. Perhaps I read too much into what he actually said.)
What you need, it seems to me, is a couple of trials that split similar NDMM patients into a couple of groups, and give them different, but similar, therapies. Group 1 might get XY and Group 2 gets XYZ. Etc. Presumably, Group 2 will show higher CR and MRD negative rates. Group 2 also will probably show better PFS. But will Group 2 also show better OS?
I think the VISTA trial did something like that, didn't it? It tested VMP versus MP and found an overall survival advantage for VMP.
My concern about that trial, though, is that I think it may have been a mainly European trial started when access in Europe to both Velcade and Revlimid may have been somewhat limited. So the overall survival advantage you saw with VMP may just have been because patients in that arm were guaranteed access to a novel agent, while the other patients were not.
Can we come up with other, perhaps better, trials that have tested XYZ versus XY, and provide overall survival data? I think trials of that sort would shed the most light on the kind of questions you are raising.
I think I understand better what's on your mind and what you want to accomplish with this discussion. Let me know if you feel I'm derailing it.
You mention studies about the importance of CR and MRD status. If those studies are focusing on PFS, do you really want to hang your hat on that as opposed to overall survival? One of the key reasons people advocate for a more tempered approach to upfront therapy is because they believe that its beneficial to *overall* survival They probably would concede that more intensive approaches give you better PFS, but they don't really care. Their focus is overall survival.
Now, as for the benefit of achieving CR or MRD-negative status, how confident do you feel about those results? I believe I read Dr. Rajkumar say here somewhere that it's still an open question whether you are seeing differences in disease between patients who do, and do not, achieve CR or MRD negative status, and those who do not. (I may be taking some liberties with my interpretation of what he said. Perhaps I read too much into what he actually said.)
What you need, it seems to me, is a couple of trials that split similar NDMM patients into a couple of groups, and give them different, but similar, therapies. Group 1 might get XY and Group 2 gets XYZ. Etc. Presumably, Group 2 will show higher CR and MRD negative rates. Group 2 also will probably show better PFS. But will Group 2 also show better OS?
I think the VISTA trial did something like that, didn't it? It tested VMP versus MP and found an overall survival advantage for VMP.
My concern about that trial, though, is that I think it may have been a mainly European trial started when access in Europe to both Velcade and Revlimid may have been somewhat limited. So the overall survival advantage you saw with VMP may just have been because patients in that arm were guaranteed access to a novel agent, while the other patients were not.
Can we come up with other, perhaps better, trials that have tested XYZ versus XY, and provide overall survival data? I think trials of that sort would shed the most light on the kind of questions you are raising.
Re: Non-transplant treatment regimens - what's your thinking
Terry,
Good to hear your thoughts, as always.
I think this in turning into a more of a stream-of-consciousness thread for me, so forgive me if I ramble.
To be clear, I would NOT hang my hat on PFS data,even though it was that data (the impressive 33 month elotuzumab PFS stats, in particular) that prompted me to open this question . But since there isn't OS data on these brand spanking new drugs, I'm going with CR and PFS as the two metrics that I can work with as I begin this dialogue with folks on the Beacon and my docs (current and to be sought out). I also believe that these recent trials of new drugs aren't just "focused" on PFS data, but rather there simply hasn't been enough time to get any good OS data yet ... and they are weighted towards R/R patients (which, I can appreciate).
In general, OS stats are what I truly value. So, in this potential situation, I also realize that I would need to take a leap of faith in a trial or some off-label use to proceed down this path since there really aren't good OS stats yet ... which I've not fully come to terms with.
As far as the value of CR and achieving MRD-negative status, I will refer you back to this thread:
https://myelomabeacon.org/forum/stem-cell-transplant-results-t3607.html
"....The following link is a long transcript of a recent FDA/NCI roundtable that bears this out (see p 37 since it is a very long read).
http://www.fda.gov/downloads/MedicalDevices/NewsEvents/WorkshopsConferences/UCM401699.pdf
".... So this is the effect of MRD of a Day 100 assessment following a stem cell transplant. And there's a clear benefit for being MRD negative.There is an approximately 14 month PFS advantage. I think that effect is to an extent partially abrogated by the fact that patients were half of the patients were receiving further therapy in the form of thalidomide maintenance. So when we look at the overall survival benefit, there's quite striking survival benefit for MRD negativity, and there's an almost two year overall survival benefit for being MRD negative in this context"
The Beacon article below bears out the importance of getting to CR in a transplant setting:
Degree Of Complete Response After Transplant May Affect Survival In Myeloma
I haven't really found any trials or summaries that truly help me with getting my head around all this. So, I will be interested to hear what a couple of top specialists I will visit in the coming months will say ... as well as what others on the Beacon have to say now.
Good to hear your thoughts, as always.
I think this in turning into a more of a stream-of-consciousness thread for me, so forgive me if I ramble.
To be clear, I would NOT hang my hat on PFS data,even though it was that data (the impressive 33 month elotuzumab PFS stats, in particular) that prompted me to open this question . But since there isn't OS data on these brand spanking new drugs, I'm going with CR and PFS as the two metrics that I can work with as I begin this dialogue with folks on the Beacon and my docs (current and to be sought out). I also believe that these recent trials of new drugs aren't just "focused" on PFS data, but rather there simply hasn't been enough time to get any good OS data yet ... and they are weighted towards R/R patients (which, I can appreciate).
In general, OS stats are what I truly value. So, in this potential situation, I also realize that I would need to take a leap of faith in a trial or some off-label use to proceed down this path since there really aren't good OS stats yet ... which I've not fully come to terms with.
As far as the value of CR and achieving MRD-negative status, I will refer you back to this thread:
https://myelomabeacon.org/forum/stem-cell-transplant-results-t3607.html
"....The following link is a long transcript of a recent FDA/NCI roundtable that bears this out (see p 37 since it is a very long read).
http://www.fda.gov/downloads/MedicalDevices/NewsEvents/WorkshopsConferences/UCM401699.pdf
".... So this is the effect of MRD of a Day 100 assessment following a stem cell transplant. And there's a clear benefit for being MRD negative.There is an approximately 14 month PFS advantage. I think that effect is to an extent partially abrogated by the fact that patients were half of the patients were receiving further therapy in the form of thalidomide maintenance. So when we look at the overall survival benefit, there's quite striking survival benefit for MRD negativity, and there's an almost two year overall survival benefit for being MRD negative in this context"
The Beacon article below bears out the importance of getting to CR in a transplant setting:
Degree Of Complete Response After Transplant May Affect Survival In Myeloma
I haven't really found any trials or summaries that truly help me with getting my head around all this. So, I will be interested to hear what a couple of top specialists I will visit in the coming months will say ... as well as what others on the Beacon have to say now.
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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
Hey Multibilly,
CR and MRD are probably important in determining OS or PFS; however, QOL needs to be factored in. You don't know how you will respond to any of the treatments until you've tried them. And I understand (I think) that's why you're doing the survey.
CR and MRD are probably important in determining OS or PFS; however, QOL needs to be factored in. You don't know how you will respond to any of the treatments until you've tried them. And I understand (I think) that's why you're doing the survey.
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coachhoke - Name: coachhoke
- When were you/they diagnosed?: Apri 2012
- Age at diagnosis: 71
Re: Non-transplant treatment regimens - what's your thinking
Hey Coach Hoke,
Yep, QOL is paramount. In fact, QOL concerns were pretty central to my original decision to not go with a transplant upfront. It's also what led me to specialists that keep that goal front and center in their treatment plans. My joys in life are backpacking, restoring/fixing cars, doing major projects on my house, etc. I simply can't imagine a life with severe PN or being constantly fatigued. I'd rather trade off a few years of life than be prevented from doing the things I love.
Yep, QOL is paramount. In fact, QOL concerns were pretty central to my original decision to not go with a transplant upfront. It's also what led me to specialists that keep that goal front and center in their treatment plans. My joys in life are backpacking, restoring/fixing cars, doing major projects on my house, etc. I simply can't imagine a life with severe PN or being constantly fatigued. I'd rather trade off a few years of life than be prevented from doing the things I love.
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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
I have - until just recently - embraced only the non-transplant option. I am low risk, have been on BiRd therapy for just over two years, have essentially a normal life, and am at or straddling CR.
I am increasingly convinced, however, that as present therapies currently stand, a substantial fraction of low risk patients can be cured with high dose melphalan.
So rather than obsess about choices, maybe I should consider a transplant and mustard gas if I really want to have a long term view that includes retirement and being a grandfather (I am 52). Otherwise I find myself thinking about relapse and shorter and nastier treatment regimens until the end. And this is the issue - even though James Berenson (whom I have seen and like) believes a median of at least 14 years is expected even without transplant.
I am increasingly convinced, however, that as present therapies currently stand, a substantial fraction of low risk patients can be cured with high dose melphalan.
So rather than obsess about choices, maybe I should consider a transplant and mustard gas if I really want to have a long term view that includes retirement and being a grandfather (I am 52). Otherwise I find myself thinking about relapse and shorter and nastier treatment regimens until the end. And this is the issue - even though James Berenson (whom I have seen and like) believes a median of at least 14 years is expected even without transplant.
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Dan in NY
Re: Non-transplant treatment regimens - what's your thinking
I was diagnosed with Stage 1 multiple myeloma February 15, 2013 (age 49) and started Velcade (shots) and dexamethasone on February 18. I did one round of Vel / dex (2 shots a week for 2 weeks, 1 week off, times 4 cycles) (40mg of dex every week). This dropped my M-spike from 2.3 to 1.8 g/dL.
Then started 2 rounds of Revlimid / dex (21 days of 1 pill a day, 1 week off). M-spike dropped to 1.3 g/dL.
I always knew that I might need a stem cell transplant so I decided that I did not want to keep "pussy footing around" ... let's do it.
I had a stem cell transplant July 15, 2013. I am now in complete remission. I achieved complete remission at my 100th day post stem cell transplant. My first birthday is July 19, 2014.
Then started 2 rounds of Revlimid / dex (21 days of 1 pill a day, 1 week off). M-spike dropped to 1.3 g/dL.
I always knew that I might need a stem cell transplant so I decided that I did not want to keep "pussy footing around" ... let's do it.
I had a stem cell transplant July 15, 2013. I am now in complete remission. I achieved complete remission at my 100th day post stem cell transplant. My first birthday is July 19, 2014.
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Julie Phillips
35 posts
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