Multibilly wrote:
"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."
QOL is important to most people. But a person can have a transplant and still have the same QOL that they had prior to the transplant. It's not guaranteed that a person will sail through the transplant, and I'm assuming that's why some people choose not to have a transplant.
I was diagnosed in June 2013, had 5 cycles of VRD and had a complete response after the 4th cycle.
I could have quit there and not had the transplant, but my goal was to do everything I could to potentially prolong my life. So I went ahead with the transplant in Feb 2014 and I now still have a complete response.
It's now about 5 months post transplant and I feel as good as I did prior to the transplant. The only side effects I have are slight peripheral neuorpathy in my feet which I acquired from the initial 5 cycles of VRD.
Does everyone come out of a transplant as good or better than they were prior to it? No. But many do. Also, I know that age plays a big factor in the decision. For me, it was worth the risk.
Anyway, just another point of view on the transplant vs. no transplant question.
Forums
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DallasGG - Name: Kent
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 6/20/2013
- Age at diagnosis: 56
Re: Non-transplant treatment regimens - what's your thinking
Alex:
Key Messages:
The Affordable Care Act (ACA) requires health insurance companies to cover routine costs associated with approved clinical trials.
Health insurance companies are not required to cover the cost of the treatment or procedure being researched; however, the clinical trial’s sponsor may cover these costs.
Your article.
*****
Multi--Billy , Coach;
Sequencing ( availability) of the newer era drugs may indeed be a difficult "Soft-shoe" to get access to the drugs. Currently, some are designated "Relapse" only...while some are "Front-line".
However, I take your comments to be more in the line of "an All-Star lineup" ...if one could put such a retinue together.
Would alternating Immunlogy based Rx's v Antigenic v Inhibitors v CAR-T be useful ?---As Coach adroitly points out--what if one does not work (as many have found out).
Is there a reasoned "Line-up" one can fashion. ? ( Ie . SMART Paradigm--Mayo Clinic)
Would one factor in, risk Factors --or make it purely individualized ?
Do you have a Paradigm or a Flow -sheet (Stratagem) for your All Star team, in mind ?
Interesting dang concept !
Good luck.
Key Messages:
The Affordable Care Act (ACA) requires health insurance companies to cover routine costs associated with approved clinical trials.
Health insurance companies are not required to cover the cost of the treatment or procedure being researched; however, the clinical trial’s sponsor may cover these costs.
Your article.
*****
Multi--Billy , Coach;
Sequencing ( availability) of the newer era drugs may indeed be a difficult "Soft-shoe" to get access to the drugs. Currently, some are designated "Relapse" only...while some are "Front-line".
However, I take your comments to be more in the line of "an All-Star lineup" ...if one could put such a retinue together.
Would alternating Immunlogy based Rx's v Antigenic v Inhibitors v CAR-T be useful ?---As Coach adroitly points out--what if one does not work (as many have found out).
Is there a reasoned "Line-up" one can fashion. ? ( Ie . SMART Paradigm--Mayo Clinic)
Would one factor in, risk Factors --or make it purely individualized ?
Do you have a Paradigm or a Flow -sheet (Stratagem) for your All Star team, in mind ?
Interesting dang concept !
Good luck.
-
Rneb
Re: Non-transplant treatment regimens - what's your thinking
The original question is a fascinating one.
At this moment, my thinking is to step through drug by drug as newer novel agents are available. If one drug stops working, move on to the next drug, and so on.
The logic behind this is that if you use the other drugs too soon, the multiple myeloma will become resistant to those drugs sooner. (I can be convinced otherwise, just my gut reaction to the question.)
My hope is that the measles virus therapy currently under research will be more of a CURE rather than a treatment, as most drugs are seen today. I am holding out hope also that the newer monoclonal antibodies (mabs) may be CURATIVE rather than just for treatment, but this is yet to be seen.
At this moment, my thinking is to step through drug by drug as newer novel agents are available. If one drug stops working, move on to the next drug, and so on.
The logic behind this is that if you use the other drugs too soon, the multiple myeloma will become resistant to those drugs sooner. (I can be convinced otherwise, just my gut reaction to the question.)
My hope is that the measles virus therapy currently under research will be more of a CURE rather than a treatment, as most drugs are seen today. I am holding out hope also that the newer monoclonal antibodies (mabs) may be CURATIVE rather than just for treatment, but this is yet to be seen.
Re: Non-transplant treatment regimens - what's your thinking
InQ,
Permit me to expand on my thinking, which is inspired by recent papers I've read.
Since myeloma is such a heterogeneous disease and full of so many different clonal lines, starting "light" (if you want to call drug combos like RVd a "light treatment", which is certainly a disservice to this powerful, life-saving combo of a proven IMID and proteasome inhibitor), "may" be a mistake.
I say this since a "light" treatment will only lead to selecting for more the most resistant clonal lines that you will have to combat down the road. Instead, you ought to be searching for the most potent drug regimen as a front-line treatment (of course, balancing QOL issues as Coach Hoke points out) and not reserving the newer drugs for R/R treatment.
So, I used to also think that "graduating" to the newer novel agents as they became approved was the way to go (just as you outlined in your response) ... but maybe not? Maybe I should just go for broke with a newer drug combo based on the sketchy, initial trial data of some of the newer drugs?
This overall reasoning of hammering the disease hard upfront is not new and is one of the key reasons folks argue for transplants. But, suffice it to say, I am not willing to consider a transplant ... and I'd rather this thread not get into another transplant vs. non-transplant discussion.
So, I'm therefore struggling to find the best upfront drug strategy given the sparse data on the new drug combos that have recently come on to the market.
Permit me to expand on my thinking, which is inspired by recent papers I've read.
Since myeloma is such a heterogeneous disease and full of so many different clonal lines, starting "light" (if you want to call drug combos like RVd a "light treatment", which is certainly a disservice to this powerful, life-saving combo of a proven IMID and proteasome inhibitor), "may" be a mistake.
I say this since a "light" treatment will only lead to selecting for more the most resistant clonal lines that you will have to combat down the road. Instead, you ought to be searching for the most potent drug regimen as a front-line treatment (of course, balancing QOL issues as Coach Hoke points out) and not reserving the newer drugs for R/R treatment.
So, I used to also think that "graduating" to the newer novel agents as they became approved was the way to go (just as you outlined in your response) ... but maybe not? Maybe I should just go for broke with a newer drug combo based on the sketchy, initial trial data of some of the newer drugs?
This overall reasoning of hammering the disease hard upfront is not new and is one of the key reasons folks argue for transplants. But, suffice it to say, I am not willing to consider a transplant ... and I'd rather this thread not get into another transplant vs. non-transplant discussion.
So, I'm therefore struggling to find the best upfront drug strategy given the sparse data on the new drug combos that have recently come on to the market.
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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
Thanks for your reply to my earlier posting, Multibilly, and for the additional postings you've made since then. I think you've started a useful discussion.
I'll pick up on your most recent posting, because it basically builds on your response to my posting.
I think the potential flaw in the argument you've just made to InQ is that it can be turned against you.
If using "light" upfront approaches to treatment leaves behind slightly more resistant myeloma subclones, then using "heavy" upfront approaches leaves behind really resistant myeloma subclones.
That is, unless the "heavy" approach is curative (wiping out all myeloma subclones), those subclones that will be left will be particularly nasty.
So, when relapse occurs after the heavy approach, it will probably be a very tough-to-treat relapse.
And that's why understanding the overall survival of such the "heavy" approach, not just the PFS, is important.
I agree with you, by the way, that this thread shouldn't be turned into a debate about transplantation. That's not its purpose. However ... and I'm sure you sensed a "however" coming! ... in defense of those who posted on that subject, you kind of invited such postings by arguing against transplantation based on QOL considerations.
I'll pick up on your most recent posting, because it basically builds on your response to my posting.
I think the potential flaw in the argument you've just made to InQ is that it can be turned against you.
If using "light" upfront approaches to treatment leaves behind slightly more resistant myeloma subclones, then using "heavy" upfront approaches leaves behind really resistant myeloma subclones.
That is, unless the "heavy" approach is curative (wiping out all myeloma subclones), those subclones that will be left will be particularly nasty.
So, when relapse occurs after the heavy approach, it will probably be a very tough-to-treat relapse.
And that's why understanding the overall survival of such the "heavy" approach, not just the PFS, is important.
I agree with you, by the way, that this thread shouldn't be turned into a debate about transplantation. That's not its purpose. However ... and I'm sure you sensed a "however" coming! ... in defense of those who posted on that subject, you kind of invited such postings by arguing against transplantation based on QOL considerations.
Re: Non-transplant treatment regimens - what's your thinking
I would think that whether you go with a "light" upfront approach or "heavy" upfront approach, the same subclones might develop anyway. Wouldn't the "light" upfront approach theorically leave more of the disease to mutate over time. With the "heavy" approach, yeah you might have some more resistant disease left over, but wouldn't that resistant disease still be there with the "light" approach anyway? At least by hitting the disease hard upfront, you're wiping out as much as you can and potentially getting a longer PFS and longer overall survival.
Correct me if I'm wrong, but it seems like more studies (not all) are coming to the conclusion that hitting the disease hard upfront gives better long term outcomes. But if quality of life is more important to a person even if you end up with a few less years to live, then you would probably base your treatment decision on that.
But like I said in another post previously in this thread, just because you hit the disease hard upfront, you don't necessarily end up with a lower quality of life. In many cases, it's the same or better. And, yes, it can be worse. That's the hard part not knowing what your individual outcome will be.
The way I look at it, I was willing to risk suffering a little more upfront. If I get 2-3 more years of inactive / low level disease before I relapse, then it was probably worth it for me. But that's just me.
Nothing is guaranteed in life and sometimes with multiple myeloma treatments I feel like I'm in a guessing game and it's somewhat of a crap shoot. One can only make their best guess as to what might work the best for themselves and one size does not fit all. Unfortunately most of the newly diagnosed patients won't find out if they've guessed correctly until several years into the future.
As far as using the new drugs for treatment, keep in mind that some of the "new" drugs are just later versions of older drugs with fewer side effects. The way that these newer versions of old drugs treat the disease might not be much different that the previous version of that drug ... other than you hopefully will have fewer side effects.
Correct me if I'm wrong, but it seems like more studies (not all) are coming to the conclusion that hitting the disease hard upfront gives better long term outcomes. But if quality of life is more important to a person even if you end up with a few less years to live, then you would probably base your treatment decision on that.
But like I said in another post previously in this thread, just because you hit the disease hard upfront, you don't necessarily end up with a lower quality of life. In many cases, it's the same or better. And, yes, it can be worse. That's the hard part not knowing what your individual outcome will be.
The way I look at it, I was willing to risk suffering a little more upfront. If I get 2-3 more years of inactive / low level disease before I relapse, then it was probably worth it for me. But that's just me.
Nothing is guaranteed in life and sometimes with multiple myeloma treatments I feel like I'm in a guessing game and it's somewhat of a crap shoot. One can only make their best guess as to what might work the best for themselves and one size does not fit all. Unfortunately most of the newly diagnosed patients won't find out if they've guessed correctly until several years into the future.
As far as using the new drugs for treatment, keep in mind that some of the "new" drugs are just later versions of older drugs with fewer side effects. The way that these newer versions of old drugs treat the disease might not be much different that the previous version of that drug ... other than you hopefully will have fewer side effects.
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DallasGG - Name: Kent
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 6/20/2013
- Age at diagnosis: 56
Re: Non-transplant treatment regimens - what's your thinking
DallasGG, TerryH, Dan in NY, and Julie - Great, realistic posts from patients that have actually been treated for myeloma.
DallasGG - Thanks for bringing some reality to the discussion and pointing out this inaccurate notion that transplants lead to a poor long term QOL for most blood cancer patients. I could point to multiple peer reviewed studies that show long term transplant survivors having QOL on par with the general population. Those studies are of allo transplant survivors but those patients have used high dose chemotherapy like auto patients do. It seems obvious to me that myeloma patients that get long therapy breaks and that are in remission have the best quality of life long term. I associate doctors that do not do transplants and need to keep their patients on continuous therapy with providing their patients with less than optimal QOL based on the peer reviewed studies I read. I put more weight on peer reviewed studies than I do on promotional Youtube videos.
Dan in NY - I could not agree more with this comment:
"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."
The best way to keep a thread "on-topic" is to avoid statements like this:
"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."
It is great that sharp posters like DallasGG that have actually used the therapies take the time to post their experiences with them. I am sure newly diagnosed patients find that very helpful. My doctor puts long term QOL of her patients front and center. That is why she discusses partially t cell depleted allos with her younger patients. As she told me soon after diagnosis, nothing improves the quality of life of a blood cancer more than potentially curing them of their disease.
Mark
DallasGG - Thanks for bringing some reality to the discussion and pointing out this inaccurate notion that transplants lead to a poor long term QOL for most blood cancer patients. I could point to multiple peer reviewed studies that show long term transplant survivors having QOL on par with the general population. Those studies are of allo transplant survivors but those patients have used high dose chemotherapy like auto patients do. It seems obvious to me that myeloma patients that get long therapy breaks and that are in remission have the best quality of life long term. I associate doctors that do not do transplants and need to keep their patients on continuous therapy with providing their patients with less than optimal QOL based on the peer reviewed studies I read. I put more weight on peer reviewed studies than I do on promotional Youtube videos.
Dan in NY - I could not agree more with this comment:
"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."
The best way to keep a thread "on-topic" is to avoid statements like this:
"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."
It is great that sharp posters like DallasGG that have actually used the therapies take the time to post their experiences with them. I am sure newly diagnosed patients find that very helpful. My doctor puts long term QOL of her patients front and center. That is why she discusses partially t cell depleted allos with her younger patients. As she told me soon after diagnosis, nothing improves the quality of life of a blood cancer more than potentially curing them of their disease.
Mark
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Mark
Re: Non-transplant treatment regimens - what's your thinking
Again, to be clear, I am asking this question specifically based on the fact that I will not entertain a transplant as an upfront therapy. Given that constraint, I am looking for advice on the optimal front-line, drug-only regimes...and clearly QOL issues must be factored in as I ponder one drug-only treatment over another.
I appreciate the all of the earlier comments, especially wrt to how the proposal of hitting the disease harder up front with the latest drugs may actually work against me. That's good food for thought and a nice talking point that I can have with my specialist(s). Thanks again.
I appreciate the all of the earlier comments, especially wrt to how the proposal of hitting the disease harder up front with the latest drugs may actually work against me. That's good food for thought and a nice talking point that I can have with my specialist(s). Thanks again.
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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
Thanks everyone for the additional comments. I'm enjoying this discussion.
I also think that we've talked enough about transplantation in the thread that we can let the topic rest at this point, especially given that it explicitly was NOT supposed to be the subject of the thread.
(Also, if you're concerned about giving equal airtime in the thread to the different views on transplantation, I think that, if anything, Multibilly deserves a chance to share more about his views on the subject. Although I wouldn't advise that!)
Multibilly - 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.
The merit in the "heavy" approach, and I'll drop the quotes around "heavy" and "light" from now on, is that myeloma survival has increased over time precisely as upfront treatments have gotten better at getting patients into deeper and deeper responses, including CR and now MRD negative status.
Transplantation was one of the approaches that generated these deeper responses. Upfront combination therapies also generated deeper responses. Using novel agents also generated deeper responses.
But, during this time, there was another trend that was occurring that makes it less clear whether it really was the deeper response rates that were the cause of the increased overall survival. Quite simply, new treatment options were coming on board, and new treatment options also mean more things to use when a patient relapses.
So was it just the deeper responses upfront that caused the improved overall survival that has occurred? Or was it just having more treatment options for both upfront and treatment at relapse?
I also think that we've talked enough about transplantation in the thread that we can let the topic rest at this point, especially given that it explicitly was NOT supposed to be the subject of the thread.
(Also, if you're concerned about giving equal airtime in the thread to the different views on transplantation, I think that, if anything, Multibilly deserves a chance to share more about his views on the subject. Although I wouldn't advise that!)
Multibilly - 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.
The merit in the "heavy" approach, and I'll drop the quotes around "heavy" and "light" from now on, is that myeloma survival has increased over time precisely as upfront treatments have gotten better at getting patients into deeper and deeper responses, including CR and now MRD negative status.
Transplantation was one of the approaches that generated these deeper responses. Upfront combination therapies also generated deeper responses. Using novel agents also generated deeper responses.
But, during this time, there was another trend that was occurring that makes it less clear whether it really was the deeper response rates that were the cause of the increased overall survival. Quite simply, new treatment options were coming on board, and new treatment options also mean more things to use when a patient relapses.
So was it just the deeper responses upfront that caused the improved overall survival that has occurred? Or was it just having more treatment options for both upfront and treatment at relapse?
Re: Non-transplant treatment regimens - what's your thinking
I am not so sure if "light" vs "heavy" is a good way to describe how these novel therapies work.
From my understanding, each of the novel therapies targets a certain protein in the monoclonal cell. However, the monoclonal cell may mutate, where the initial target is no longer available, yet other targets are available. It's not necessarily light vs heavy, just a different way of attacking the cell.
From my understanding, each of the novel therapies targets a certain protein in the monoclonal cell. However, the monoclonal cell may mutate, where the initial target is no longer available, yet other targets are available. It's not necessarily light vs heavy, just a different way of attacking the cell.
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