So, for those of you who are:
1. Newly diagnosed multiple myeloma (NDMM) or smolderers
2. Have chosen not to go the transplant route, or are at least not considering that path, and
3. Planning out your next steps for possible front line treatment,
what's your current philosophy on which initial treatment / drug combo and approach you will use?
(I'm cutting and pasting my latest thinking from this thread)
"Given my newly found insight on the importance of CR going into a transplant, I'm just trying to get my head around what this might mean for the best non-transplant approach to treatment (which is the route that I will go, should I progress).
"I used to think that keeping some of the new, recent drugs in reserve was the way to go for NDMM patients. But I'm starting to question that approach and wonder if it might be better to instead try to hammer the hell out of all the clonal strains up front with some of the newer drug combos, as opposed to thinking about those newer drugs being something I can fall back on down the road? That is, I was thinking I might do something like VRd (Velcade + Revlimid + dexamethasone) or PAd (Velcade + doxorubicin + dex) as an initial therapy, but I'm now wondering if I might instead reach for something like an elotuzumab or carfilzomib [Kyprolis] combo upfront. This topic might actually be better served with a new thread."
This is a big change in thinking for me, as I was always thinking about graduating to the newer drugs, should I progress to symptomatic multiple myeloma and later become refractory or relapse from the current and popular front-line drug combos (Vd, Rd, VRd, etc).
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
I think your question is similar to mine. After reaching remission, do you stay on maintenance until progression;or do you wait until the m-spike returns? (I've seen Palumbo's studies, but side effects and quality of life muddy the waters.)
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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,
Actually, my question is a bit different. I'm not talking about maintenance options (or whether to do them), but rather the choice of drugs for one's very first front line treatment.
To be clear, I'm asking if folks are thinking about just directly starting their initial drug-only treatment with some of the brand-spanking, newer drugs,as opposed to some of the more common regiments like Rd, Vd, PAd or RVd in the USA?
I also want to be clear that I'm not pitting old drugs against new drugs here. But, some of the newer drugs like elotuzumab have very impressive PFS stats, so I'm thinking about coming in fighting hard with a new drug combo based on something like elotuzumab instead of using these new drugs as my backup in the future.
Also, to be clear, in my situation, I've taken the transplant option off the table, so I'm talking about a purely drug-only path for a NDMM patient.
I've always been thinking about starting with PAd, Rd, Vd or RVd and then having some of these amazing new aces in the hole (Kyprolis, Pomalyst, some of the new MABs, etc) as my next step. But now I am thinking about reversing that thinking.
Honestly, I haven't even thought through the maintenance stage yet, and I was really hoping that there would be more studies out by the time I need to worry about that step
Actually, my question is a bit different. I'm not talking about maintenance options (or whether to do them), but rather the choice of drugs for one's very first front line treatment.
To be clear, I'm asking if folks are thinking about just directly starting their initial drug-only treatment with some of the brand-spanking, newer drugs,as opposed to some of the more common regiments like Rd, Vd, PAd or RVd in the USA?
I also want to be clear that I'm not pitting old drugs against new drugs here. But, some of the newer drugs like elotuzumab have very impressive PFS stats, so I'm thinking about coming in fighting hard with a new drug combo based on something like elotuzumab instead of using these new drugs as my backup in the future.
Also, to be clear, in my situation, I've taken the transplant option off the table, so I'm talking about a purely drug-only path for a NDMM patient.
I've always been thinking about starting with PAd, Rd, Vd or RVd and then having some of these amazing new aces in the hole (Kyprolis, Pomalyst, some of the new MABs, etc) as my next step. But now I am thinking about reversing that thinking.
Honestly, I haven't even thought through the maintenance stage yet, and I was really hoping that there would be more studies out by the time I need to worry about that step
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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 Multibilly,
Very interesting question. Would insurance cover your treatment of choice?
Very interesting question. Would insurance cover your treatment of choice?
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dnalex - Name: Alex N.
- Who do you know with myeloma?: mother
- When were you/they diagnosed?: 2007
- Age at diagnosis: 56
Re: Non-transplant treatment regimens - what's your thinking
Why wouldn't Insurance cover the drugs ?
I presume all drugs in question are FDA approved, or are part of a study. ( that one can join)
Drug treatment, including Novel drugs, depending on the Protocol, is often cheaper than transplants.
MultiBilly--there are some restrictions on some of the drugs you cite. I think some are restricted to 2nd / 3rd generation use (relapse scenarios)--rather than "Up-front" use. Maybe Boris knows the answer to that issue. ?
Good Luck.
I presume all drugs in question are FDA approved, or are part of a study. ( that one can join)
Drug treatment, including Novel drugs, depending on the Protocol, is often cheaper than transplants.
MultiBilly--there are some restrictions on some of the drugs you cite. I think some are restricted to 2nd / 3rd generation use (relapse scenarios)--rather than "Up-front" use. Maybe Boris knows the answer to that issue. ?
Good Luck.
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Rneb
Re: Non-transplant treatment regimens - what's your thinking
Rneb,
I don't think that the answer regarding insurance was that simple. So, I looked it up.
http://www.cancer.net/navigating-cancer-care/how-cancer-treated/clinical-trials/health-insurance-coverage-clinical-trials
Also, whether insurance covers something or not is not made by comparison with the cost of a transplant, so I am not sure that comparison is useful.
I don't think that the answer regarding insurance was that simple. So, I looked it up.
http://www.cancer.net/navigating-cancer-care/how-cancer-treated/clinical-trials/health-insurance-coverage-clinical-trials
Also, whether insurance covers something or not is not made by comparison with the cost of a transplant, so I am not sure that comparison is useful.
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dnalex - Name: Alex N.
- Who do you know with myeloma?: mother
- When were you/they diagnosed?: 2007
- Age at diagnosis: 56
Re: Non-transplant treatment regimens - what's your thinking
I want to take the current FDA approval status, insurance and trial access issues off the table for now and instead just talk about the ideal situation where you would have access to any of the drugs, either currently released or in trial/pipeline. What then would be your ideal front-line treatment for a NDMM patient, assuming we aren't factoring in additional issues like adverse cytognetics, age, etc.?
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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,
The reason I think our questions are similar (upfront vs. maintenance) is that they begs the same questions -- what drugs , for how long, and what if you don't get a complete remission (0 M-spike), plus side effects.
I, like you, chose not to have a stem cell transplant, went with VRD, went from an M-spike 0.9 g/dL to 0.1 g/dL. Side effects: peripheral neuropathy, rash, and deep vein thrombosis.
I discontinued the Velcade and dex but continue with the Revlimid (dose reduced to 2.5mg).
I understand your reluctance to save the V and R and I think it's a great idea if elotuzumbab or carfizomib work for you without the side effects; however you aren't. going to know that, unfortunately, until you try them.
The reason I think our questions are similar (upfront vs. maintenance) is that they begs the same questions -- what drugs , for how long, and what if you don't get a complete remission (0 M-spike), plus side effects.
I, like you, chose not to have a stem cell transplant, went with VRD, went from an M-spike 0.9 g/dL to 0.1 g/dL. Side effects: peripheral neuropathy, rash, and deep vein thrombosis.
I discontinued the Velcade and dex but continue with the Revlimid (dose reduced to 2.5mg).
I understand your reluctance to save the V and R and I think it's a great idea if elotuzumbab or carfizomib work for you without the side effects; however you aren't. going to know that, unfortunately, until you try them.
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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
Ah, now I see where you are coming from Coach Hoke.
It's not so much that I'm scared of V, R and D (although I must admit that I do worry about their side effects...and your personal history is an example of why one should be worried). It's also not like these other brand new drugs don't have their own, potentially serious side effects..they absolutely do. The idea is more simply around just hitting the disease as hard and broadly as you can without doing damage to one's self, as opposed to keeping these brand new drugs in reserve.
From a practical standpoint (I know I said I wanted to take that off the table for now), it looks like one could get into a Carfilzomib trial as a NDMM patient. But Elotuzumab trials for NDMM patients are restricted to NDMM who don't qualify for a transplant (not wanting to do a transplant just doesn't count).
I also would love to hear what the R/R options are for NDMM that start off with Carfilzomib...is it VRd, Pom or something else?
Looking forward to what others have to say that recently debated their front line treatment choices.
It's not so much that I'm scared of V, R and D (although I must admit that I do worry about their side effects...and your personal history is an example of why one should be worried). It's also not like these other brand new drugs don't have their own, potentially serious side effects..they absolutely do. The idea is more simply around just hitting the disease as hard and broadly as you can without doing damage to one's self, as opposed to keeping these brand new drugs in reserve.
From a practical standpoint (I know I said I wanted to take that off the table for now), it looks like one could get into a Carfilzomib trial as a NDMM patient. But Elotuzumab trials for NDMM patients are restricted to NDMM who don't qualify for a transplant (not wanting to do a transplant just doesn't count).
I also would love to hear what the R/R options are for NDMM that start off with Carfilzomib...is it VRd, Pom or something else?
Looking forward to what others have to say that recently debated their front line treatment choices.
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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 Multibilly,
It's interesting to follow your reasoning as you try to resolve your issues vis-a-vis progressing from smoldering myeloma to active myeloma. I hope of course that this does not happen, and thank you for all of the helpful info you look up and provide to others on the forum.
Quick question. Would you still get your stem cells collected after an induction chemo regimen? This would give you a fall back position were you to need, or want, a stem cell transplant in the future. (I know that is not your preference though!)
It's interesting to follow your reasoning as you try to resolve your issues vis-a-vis progressing from smoldering myeloma to active myeloma. I hope of course that this does not happen, and thank you for all of the helpful info you look up and provide to others on the forum.
Quick question. Would you still get your stem cells collected after an induction chemo regimen? This would give you a fall back position were you to need, or want, a stem cell transplant in the future. (I know that is not your preference though!)
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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
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