Beacon Staff,
Regarding:
"The progression-free survival numbers we listed above are median progression-free survival from the time of diagnosis",
I think you meant to say "from the time of start of of treatment", not from "time of diagnosis".
Forums
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: NEJM article on transplantation & Revlimid maintenance
Hi Multibilly,
Thanks for the comment.
Although in many studies progression-free survival is measured from the start of treatment, in this study, the authors explicitly report progression-free survival based on the time of diagnosis, rather the start of treatment.
Thanks for the comment.
Although in many studies progression-free survival is measured from the start of treatment, in this study, the authors explicitly report progression-free survival based on the time of diagnosis, rather the start of treatment.
Re: NEJM article on transplantation & Revlimid maintenance
OK, thanks. Drives me nuts (as I'm sure it does you) that so many trial results don't used standardized metrics.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: NEJM article on transplantation & Revlimid maintenance
Wow! I agree with Multibilly. From time of diagnosis vs. time of start of treatment until disease progression certainly muddies the water.
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coachhoke - Name: coachhoke
- When were you/they diagnosed?: Apri 2012
- Age at diagnosis: 71
Re: NEJM article on transplantation & Revlimid maintenance
CoachHoke and Multibilly - We agree that some standardization around progression-free survival reporting would be nice.
In this case, however, it's worth noting that there wouldn't be a big difference between the date when treatment starts and the date of diagnosis, because the patients entered this trial and started treatment as newly diagnosed patients.
We haven't seen numbers on what the average difference is between date of diagnosis and the date when treatment starts in patients enrolled in trials for newly diagnosed patients. However, what would seem like a reasonable average difference -- maybe a month?
In this case, however, it's worth noting that there wouldn't be a big difference between the date when treatment starts and the date of diagnosis, because the patients entered this trial and started treatment as newly diagnosed patients.
We haven't seen numbers on what the average difference is between date of diagnosis and the date when treatment starts in patients enrolled in trials for newly diagnosed patients. However, what would seem like a reasonable average difference -- maybe a month?
Re: NEJM article on transplantation & Revlimid maintenance
Beacon Staff: I see your point about there being little difference between the time of diagnosis and treatment in NDMM patients..
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: NEJM article on transplantation & Revlimid maintenance
So it seems that, based on this study (and I presume other ones as we'll), docs are recommending staying on Revlimid for the rest of your (my) life, or until the side effects are no longer tolerable, or until it becomes refractory, or until disease progression.
My main question is: Why not stop taking it (take a "permanent. holiday") and start again when you have disease progression (assuming you are in at least partial remission)? Then start with Revlimid (add dex and Velcade if necessary).
Thanks,
Coach Hoke
My main question is: Why not stop taking it (take a "permanent. holiday") and start again when you have disease progression (assuming you are in at least partial remission)? Then start with Revlimid (add dex and Velcade if necessary).
Thanks,
Coach Hoke
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coachhoke - Name: coachhoke
- When were you/they diagnosed?: Apri 2012
- Age at diagnosis: 71
Re: NEJM article on transplantation & Revlimid maintenance
Coach Hoke,
I'd hate to speak on behalf of the doctors that did this study, but I think the simplistic rationale for continuous maintenance would be to keep the residual disease from evolving further. By the time one recognized progression during a drug holiday after doing maintenance for awhile, the disease would have evolved further. Treatment would then be more difficult and one would have less of a chance for success in knocking it back down.
However, I also assume that a doctor would be factoring in QOL and toxicity issues while keeping a patient on continuous maintenance. So, if toxicity emerged as an issue during maintenance, I imagine a doc might indeed call for a drug holiday (or seek a different drug or lower dose).
It's curious how some doctors are now arguing for continuous maintenance and some are arguing for a fixed period like 3 years (Lonial, etc), and yet others suggest 2 years (Rajkumar, etc).
For Dr. Rajkumar's thoughts, see:
S Vincent Rajkumar, "Maintenance Therapy in Multiple Myeloma," The ASCO Post, May 1, 2014, Volume 5, Issue 7
I also wonder how low-dose Revlimid became the seemingly default maintenance drug of choice as opposed to low-dose Velcade, etc? Were there ever any maintenance studies that pitted one against the other?
I honestly don't know how I would choose a maintenance period based on all the differing opinions from top specialists out there.
I'd hate to speak on behalf of the doctors that did this study, but I think the simplistic rationale for continuous maintenance would be to keep the residual disease from evolving further. By the time one recognized progression during a drug holiday after doing maintenance for awhile, the disease would have evolved further. Treatment would then be more difficult and one would have less of a chance for success in knocking it back down.
However, I also assume that a doctor would be factoring in QOL and toxicity issues while keeping a patient on continuous maintenance. So, if toxicity emerged as an issue during maintenance, I imagine a doc might indeed call for a drug holiday (or seek a different drug or lower dose).
It's curious how some doctors are now arguing for continuous maintenance and some are arguing for a fixed period like 3 years (Lonial, etc), and yet others suggest 2 years (Rajkumar, etc).
For Dr. Rajkumar's thoughts, see:
S Vincent Rajkumar, "Maintenance Therapy in Multiple Myeloma," The ASCO Post, May 1, 2014, Volume 5, Issue 7
I also wonder how low-dose Revlimid became the seemingly default maintenance drug of choice as opposed to low-dose Velcade, etc? Were there ever any maintenance studies that pitted one against the other?
I honestly don't know how I would choose a maintenance period based on all the differing opinions from top specialists out there.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: NEJM article on transplantation & Revlimid maintenance
Multibilly,
Thanks for your opinion; I think you see the big picture as well as anybody. I'm just further down this bumpy road than you are. And I understand that there are a lot of gray areas.
I chose not to do the transplant (against my myeloma specialist's recommendation). I have many lytic lesions in my spine but, if not for the scans, I wouldn't 't know they were there. I was initially diagnosed with 0.9 g/dL M-spike and 30 percent plasma cells on biopsy. Diagnosis was IgG kappa myeloma.
VRD [Velcade, Revlimid, dexamethasone] quickly got it to 0.4 g/dL M-spike. Stopped the Velcade and dex and kept lowering the dose of Revlimid to 2.5 mg. M-spike continued to drop to 0.12 and 0.2, where it has remained for a year and a half.
My side effects from the Revlimid are more than annoying, but tolerable. I'm pretty sure that there are no studies of that low of dose of Revlimid, but it does seem to be working for me (or would I be in partial remission without taking it?). I'd like to take a holiday, but I hate to rock the boat.
Thanks again Multibilly; I really respect your opinion.
Coach Hoke
Thanks for your opinion; I think you see the big picture as well as anybody. I'm just further down this bumpy road than you are. And I understand that there are a lot of gray areas.
I chose not to do the transplant (against my myeloma specialist's recommendation). I have many lytic lesions in my spine but, if not for the scans, I wouldn't 't know they were there. I was initially diagnosed with 0.9 g/dL M-spike and 30 percent plasma cells on biopsy. Diagnosis was IgG kappa myeloma.
VRD [Velcade, Revlimid, dexamethasone] quickly got it to 0.4 g/dL M-spike. Stopped the Velcade and dex and kept lowering the dose of Revlimid to 2.5 mg. M-spike continued to drop to 0.12 and 0.2, where it has remained for a year and a half.
My side effects from the Revlimid are more than annoying, but tolerable. I'm pretty sure that there are no studies of that low of dose of Revlimid, but it does seem to be working for me (or would I be in partial remission without taking it?). I'd like to take a holiday, but I hate to rock the boat.
Thanks again Multibilly; I really respect your opinion.
Coach Hoke
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coachhoke - Name: coachhoke
- When were you/they diagnosed?: Apri 2012
- Age at diagnosis: 71
Re: NEJM article on transplantation & Revlimid maintenance
Coach Hoke,
As I recall, you are on 5 mg Revlimid maintenance. Why wouldn't you dial it back to 2.5 mg if the side effects are "more than annoying"?
As I recall, you are on 5 mg Revlimid maintenance. Why wouldn't you dial it back to 2.5 mg if the side effects are "more than annoying"?
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
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