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Re: Maintenance treatment post-transplant?
Congratulations Mike - what an awesome feat. Thanks for sharing and inspiring us!
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PattyB - Name: PattyB
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: July 2014
- Age at diagnosis: 64
Re: Maintenance treatment post-transplant?
Thanks for sharing about your hike, as well as the lovely photo of your family and the view from the mountain top!
My family (7 of us) went on a much shorter hike to Ptarmigan Cirque, in Kananaskis Country, Alberta, in July, into some alpine meadows. The elevation in the mountain meadows was 8000 feet (2440 metres), but the round trip was only 5 km (3 miles), with an elevation gain of 230 m.
The hike starts from the summit of Highwood Pass highway, which is the highest paved road in Canada. Even little 3 year olds were on this hike, but I was huffing a lot on the first 2 km. I think that taking the Revlimid has slowed me down a bit! We saw a glacier, mountain sheep, little waterfalls and the wildflowers were at their best. We also saw where a grizzly had been digging for roots, and some bear scat.
It was a great hike!
My family (7 of us) went on a much shorter hike to Ptarmigan Cirque, in Kananaskis Country, Alberta, in July, into some alpine meadows. The elevation in the mountain meadows was 8000 feet (2440 metres), but the round trip was only 5 km (3 miles), with an elevation gain of 230 m.
The hike starts from the summit of Highwood Pass highway, which is the highest paved road in Canada. Even little 3 year olds were on this hike, but I was huffing a lot on the first 2 km. I think that taking the Revlimid has slowed me down a bit! We saw a glacier, mountain sheep, little waterfalls and the wildflowers were at their best. We also saw where a grizzly had been digging for roots, and some bear scat.
It was a great hike!
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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: Maintenance treatment post-transplant?
Hi Again!
I'm back home now and all recovered from the Half Dome hike.
Thanks so much for the congratulations! Hiking up Half Dome is something I've wanted to do for many years, and I'm very happy that I was able to do it. Especially with my daughter Kim and my niece Missy. I've been looking ahead to this hike for so long that it's a little hard for me to comprehend that it's behind me now. I need to figure out what to do next.
Jonah - I like your idea of a 2025 repeat hike! I'm not sure Kim would agree though.
Nancy - thanks for sharing about the hike you and your family did. That sounds like a great hike too. 8000 feet is pretty high - I think Half Dome is only a little higher than that. I'm sorry that you had some trouble with breathing. Probably a combination of the elevation and the Revlimid. But you made it! That's the most important thing!
Mike
I'm back home now and all recovered from the Half Dome hike.
Thanks so much for the congratulations! Hiking up Half Dome is something I've wanted to do for many years, and I'm very happy that I was able to do it. Especially with my daughter Kim and my niece Missy. I've been looking ahead to this hike for so long that it's a little hard for me to comprehend that it's behind me now. I need to figure out what to do next.
Jonah - I like your idea of a 2025 repeat hike! I'm not sure Kim would agree though.
Nancy - thanks for sharing about the hike you and your family did. That sounds like a great hike too. 8000 feet is pretty high - I think Half Dome is only a little higher than that. I'm sorry that you had some trouble with breathing. Probably a combination of the elevation and the Revlimid. But you made it! That's the most important thing!
Mike
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mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
Re: Maintenance treatment post-transplant?
Hi again,
Time for another update...
In retrospect, I should have started a new thread instead of telling my maintenance vs. no maintenance story within this more general thread. If I had known back when I first replied to this thread that I'd have so many twists and turns on the road, I would have done that. And called the thread "As the Revlimid Revolves..." (some of you may recall the old US soap opera "As the World Turns.")
In our last episode of this show, my doctors had stopped Revlimid maintenance for me because it seemed Revlimid was slowing my heart rate ("bradycardia") and sometimes causing me to faint or nearly faint. In addition, my cardiologist and cardiac electrophysiologist had detected atrial fibrillation, where my heart spontaneously began to beat too fast.
The doctors have been continuing to monitor my heart by having me wear the heart event monitor most of the time since late July. In late August they started me on the beta blocker, Metoprolol, to deal with the a-fib. Shortly after that, though, they changed course and decided that my a-fib was not bad enough to require medication. In the week or so before starting Metoprolol, I was only having about one a-fib event per day, which typically lasted only a matter of seconds before I spontaneously returned to my normal heart rate ("sinus rhythm"). So that was good news - one less drug to deal with. Since stopping Metoprolol, I've continued to have the same low frequency of a-fib events.
In a late August visit to my oncologist, he told me that at that point I had gone so long without taking Revlimid (around a month) that I had passed the time limit that knocked me out of the clinical trial I had been in. That was a disappointment. But I also received the more important good news that my end-of-August BMB showed me to continue to be MRD negative.
Then, after more monitoring and a stress test, my cardiac doctors and my oncologist decided it would be ok for me to restart taking Revlimid at a lower dose - 5 mg daily for 21 days, then off for 7 days, compared to the 10 mg everyday I had been on before. Not only would it be "ok" to try, but my oncologist definitely recommended it. And, surprisingly, after my oncologist consulted with the doctor leading the clinical trial at my myeloma center, they said I could continue to be in the clinical trial after all. But this would mean taking the Revlimid continuously (if I could tolerate it), as opposed to taking it for just 24 months of maintenance, which would have been only about 3 more cycles.
So at this point, the ball was back in my court. I faced the decision I'd thought a lot about theoretically, but which I thought had been taken out of my hands in early August when the Revlimid was stopped. Should I continue Revlimid maintenance indefinitely?
I decided to restart the Revlimid and see how things go. I had my first dose Friday night. I'm still wearing the heart event monitor so they will be able to pick up any irregularities that might occur.
I'm far from certain that this is the "right" choice, but my decision scale is tilted slightly in the direction of continuing maintenance. Revlimid has been great at keeping my myeloma beaten down for the past couple of years. Other than the bradycardia, the side effects I've experienced with Revlimid have not been too serious. So let's keep the pressure on the myeloma while we can.
I'll keep you posted on how things go.
Mike
Time for another update...
In retrospect, I should have started a new thread instead of telling my maintenance vs. no maintenance story within this more general thread. If I had known back when I first replied to this thread that I'd have so many twists and turns on the road, I would have done that. And called the thread "As the Revlimid Revolves..." (some of you may recall the old US soap opera "As the World Turns.")
In our last episode of this show, my doctors had stopped Revlimid maintenance for me because it seemed Revlimid was slowing my heart rate ("bradycardia") and sometimes causing me to faint or nearly faint. In addition, my cardiologist and cardiac electrophysiologist had detected atrial fibrillation, where my heart spontaneously began to beat too fast.
The doctors have been continuing to monitor my heart by having me wear the heart event monitor most of the time since late July. In late August they started me on the beta blocker, Metoprolol, to deal with the a-fib. Shortly after that, though, they changed course and decided that my a-fib was not bad enough to require medication. In the week or so before starting Metoprolol, I was only having about one a-fib event per day, which typically lasted only a matter of seconds before I spontaneously returned to my normal heart rate ("sinus rhythm"). So that was good news - one less drug to deal with. Since stopping Metoprolol, I've continued to have the same low frequency of a-fib events.
In a late August visit to my oncologist, he told me that at that point I had gone so long without taking Revlimid (around a month) that I had passed the time limit that knocked me out of the clinical trial I had been in. That was a disappointment. But I also received the more important good news that my end-of-August BMB showed me to continue to be MRD negative.
Then, after more monitoring and a stress test, my cardiac doctors and my oncologist decided it would be ok for me to restart taking Revlimid at a lower dose - 5 mg daily for 21 days, then off for 7 days, compared to the 10 mg everyday I had been on before. Not only would it be "ok" to try, but my oncologist definitely recommended it. And, surprisingly, after my oncologist consulted with the doctor leading the clinical trial at my myeloma center, they said I could continue to be in the clinical trial after all. But this would mean taking the Revlimid continuously (if I could tolerate it), as opposed to taking it for just 24 months of maintenance, which would have been only about 3 more cycles.
So at this point, the ball was back in my court. I faced the decision I'd thought a lot about theoretically, but which I thought had been taken out of my hands in early August when the Revlimid was stopped. Should I continue Revlimid maintenance indefinitely?
I decided to restart the Revlimid and see how things go. I had my first dose Friday night. I'm still wearing the heart event monitor so they will be able to pick up any irregularities that might occur.
I'm far from certain that this is the "right" choice, but my decision scale is tilted slightly in the direction of continuing maintenance. Revlimid has been great at keeping my myeloma beaten down for the past couple of years. Other than the bradycardia, the side effects I've experienced with Revlimid have not been too serious. So let's keep the pressure on the myeloma while we can.
I'll keep you posted on how things go.
Mike
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mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
Re: Maintenance treatment post-transplant?
Hello MikeB:
Thank you for the update on maintenance. I would like to ask a question, and forgive me in advance if its too detailed or fine a question, and answer only if you are comfortable to do so.
Was your Revlimid maintenance trial the CALGB trial that they just updated? Or was it another Revlimid maintenance trial?
I am asking because the CALGB has only just now reached the stage (about ten years after it was opened) to start reporting overall survival data. At first look, the data seems to be very positive on the Revlimid maintenance side. I am wondering if you are on that trial, or if there is another trial that is looking at the same or similar question.
Thank you for your many very informative (and very positive) posts and reports. Regards,
Thank you for the update on maintenance. I would like to ask a question, and forgive me in advance if its too detailed or fine a question, and answer only if you are comfortable to do so.
Was your Revlimid maintenance trial the CALGB trial that they just updated? Or was it another Revlimid maintenance trial?
I am asking because the CALGB has only just now reached the stage (about ten years after it was opened) to start reporting overall survival data. At first look, the data seems to be very positive on the Revlimid maintenance side. I am wondering if you are on that trial, or if there is another trial that is looking at the same or similar question.
Thank you for your many very informative (and very positive) posts and reports. Regards,
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JPC - Name: JPC
Re: Maintenance treatment post-transplant?
Thanks for the detailed update about your maintenance therapy, Mike. I hope the lower dose works out well for you and you don't have any further side effects.
JPC - Progression-free survival (PFS) and overall survival (OS) results from the CALGB trial have been available for close to 4 years. They were published in the New England Journal of Medicine, along with similar results for the other two key Revlimid maintenance trials, in May, 2012. But results of all three trials were released at the ASH meeting the previous December. Here's an article with details about the three studies:
"Revlimid Maintenance Therapy: Three Major Studies Clarify The Benefits And Risks," The Myeloma Beacon, May 11, 2012
As has been mentioned here in the forum before, these three trials are generally considered the best tests of the impact of Revlimid maintenance therapy on survival. Of the three trials, only the CALGB trial has demonstrated an overall survival benefit; the other two trials show the expected PFS benefit, but no OS benefit.
While the CALGB results were recently updated, there have not been any updates from the other two trials, at least that I am aware of. There was an update from the French (IFM) Revlimid maintenance trial at the 2013 ASH meeting, as described in this article:
"ASH 2013 Multiple Myeloma Update - Day Three: Morning Oral Sessions," The Myeloma Beacon, Dec 13, 2013
JPC - Progression-free survival (PFS) and overall survival (OS) results from the CALGB trial have been available for close to 4 years. They were published in the New England Journal of Medicine, along with similar results for the other two key Revlimid maintenance trials, in May, 2012. But results of all three trials were released at the ASH meeting the previous December. Here's an article with details about the three studies:
"Revlimid Maintenance Therapy: Three Major Studies Clarify The Benefits And Risks," The Myeloma Beacon, May 11, 2012
As has been mentioned here in the forum before, these three trials are generally considered the best tests of the impact of Revlimid maintenance therapy on survival. Of the three trials, only the CALGB trial has demonstrated an overall survival benefit; the other two trials show the expected PFS benefit, but no OS benefit.
While the CALGB results were recently updated, there have not been any updates from the other two trials, at least that I am aware of. There was an update from the French (IFM) Revlimid maintenance trial at the 2013 ASH meeting, as described in this article:
"ASH 2013 Multiple Myeloma Update - Day Three: Morning Oral Sessions," The Myeloma Beacon, Dec 13, 2013
Re: Maintenance treatment post-transplant?
Hi MikeB,
Other than the shooting, how was the theatre, Mrs. Lincoln?!
Congrats on being MRD negative. Just out of curiosity, do you have to continue doing bone marrow biopsies for the clinical trial? What does you doctor tell you the purpose of the MRD testing is for you? It sounds like he would recommend never ending maintenance therapy for a patient if they are MRD negative or positive, so is this just for research purposes to see if patients who are MRD positive relapse quicker than those that are MRD negative? I did a lot of bone marrow biopsies / MRD testing, but when I tested MRD negative, I got to go on a therapy break.
Mark
Other than the bradycardia, the side effects I've experienced with Revlimid have not been too serious.
Other than the shooting, how was the theatre, Mrs. Lincoln?!
Congrats on being MRD negative. Just out of curiosity, do you have to continue doing bone marrow biopsies for the clinical trial? What does you doctor tell you the purpose of the MRD testing is for you? It sounds like he would recommend never ending maintenance therapy for a patient if they are MRD negative or positive, so is this just for research purposes to see if patients who are MRD positive relapse quicker than those that are MRD negative? I did a lot of bone marrow biopsies / MRD testing, but when I tested MRD negative, I got to go on a therapy break.
Mark
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Mark11
Re: Maintenance treatment post-transplant?
Hello Cheryl G:
Thank you for your post. I had read earlier data on the CALGB trial (I am not sure that I got the gist of everything, but I am trying to focus on OS data). I understood that this trial could not make any informed conclusions on OS based on the prior data based on available data on earlier reports.
OS data on clinical trials is a very difficult issue to document. I did notice that the "status" of OS from the CALGB trial actually changed just this year (I believe it's on the updated clinical trial presented at this year's ASCO).
The change in status, if I understand correctly, is as follows. Prior to this year, there was not enough data to favor a benefit to maintenance. I think that this year's data did in fact "prove" (within the parameters of this trial) that maintenance was VERY beneficial with respect to OS.
It is an issue that I am interested and I will look into some more the two other trials that you cite.
Thank you, Best Regards, and good luck, JPC
Thank you for your post. I had read earlier data on the CALGB trial (I am not sure that I got the gist of everything, but I am trying to focus on OS data). I understood that this trial could not make any informed conclusions on OS based on the prior data based on available data on earlier reports.
OS data on clinical trials is a very difficult issue to document. I did notice that the "status" of OS from the CALGB trial actually changed just this year (I believe it's on the updated clinical trial presented at this year's ASCO).
The change in status, if I understand correctly, is as follows. Prior to this year, there was not enough data to favor a benefit to maintenance. I think that this year's data did in fact "prove" (within the parameters of this trial) that maintenance was VERY beneficial with respect to OS.
It is an issue that I am interested and I will look into some more the two other trials that you cite.
Thank you, Best Regards, and good luck, JPC
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JPC - Name: JPC
Re: Maintenance treatment post-transplant?
Hi all,
JPC,
In answer to your question - I am not on the CALGB trial. I am on the DFCI 10-106 trial. Randomized Trial of Lenalidomide, Bortezomib, Dexamethasone vs High-Dose Treatment With SCT in multiple myeloma Patients up to Age 65 (link to trial info at clinicaltrials.gov). I think I saw an acronym for it awhile back, but I've forgotten it.
I was randomized into the SCT arm and had my transplant in May, 2013.
When I started the trial (and my initial treatment) in January 2013, the Revlimid maintenance period was "only" 24 months. Sometime since then, the parameters of the trial changed so that the maintenance period is "until disease progression." I am now following that longer maintenance protocol, although, of course, I or my doctor can (again) stop the Revlimid maintenance at any time.
Mark,
Ha! When I wrote my update post, I was thinking of adding that same Mrs. Lincoln reference, but didn't. Great minds think alike.
In answer to your questions, I think the trial protocol calls for a bone marrow biopsy (BMB) at least yearly. And I do think the purpose of the one in August was simply to check whether I am still MRD negative, as I had been in the previous BMB last year. Happily, I am!
After my MRD negative BMB last year, my doctor told me, "We have to assume that there is still myeloma in you, even though we can't detect it with the (flow cytometry) test." So that's why he wanted to continue Revlimid maintenance then. Plus the clinical trial protocol called for 24 months of maintenance, and I was only at about 9 or 10 months then.
And, more recently, my doctor recommended continuous Revlimid maintenance for me, back in June, well before we did the most recent BMB and before my heart issues became concerning. He mentioned to me that Memorial Sloan Kettering, where I get treated, has started recommending continuous Revlimid maintenance for many patients who have cases similar to mine and who have done well on their previous treatments. I'm not sure it is the standard of care there now, but maybe getting close.
Cheryl,
Thanks for the references to the Beacon article and to the ASH article. Whether to do continuous maintenance or not is a very hot topic now.
My doctor and I talked at some length about the pros and cons of continuous maintenance, in general and specifically in my case. My impression is that he (and others at MSK) were impressed by the recent CALGB updated results. Despite the patient crossover in the study that complicates the data analysis, he said it is hard to argue with the longer OS result for continuous maintenance.
Like you and JPC, and many others I'm sure, I will be closely following news from any studies looking at Revlimid maintenance.
And just one more random thought – it's amazing to me how quickly things change in multiple myeloma treatment. When I started my treatment less than three years ago, I never expected that I'd be doing long-term Revlimid maintenance. And I sure didn't expect to ever be MRD negative (didn't even know what it was), especially when my M-spike was 0.4 g/dL (4 g/l) after my SCT. I've been very fortunate!
Mike
JPC,
In answer to your question - I am not on the CALGB trial. I am on the DFCI 10-106 trial. Randomized Trial of Lenalidomide, Bortezomib, Dexamethasone vs High-Dose Treatment With SCT in multiple myeloma Patients up to Age 65 (link to trial info at clinicaltrials.gov). I think I saw an acronym for it awhile back, but I've forgotten it.
I was randomized into the SCT arm and had my transplant in May, 2013.
When I started the trial (and my initial treatment) in January 2013, the Revlimid maintenance period was "only" 24 months. Sometime since then, the parameters of the trial changed so that the maintenance period is "until disease progression." I am now following that longer maintenance protocol, although, of course, I or my doctor can (again) stop the Revlimid maintenance at any time.
Mark,
Ha! When I wrote my update post, I was thinking of adding that same Mrs. Lincoln reference, but didn't. Great minds think alike.
In answer to your questions, I think the trial protocol calls for a bone marrow biopsy (BMB) at least yearly. And I do think the purpose of the one in August was simply to check whether I am still MRD negative, as I had been in the previous BMB last year. Happily, I am!
After my MRD negative BMB last year, my doctor told me, "We have to assume that there is still myeloma in you, even though we can't detect it with the (flow cytometry) test." So that's why he wanted to continue Revlimid maintenance then. Plus the clinical trial protocol called for 24 months of maintenance, and I was only at about 9 or 10 months then.
And, more recently, my doctor recommended continuous Revlimid maintenance for me, back in June, well before we did the most recent BMB and before my heart issues became concerning. He mentioned to me that Memorial Sloan Kettering, where I get treated, has started recommending continuous Revlimid maintenance for many patients who have cases similar to mine and who have done well on their previous treatments. I'm not sure it is the standard of care there now, but maybe getting close.
Cheryl,
Thanks for the references to the Beacon article and to the ASH article. Whether to do continuous maintenance or not is a very hot topic now.
My doctor and I talked at some length about the pros and cons of continuous maintenance, in general and specifically in my case. My impression is that he (and others at MSK) were impressed by the recent CALGB updated results. Despite the patient crossover in the study that complicates the data analysis, he said it is hard to argue with the longer OS result for continuous maintenance.
Like you and JPC, and many others I'm sure, I will be closely following news from any studies looking at Revlimid maintenance.
And just one more random thought – it's amazing to me how quickly things change in multiple myeloma treatment. When I started my treatment less than three years ago, I never expected that I'd be doing long-term Revlimid maintenance. And I sure didn't expect to ever be MRD negative (didn't even know what it was), especially when my M-spike was 0.4 g/dL (4 g/l) after my SCT. I've been very fortunate!
Mike
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mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
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