A lot of the questions here in the forum concern maintenance therapy. In the past, the question often has been: Should I go on maintenance therapy? More often today, the question is: How long should I go on maintenance therapy?
Since this is a frequent topic here in the forum, we thought we'd share a link to a summary of a debate that took place this spring between two myeloma specialists: Dr. Suzanne Lentzsch and Dr. Ruben Niesvizky.
"Point-Counterpoint: What is the Best Duration of Maintenance Therapy for Newly Diagnosed Multiple Myeloma Patients Who Have Completed Induction, ASCT, and Consolidation Therapy?", Oncology Times, July 17, 2015 (link to article)
Lentzsch's position: "Maintenance exposes all patients to the side effects of prolonged treatment, and this could lead to an explosion of costs without proven benefit for survival. Maintenance therapy should be given for only two years, since common wisdom dictates that PFS by itself may not justify continuous therapy for all patients. Either a survival or quality-of-life benefit needs to be shown to justify toxicities, costs, and potential overtreatment,”
Niesvizky's position: “Patients who receive maintenance have improved PFS and OS. In Europe, the recommendation is continued maintenance with lenalidomide or bortezomib for multiple myeloma patients.”
What are your thoughts on the debate?
Forums
Re: Lentzsch & Niesvizky debate maintenance therapy
Boris:
Your "wind-up" had all the energy & trappings of a "Dempsey v Schmelling" title fight!
I like Black Jack Dempsey....in this one ( Continuous maintenance).
Have a good weekend.
Your "wind-up" had all the energy & trappings of a "Dempsey v Schmelling" title fight!
I like Black Jack Dempsey....in this one ( Continuous maintenance).
Have a good weekend.
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Rneb
Re: Lentzsch & Niesvizky debate maintenance therapy
I thought that Dr. Lentzsch did a much better job of going into the data behind why she concludes what she does. Although I like a lot of the work Dr. Niesvizky has done, I think he really glosses over a lot of issues in his side of the debate.
Lentzsch correctly points out that the data are clear about maintenance therapy providing greater progression-free survival. In layman's speak, that means you'll relapse later if you go on maintenance therapy.
But she also makes clear another point that so many people -- patients and docs alike -- gloss over. Of the many major head-to-head trials that have looked at this issue, only one has shown that maintenance provides an overall survival benefit. So, yeah, maintenance will keep you in remission longer, but your subsequent remissions will be shorter, so there won't be any change in your overall survival.
And then Lentzsch highlights what so many people (hello drug companies) want to sweep under the rug: While you're on maintenance therapy, you'll very often be fatigued, experience GI side effects, possibly see your marrow function decline, experience an increased risk of secondary cancers (with Revlimid maintenance), etc. Not to mention the cost of copayments, doctors visits, etc.
What I don't understand, honestly, is why the debate is about how long maintenance therapy should be. To me, it seems like it still should be about whether or not all patients should go on to maintenance therapy. (And, honestly, if you look at Lentzsch's arguments, you can really see that they argue against blindly prescribing maintenance therapy for all myeloma patients.)
Lentzsch correctly points out that the data are clear about maintenance therapy providing greater progression-free survival. In layman's speak, that means you'll relapse later if you go on maintenance therapy.
But she also makes clear another point that so many people -- patients and docs alike -- gloss over. Of the many major head-to-head trials that have looked at this issue, only one has shown that maintenance provides an overall survival benefit. So, yeah, maintenance will keep you in remission longer, but your subsequent remissions will be shorter, so there won't be any change in your overall survival.
And then Lentzsch highlights what so many people (hello drug companies) want to sweep under the rug: While you're on maintenance therapy, you'll very often be fatigued, experience GI side effects, possibly see your marrow function decline, experience an increased risk of secondary cancers (with Revlimid maintenance), etc. Not to mention the cost of copayments, doctors visits, etc.
What I don't understand, honestly, is why the debate is about how long maintenance therapy should be. To me, it seems like it still should be about whether or not all patients should go on to maintenance therapy. (And, honestly, if you look at Lentzsch's arguments, you can really see that they argue against blindly prescribing maintenance therapy for all myeloma patients.)
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JimNY
Re: Lentzsch & Niesvizky debate maintenance therapy
I took Revlimid maintenance for two years, and my myeloma seemed to remain in good partial remission (0.2 M-spike, no other numbers out of range, and no symptoms). I chose to take a "drug holiday" until disease progression (relapse). Upon relapse I'll start on the Revlimid again. What is wrong with this logic? I've been on the holiday for seven months now.
Coach Hoke
Coach Hoke
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coachhoke - Name: coachhoke
- When were you/they diagnosed?: Apri 2012
- Age at diagnosis: 71
Re: Lentzsch & Niesvizky debate maintenance therapy
Coach, that's exactly what I'm doing also. Off Revlimid for 5 months now. Due for next blood test in August. Seems we live from one blood test to the next.
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JBarnes - Name: Jerry Barnes
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: Aug 17, 2012
- Age at diagnosis: 54
Re: Lentzsch & Niesvizky debate maintenance therapy
Like many other aspects to my treatment, my experience was shaped by the Canadian health care system. At the time I went off of chemotherapy (low dose Revlimid) in 2011, 'maintenance therapy' as such was not yet approved as a treatment here. Now, maintenance therapy IS approved, so that gives patients a choice.
When I went off of chemo, I had been in a CR for a few cycles. My doctor and I didn't see any reason to continue with the Revlimid, especially since there had been some data presented at a major conference implicating it with an increased risk of secondary cancers. So, like many others here or in other countries, I didn't take any chemo for awhile – 3 1/2 years.
To me, being off chemo was a blessing, but I was not at that time struggling with the myeloma counts creeping up or anything like that. So I think it is a very individual decision between doctors and patients, as to whether or not to take 'maintenance'.
When I went off of chemo, I had been in a CR for a few cycles. My doctor and I didn't see any reason to continue with the Revlimid, especially since there had been some data presented at a major conference implicating it with an increased risk of secondary cancers. So, like many others here or in other countries, I didn't take any chemo for awhile – 3 1/2 years.
To me, being off chemo was a blessing, but I was not at that time struggling with the myeloma counts creeping up or anything like that. So I think it is a very individual decision between doctors and patients, as to whether or not to take 'maintenance'.
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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: Lentzsch & Niesvizky debate maintenance therapy
Coach Hoke wrote:
I'm on a little different path than you, coach, but I too wanted to get the break from treatment. I was too sick to get an ASCT upfront, so my doctor decided to start me on VRD regimen, which I stayed on for two years. Got to a very good partial response (VGPR) and, at that time, I decided to stop treatment and take the wait and see approach. It has been 10 months since.
Just a little update, though. I just had a full skeletal xray done on me, and I have two small lesions on my right arm and leg not previously mentioned on other tests. So I go for a bone aspirate of one to see if it's active or not.
No matter what the test brings, I'm still glad I took the break from the drugs and I'm hoping for more drug-free time.
I took Revlimid maintenance for two years, and my myeloma seemed to remain in good partial remission (0.2 M-spike, no other numbers out of range, and no symptoms). I chose to take a "drug holiday" until disease progression (relapse). Upon relapse I'll start on the Revlimid again. What is wrong with this logic? I've been on the holiday for seven months now.
I'm on a little different path than you, coach, but I too wanted to get the break from treatment. I was too sick to get an ASCT upfront, so my doctor decided to start me on VRD regimen, which I stayed on for two years. Got to a very good partial response (VGPR) and, at that time, I decided to stop treatment and take the wait and see approach. It has been 10 months since.
Just a little update, though. I just had a full skeletal xray done on me, and I have two small lesions on my right arm and leg not previously mentioned on other tests. So I go for a bone aspirate of one to see if it's active or not.
No matter what the test brings, I'm still glad I took the break from the drugs and I'm hoping for more drug-free time.
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gmarv - Name: marvin
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: aug.2012
- Age at diagnosis: 57
Re: Lentzsch & Niesvizky debate maintenance therapy
Thanks, Beacon Staff, for the link to the debate. As you (and others) have said, the question of whether / how long to do maintenance therapy is something that many of us are facing.
From a patient perspective, it's not an easy question because there are highly respected researchers/doctors on both sides of the debate. So reading what these two researchers said was useful. I found it particularly interesting that Lentzch and Niesvizky are from the same hospital.
As I've mentioned elsewhere in the Forum, I'll be facing the "how long" question in October, as my two-year Revlimid maintenance period comes to an end. My doctor has recommended that I continue Revlimid maintenance indefinitely after Oct. So I am actively collecting as much data (reading studies) and as many opinions as I can before making a decision.
Mike
From a patient perspective, it's not an easy question because there are highly respected researchers/doctors on both sides of the debate. So reading what these two researchers said was useful. I found it particularly interesting that Lentzch and Niesvizky are from the same hospital.
As I've mentioned elsewhere in the Forum, I'll be facing the "how long" question in October, as my two-year Revlimid maintenance period comes to an end. My doctor has recommended that I continue Revlimid maintenance indefinitely after Oct. So I am actively collecting as much data (reading studies) and as many opinions as I can before making a decision.
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: Lentzsch & Niesvizky debate maintenance therapy
I appreciate this article! Thank you, Beacon staff.
Revlimid seems to suppress all my blood cells, the good ones as well as the multiple myeloma.
So, my WBC count has only been in normal range (above 4) one time in the almost 3 years since my ASCT. My MCV (mean corpuscle volume) - the shape of my blood cells – is always off, as is the color of my RBC (reflected in MCH).
My absolute neutrophil count has only been above 2000 one time since my ASCT.
That is why I started to try to cut back on the amount of Revlimid a year ago and finally asked if I could discontinue it completely.
Cathy.
Revlimid seems to suppress all my blood cells, the good ones as well as the multiple myeloma.
So, my WBC count has only been in normal range (above 4) one time in the almost 3 years since my ASCT. My MCV (mean corpuscle volume) - the shape of my blood cells – is always off, as is the color of my RBC (reflected in MCH).
My absolute neutrophil count has only been above 2000 one time since my ASCT.
That is why I started to try to cut back on the amount of Revlimid a year ago and finally asked if I could discontinue it completely.
Cathy.
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antelope1225 - Name: Cathy1225
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: May 25 2012
- Age at diagnosis: 55
Re: Lentzsch & Niesvizky debate maintenance therapy
I found the following video interesting on an ongoing study discussing lenalidomide maintenance vs placebo for multiple myeloma patients following a single ASCT.
https://www.youtube.com/watch?v=AVRJ8BSUFOU
To me it sounds like if you can tolerate the lenalidomide and are willing to deal with the small increased chance of secondary cancers, you're better off staying on continuous maintenance with lenalidomide compared to taking nothing.
I'm currently on maintenance with lenalidomide and have been on it for about 14 months post transplant so this is good information for me to use in determining whether to continue maintenance in the future.
https://www.youtube.com/watch?v=AVRJ8BSUFOU
To me it sounds like if you can tolerate the lenalidomide and are willing to deal with the small increased chance of secondary cancers, you're better off staying on continuous maintenance with lenalidomide compared to taking nothing.
I'm currently on maintenance with lenalidomide and have been on it for about 14 months post transplant so this is good information for me to use in determining whether to continue maintenance in the future.
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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
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