I've been on thalidomide (started with 100 mg, now I'm on 50 mg) for 2 years now. My doctor is suggesting that I stop (I'm on complete remission). I'm not sure if I really should.
Anyone out there with similar experience?
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Re: Length of thalidomide maintenance therapy
Hello TBR:
Your question was short and clear, however, it touches on one of the significantly unsettled questions, with significant disagreement amongst the experts. Let me give you my read of the some of the latest literature.
The recent CalGB study update results compared no Revlimid maintenance to continuous maintenance. PFS advantage has long been established, however, only in the recent update, did there appear a statistically significant advantage to OS for Revlimid continuous maintenance (it took about 7 years or so for the data to become ripe).
I'll assume that at the maintenance level dosages, that thalidomide and Revlimid have similar activity. Your situation and question, is a little different, stopping maintenance after two years. That actually is an approach that many doctors still advocate. I recall Dr. Palumbo from Italy stating that his studies did show about a 1 to 1 1/2 year PFS advantage to the two year duration of maintenance (versus no maintenance). The CalGB study showed a better PFS advantage to continuous maintenance of about 27 months.
So my non-medical guess (lets call it a WAG) is that you could be leaving about a year of PFS on the table when stopping maintenance after two years IF YOU ARE THE AVERAGE PATIENT. Keep in mind that you have no way of knowing ahead of time if you are average, above it, or below it, except if you know you are standard risk, then you could hopefully assume that you would at least get the average result.
Accepting the possibility of reduced PFS if stopping maintenance, there are counter arguments. If you are in good health and active, your body may realize some benefit to the medication holiday, which may put you in better shape to do better whenever it turns out you need another induction therapy (hopefully a long, long time). So your doctor is an experienced medical professional, and I am not, however, I think its safe to say that there are other doctors out there that would proscribe to the continuous maintenance approach. Since you are interested in continuing treatment and staying in CR (I assume you are tolerating the maintenance well), I will give you one thing to think about. You could potentially look for clinical trials for maintenance with some of the new immunotherapies. If you find the right situation with one of the new monoclonal antibodies or other immunotherapies, you might do better (longer PFS) and get less side effects. Good luck to you.
Your question was short and clear, however, it touches on one of the significantly unsettled questions, with significant disagreement amongst the experts. Let me give you my read of the some of the latest literature.
The recent CalGB study update results compared no Revlimid maintenance to continuous maintenance. PFS advantage has long been established, however, only in the recent update, did there appear a statistically significant advantage to OS for Revlimid continuous maintenance (it took about 7 years or so for the data to become ripe).
I'll assume that at the maintenance level dosages, that thalidomide and Revlimid have similar activity. Your situation and question, is a little different, stopping maintenance after two years. That actually is an approach that many doctors still advocate. I recall Dr. Palumbo from Italy stating that his studies did show about a 1 to 1 1/2 year PFS advantage to the two year duration of maintenance (versus no maintenance). The CalGB study showed a better PFS advantage to continuous maintenance of about 27 months.
So my non-medical guess (lets call it a WAG) is that you could be leaving about a year of PFS on the table when stopping maintenance after two years IF YOU ARE THE AVERAGE PATIENT. Keep in mind that you have no way of knowing ahead of time if you are average, above it, or below it, except if you know you are standard risk, then you could hopefully assume that you would at least get the average result.
Accepting the possibility of reduced PFS if stopping maintenance, there are counter arguments. If you are in good health and active, your body may realize some benefit to the medication holiday, which may put you in better shape to do better whenever it turns out you need another induction therapy (hopefully a long, long time). So your doctor is an experienced medical professional, and I am not, however, I think its safe to say that there are other doctors out there that would proscribe to the continuous maintenance approach. Since you are interested in continuing treatment and staying in CR (I assume you are tolerating the maintenance well), I will give you one thing to think about. You could potentially look for clinical trials for maintenance with some of the new immunotherapies. If you find the right situation with one of the new monoclonal antibodies or other immunotherapies, you might do better (longer PFS) and get less side effects. Good luck to you.
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JPC - Name: JPC
Re: Length of thalidomide maintanance therapy
Thanks JPC. Much appreciated! And yes, thankfully I do tolerate the maintenance therapy.
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