by JPC on Wed Sep 07, 2016 7:47 am
Hello MMFeb15, 16:
I noticed that your original question was on maintenance, however, somewhere along the way, the discussion morphed into when to begin treatment at relapse. I wanted to chime in to clarify the difference between relapse treatment and maintenance treatment.
The criteria for relapse has been updated by the IMWG. Imaging has been added as an earlier predictor that the multiple myeloma is on the move, and to get it addressed before bad effects kick in. Also, there is the issue of non-symptomatic (aka serologic) relapse, based only on the M-spike rising (without symptoms), and despite a reference on that from the IMWG, some centers, at least recently, I have observed, follow different criteria. I have seen an increase in the M-spike of 1, I have seen an increase of 0.5, and I have also seen 10% increase as a definition of relapse. Light chain only relapse is a bit more complicated. Although there are differences in when doctors consider exactly relapse has occurred, I think its obvious that treatment is required at that point.
Maintenance treatment, however, has nothing to do with relapse criteria. It is pre-planned treatment at a lower level than induction, given to a patient in a good first remission, who typically have achieved a VGPR or better. It is typically Revlimid at the maintenance level of 10 mg, but in theory could be a number of other drugs or combinations. The idea is to find a maintenance that works for each patient, but is well tolerated. As a practical matter, Revlimid has been tried and tested, as it's an oral drug. Last year a study published at the EMA showed in a small group that sub CT Velcade maintenance may have a similar activity. This has led to speculation that oral Ninlaro (ixazomib) may be a good maintenance agent, and its under study for approval for maintenance at this time.
When my wife turned symptomatic late in the summer of 2014, we spoke to the 4 most prominent centers in New York City. At that time, each of their philosophies included maintenance after induction. Interestingly, two centers said the autologous stem cell transplant would be optional if a complete response (CR) was achieved during induction, the other two would definitely recommend a stem cell transplant. With respect to maintenance, however, all four of them said it should be included. The difference in that regard was that one definitely wanted to maintain until progression, the other three said it was an open question or a judgement call, and would typically maintain for one to two years. I think you are generally aware of the benefits of maintenance, increased increase progression-free survival, and potentially improved overall survival, but there are other threads that go into that in depth.
On the downside of maintenance, if you are not inclined to do it, as you certainly have stated, then if you do maintenance, you will never actually know for sure how well it worked. We have data on populations in studies, but you have no idea if you are the average person or not. As an individual, it could potentially do nothing for you, except for the side effects. If you went a year on maintenance, and relapsed, you would have no way of knowing for sure if the maintenance helped six months (for example), and the same would generally be true for any duration.
If however, you chose to go with maintenance, you should understand that you would be "playing the odds", and hoping for the best. Speaking with your doctor, the whole idea of maintenance is that it should be on the easy side. I am guessing that you had 25 mg of Revlimid at induction. Maintenance dosage is typically 10 mg. I have observed other posters report going down to 7.5 mg or 5 mg. You could look at it this way. Start off going two or three rounds (months) to see if you tolerated it. We do know that the side effects are less at the lower dosage, and there is no other drug to pile on the side effects. If you handled it well, you could hang in there for a year. At that point, you have reached the level of Revlimid maintenance where studies have reported a definitive progression-free survival advantage. Again, the key is that you tolerate it well, and it minimally impacts you. You could start out at 10 mg, and tweak down, if that helps, or you could to discontinue after a month or two if the side effects become onerous. Whatever you choose, good luck to you and I hope your remission is a very long one.
