Do you do maintenance therapy with amyloidosis?

00:00:08:16 - 00:00:11:04
 
Is maintenance therapy done with amyloidosis?

00:00:12:05 - 00:00:32:19
 
So maintenance therapy and amyloidosis is a very controversial topic. And a lot of this has to do with the fact that there has never been a trial done looking at true maintenance therapy and multiple myeloma. So the truth is that we don't know the right answer. And a lot of this has to do with how far or how comfortable we are extrapolating data from multiple myeloma, much like lots of other things in amyloidosis.

00:00:32:19 - 00:00:54:05
 
When we look at maintenance, we often extrapolate from what we know in multiple myeloma. And of course what we know in multiple myeloma is that in general maintenance and multiple myeloma, especially with first line of therapy for sure prolongs duration of remission and keeps the myeloma under control for longer. Keeps that M spike light chains suppressed for a longer period of time.

00:00:54:07 - 00:01:15:15
 
It also seems pretty clear that maintenance therapy helps people to live longer with multiple myeloma. That's a little bit more controversial, but that does seem relatively clear nowadays. And amyloidosis, that's never been proven. So the studies that have been done in multiple myeloma that prove those findings, they may apply to amyloidosis also, but we have no idea because it's never been proven.

00:01:15:17 - 00:01:40:20
 
And one thing that we know about amyloidosis is that it's a little bit different from multiple myeloma in the sense that multiple myeloma, once those bad plasma cells are suppressed, they are pretty sick. And so they like to grow relatively quickly and come back not universally, but they do like to proliferate pretty quickly, whereas in amyloidosis, the plasma cells or those sick cells in the bone marrow that really underpin the disorder, they're often relatively benign.

00:01:41:02 - 00:02:04:13
 
They happen to be making this protein that's extremely toxic and forms amyloidosis in the different organs. But the cells themselves are relatively benign, which means that they actually don't grow that quickly after you suppress them using stem cell transplant, chemotherapy, whatever we do. And therefore, it stands to reason that the maintenance idea from multiple myeloma may not be relevant in amyloidosis because if the cells aren't growing quickly.

00:02:04:13 - 00:02:24:07
 
Then it may, maintenance may not make a difference. And so different centers approach this differently. To emphasize, there is no clear right answer. I'll tell you that I don't routinely use maintenance and amyloidosis with the idea that I look at everything in medicine in terms of risks and benefits. The benefit is that it could help to keep it under control for longer.

00:02:24:08 - 00:02:47:10
 
That's not always beneficial for long term outcomes, like how people feel and how long they live for. But could help to keep it under control for longer. We have no idea if it helps people to live longer with it, but when we think about maintenance therapy, which is basically, as we know, continued therapy for as long as the disease stays in remission, we're talking about being on a medication costs inconvenience of coming into the clinic, side effects from a therapy.

00:02:47:10 - 00:03:07:14
 
So there's pretty clear risk to this. And especially nowadays with COVID, you know, being on chemotherapy presumably increases risk. And so when I look at this issue of maintenance and amyloidosis, the benefits could be there. But they're pretty theoretical and unclear versus the risks which seem very real to me. So I don't routinely do maintenance, but I do have colleagues that do it.

00:03:07:14 - 00:03:24:11
 
And I think that that's perfectly reasonable. It's just based on it's just a question of how we interpret the data. But I also think it's an important discussion to have with patients. So I often have this discussion say I don't routinely recommend maintenance therapy for what you have, but this is the reasons for doing so. And some people do it.

00:03:24:11 - 00:03:30:01
 
And then we have, you know, informed discussion about whether or not it could be the right decision for that individual person.