Forums
6 posts
• Page 1 of 1
Multiple myeloma treatment philosophies
What are the different "treatment philosophies" that doctors may have for treating multiple myeloma? Have you switched doctors because you differed with their approach and agreed with another?
-
inquisitive
Re: Multiple myeloma treatment philosophies
To greatly simplify, from what I've seen is there are two main groups:
1. Arkansas group that is more aggressive, induction, followed by SCT [stem cell transplant] (or even tandem SCTs) and then maintenance therapy.
2. Mayo/others - less aggressive, induction and no SCT or maybe one.
The chemo drugs used seem to be on doctor's preferences or what is newer, or what works for the patient really.
I like the aggressive approach and it has worked well for me. But I realize it isn't for everyone. From the mental side, the aggressive way makes me feel like I'm more in control. I'm getting all this treatment and doing something about it rather than sitting and waiting and then reacting.
I read the nice article posted not long ago on the Beacon about how the wait and see approach really worked for the author. And I totally understand his point of view. For me, the diagnosis happened so quick and out of the blue and then I needed the treatment to start right away due to complications. I'm young for this disease and I wanted to fight it as much as possible now while I'm stronger and otherwise healthier. Try to get a deep a response as possible now and stay on top of it with maintenance in order to help it/me last longer.
The maintenance has not been too bad and my doctor let me know that if it is really affecting the quality of my life that we will adjust/stop. So far, so good. Though I will say that, mentally, maintenance is tough because during induction, you have this goal and there is a finish line and each week you get a little closer. With maintenance, there is no goal really and no finish line.
1. Arkansas group that is more aggressive, induction, followed by SCT [stem cell transplant] (or even tandem SCTs) and then maintenance therapy.
2. Mayo/others - less aggressive, induction and no SCT or maybe one.
The chemo drugs used seem to be on doctor's preferences or what is newer, or what works for the patient really.
I like the aggressive approach and it has worked well for me. But I realize it isn't for everyone. From the mental side, the aggressive way makes me feel like I'm more in control. I'm getting all this treatment and doing something about it rather than sitting and waiting and then reacting.
I read the nice article posted not long ago on the Beacon about how the wait and see approach really worked for the author. And I totally understand his point of view. For me, the diagnosis happened so quick and out of the blue and then I needed the treatment to start right away due to complications. I'm young for this disease and I wanted to fight it as much as possible now while I'm stronger and otherwise healthier. Try to get a deep a response as possible now and stay on top of it with maintenance in order to help it/me last longer.
The maintenance has not been too bad and my doctor let me know that if it is really affecting the quality of my life that we will adjust/stop. So far, so good. Though I will say that, mentally, maintenance is tough because during induction, you have this goal and there is a finish line and each week you get a little closer. With maintenance, there is no goal really and no finish line.
-
RayGunter - Name: Ray Gunter
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Sept 2011
- Age at diagnosis: 38
Re: Multiple myeloma treatment philosophies
Thanks for the comment Ray.
May I ask how your SCT went? How did you feel with high dose chemo? How was the recovery after SCT? How long is/was remission this far?
May I ask how your SCT went? How did you feel with high dose chemo? How was the recovery after SCT? How long is/was remission this far?
-
inquisitive
Re: Multiple myeloma treatment philosophies
Inquisitive: You may find this to be insightful.
https://myelomabeacon.org/forum/looking-for-feedback-on-recommended-first-round-treatment-t1502.html
https://myelomabeacon.org/forum/looking-for-feedback-on-recommended-first-round-treatment-t1502.html
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Multiple myeloma treatment philosophies
inquisitive -
I had 2 SCTs about 4 months apart. Both went about as well as one could hope for.
One of the reasons I attribute this to is the dose of melphalan I was given. I have the added complication of amyloidosis with cardiac involvement and my doctor thought it was best to play it a little safer. The typical dose is 200 (units - I forget if mg or what), but I was given 140 both times.
During the first one, I had one small fever and I also had an allergic reaction to a platelet transfusion. And, other than feeling bad most of the time, that was it. I didn't eat much, but never was really nauseous. And I didn't get the mouth sores either which are common. I was real good about sucking on ice/popsicles during the chemo, which I was told helps. The first week or so is pretty easy. I think you could do it from home and I've heard of some hospitals doing that. But once your 'numbers' (blood counts) start coming down, then you need to be in hospital. And once they start coming up, they go up quick usually.
I was back to work almost immediately after leaving the hospital. My stays were 16 days for first and 16 days for second. These were in Feb and Jun of 2012. I was declared in complete remission in July and have been since.
I had 2 SCTs about 4 months apart. Both went about as well as one could hope for.
One of the reasons I attribute this to is the dose of melphalan I was given. I have the added complication of amyloidosis with cardiac involvement and my doctor thought it was best to play it a little safer. The typical dose is 200 (units - I forget if mg or what), but I was given 140 both times.
During the first one, I had one small fever and I also had an allergic reaction to a platelet transfusion. And, other than feeling bad most of the time, that was it. I didn't eat much, but never was really nauseous. And I didn't get the mouth sores either which are common. I was real good about sucking on ice/popsicles during the chemo, which I was told helps. The first week or so is pretty easy. I think you could do it from home and I've heard of some hospitals doing that. But once your 'numbers' (blood counts) start coming down, then you need to be in hospital. And once they start coming up, they go up quick usually.
I was back to work almost immediately after leaving the hospital. My stays were 16 days for first and 16 days for second. These were in Feb and Jun of 2012. I was declared in complete remission in July and have been since.
-
RayGunter - Name: Ray Gunter
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Sept 2011
- Age at diagnosis: 38
6 posts
• Page 1 of 1
Return to Treatments & Side Effects