[Stann]

Re: sCR even in High Risk patients on carfilzomib

by Stann on Mon Dec 17, 2012 4:37 pm

Hi Stan W.
You are assuming that most people gave up a year of their life to have transplants.
I was miserable for 3 days. Of course I wasn't at full speed for a few months but I'd hardly call it miserable. Within a few weeks I was back "in command" on the farm. Not digging holes, pulling weeds or birthing calves, (don't have cows anyway) but pointing, gesturing and making decisions. I vividly remember how great it felt to be back "in the mix". And that was about 1 week after discharge from 18 days in the hospital.
I think being "happy" about a transplant says a lot. It's obviously not scientific by any means but it tells me that the majority of people who had them thought it was worth it.
I had a tandem and a friend of mine had a tandem. We both were very "happy" we had gone through the process. I had another friend who was miserable for 4 weeks (very weak and nauseous). And he had no response to the transplant either.
But he was back on his feet, hitting the treadmill every day within 6 weeks.
I do like your idea of the poll. But it might be hard to conduct as some people opt for "consolidation treatment" after transplant and others are on maintenance. Not sure how that would be figured in.

[Mark]

Re: sCR even in High Risk patients on carfilzomib

by Mark on Mon Dec 17, 2012 5:22 pm

Hey Stann,

I hope all is well with you. As you know I am not a big fan of autos because I am young enough to do an allo. I did an auto though and I agree with you. You feel worse than any human being should feel for a few days and than you get back to feeling normal in a few weeks or so. Take notice that it is usually patients that have never done an auto that talk about the poor QOL they lead to. Not sure how they would know since they had never done one. Here is a small study pertaining to auto and allo recipients:

"The initial sample was composed of 30 patients while 26 were ultimately evaluated at the three points. The set of results indicated a positive impact on Health-Related Quality of Life six months after transplantation. Despite the fact that there were additional concerns and some aspects such as physical and functional aspects were affected 30 days after the procedure, the Functional Assessment Cancer Therapy scores obtained six months after HSCT improved in all components, REACHING LEVELS ABOVE THOSE PRIOR TO THE PROCEDURE, especially physical and emotional aspects and the relationship with the physician."

http://www.scielo.br/scielo.php?script=sci_arttext&pid=S0104-11692011000600007&lng=en&nrm=iso&tlng=en

I guess humans are tough enough to withstand "lethal" doses of chemotherapy!!!

Mark

[Stan W.]

Re: sCR even in High Risk patients on carfilzomib

by Stan W. on Mon Dec 17, 2012 6:56 pm

Stann & Mark,
Yes, I guess I shouldn't assume. But I keep hearing of people achieving the same results without SCTs. And, at the same time I hear those that had an SCT having to go back on meds. So, what's the correct choice. I guess there really isn't any as this disease affects us all differently and, the meds and side effects also vary from one to another.
But, if there's something out there that could put me in a good place without a SCT (like this trial with Carfilzomib is showing) why not go in that direction for as long as possible.
Maybe I'm being optimistic about a new, better treatment coming along.
I've got to put my faith in something.

[Stann]

Re: sCR even in High Risk patients on carfilzomib

by Stann on Mon Dec 17, 2012 8:47 pm

HI Stan W.
The SCT is just another tool for using a different chemical to kill multiple myeloma cells as I'm sure you already knew. I think it's important to attack this thing from as many angles as possible, so if you decide to never have an SCT, you have eliminated one of the most effective "tools in the shed".
And I think it's better to have it earlier rather than later. I guess stats don't support that statement, but it seemed right to me
I'm going to milk my transplants (melphalan) for as long as I can, using maintenance Revlimid.. When it fails (and it will fail), I still have pomalidimde and carfilzomeb on the menu. If that gets me out 5 years, I expect there will be a few more agents available.
Or maybe with my extra stem cells, there will possibly be different therapies available in 5 years that require the use of stem cells as a rescue.
I'm sure I will always wonder if I should have done the Allo. I have 4 siblings and odds are one of them is a match. But at the time, my myeloma specialist told me to go somewhere else if I wanted to go that route. He thought the risks of the procedure were not even close to being worth the benefit And if I died during the procedure, vs getting the "guaranteed" 5-10 years out of an SCT plus novel therapies, it would have been a bummer for my teenaged kids.
If my kids were living on their own, I might have pushed for the Allo.
I'm just sharing my thought process as to how I approached my own situation.
Stann

[Stan W.]

Re: sCR even in High Risk patients on carfilzomib

by Stan W. on Tue Dec 18, 2012 10:09 am

stann wrote:
> HI Stan W.
> The SCT is just another tool for using a different chemical to kill
> multiple myeloma cells as I'm sure you already knew. I think it's
> important to attack this thing from as many angles as possible, so if you
> decide to never have an SCT, you have eliminated one of the most effective
> "tools in the shed".
> And I think it's better to have it earlier rather than later. I guess
> stats don't support that statement, but it seemed right to me
> I'm going to milk my transplants (melphalan) for as long as I can, using
> maintenance Revlimid.. When it fails (and it will fail), I still have
> pomalidimde and carfilzomib on the menu. If that gets me out 5 years, I
> expect there will be a few more agents available.
> Or maybe with my extra stem cells, there will possibly be different
> therapies available in 5 years that require the use of stem cells as a
> rescue.
> I'm sure I will always wonder if I should have done the Allo. I have 4
> siblings and odds are one of them is a match. But at the time, my myeloma
> specialist told me to go somewhere else if I wanted to go that route. He
> thought the risks of the procedure were not even close to being worth the
> benefit And if I died during the procedure, vs getting the
> "guaranteed" 5-10 years out of an SCT plus novel therapies, it
> would have been a bummer for my teenaged kids.
> If my kids were living on their own, I might have pushed for the Allo.
> I'm just sharing my thought process as to how I approached my own
> situation.
> Stann
Stann,
I'll save the big tool for the big job (SCT) if and when I need it.
I do want to thank you for your insight and opinions. It adds more to the stack of info I've already accumulated.
-Stan