[Roy Powell]

Hi Bridgette:
I have had MDS 5Q deletion for about a year. The standard for low risk MDS is Revlimid and this works well, at least for me. Problem might be the price, which is now $21,500 a month. If your insurance will cover most of that, then there are places that will cover any co-pay. (Congress is after these pharma people).
My readings are normal now and vary only a little. I know of people on this same stuff and they are at 15 years now.
Nobody can predict the future but go out and live your life.
Roy
82 yrs.

[Roy Powell]

Donna:
Don’t be sorry for the rant… we have all been there. Some Docs will stand on a pedistal and and tell you what to do but any final decision is always yours … always. Don’t be bullied by a white coat.
Roy
82 yrs.
MWM

[Roy Powell]

Eric: I am considered low risk also but have only had this for about a year. HGB is high now on Revlimid at 14 and wbc and rbc are both 4.0. Plt is only 89K which is low. Having had this for 8 years is low risk for sure. The Docs gave me 4 years.
I have been told that this is not a terminal thing for everybody (NIH) but there seems to be no way to tell who will outlive it. If Revlimid fails as it does for some after a period then there are other options that a Doc can use. Would like to know what you come up with down the road … sorry I can be of no more help…

Roy
82 yrs.
MWM

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