[ROBERT HOGAN]

I was treated with Revlimid 5mg and went 2+ years without a transfusion. The efficacy of Revlimid is at max 2 years and during that time I only had one transfusion and that was at the beginning. True it is very expensive but in my opinion it gave me 2+ years of normalcy. Unfortunately I am now back being transfusion dependent as nothing we have tried ( Procrit & Inqovi) did much good. I hope this is of some help. I was diagnosed in 2015 and didn’t start any treatment until 2017, like you I am 79 years old. I’m hoping for something new to pop up for treating of this specific strain of MDS.

[ROBERT HOGAN]

I also had a reaction from Revilimid 10mg, my hematologist decided to try dropping to 5mg and that worked very well for 2 years then of course it ran its course and ceased to function. I am now seeking something new that may help but it appears there is nothing in the offing that is specifically designed for just Deletion 5Q MDS.

[ROBERT HOGAN]

Tom:
I to had a reaction to the initial Revlimid, and my doctor and I decided to try a lighter dosage. We dropped from 10mg to 5 and it did it’s job for nearly 2 years with minimal problems. That may be an option for you. Like you I recently had a BMB #5 with very minimal change from the original. Having been through all the available medications, I am now in a wait and see mode for something new.

[ROBERT HOGAN]

Kathleen:

I wish you the best with your transplant therapy. Although I am in relatively good health other than MDS I doubt the government would be willing to foot the bill for me going to Moffitt. At this point I just have to hope something new pops up in the near future.

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