Hi Lillian
Thank you very much indeed for your kind answer – it was the best I ever got
! You know I belong to five support groups and post often.
The researchers at one of the best hospitals in the world – MD Anderson Cancer Center – write that it is important to treat MDS early: “Based on these, we are currently developing a new classification system for patients with lower risk disease. To do this we studied close to 900 patients referred to our center over the last 25 years with low or intermediate-1 MDS (by the IPSS score) that had not received therapy. The first important observation was that 10% of patients eventually transformed to AML. This indicates the need to treat patients with lower-risk MDS.”
http://www.mdanderson.org/publicatio...=displayfull#1
Randy has got exactly the drugs that they use at this world famous clinic. All patients are different – I have not had more than 0.2 % blast cells but had HGB 7.0 at dx. When the new drugs for low platelets are approved I will perhaps try Vidaza and Zolinza if I my platelets first respond to therapy with for example Eltrombopag/Promacta/Revolade.
I am old enough to remember all the children that were born without arms and legs due to the Swedish drug Thalidomide (that now has a “daughter” Revlimid). I am aware of that many patients with MDS have a very good effect during many years with Revlimid but dare not try that drug.
Hugs
Birgitta-A
68 yo, transfusion dependent, Desferal, Neupogen, last platelet count 48