[Roxana Dell’Osso]

Hello Siouxsie17,

Thank you for getting back to me. Up to now, I haven’t made a decision on that trial, but the lead time is coming to an end. I am still unsure if I should do it or not. I still am able to function … feel a little bit more tire, and out of breath, but otherwise ok. I am fearful that if I start this trial everything is going to go downhill. I am eating healthy, exercising and doing meditation too. Concerns me the fact that all my counts will go down, and probably Hmg. and platelets will go up, but my white cells won’t go back. Quality of life is very important to me.

How is your father doing? Any serious side effects?

[Roxana Dell’Osso]

Hi,
I was diagnosed with MDS 10 years ago, I was considered low risk and no treatment necessary “watch and wait”, but it seems that old good things come to an end. In the past 2 months I have moved to be Intermediate Risk, and I was talked about a drug trial ASTX727. I did a search and there is a person in this forum that was placed in this study. Raphael was placed in this study a year ago (April 2017), I was wondering if there was a way to know how his trial is going. Today I had a talk about this trial, and came out more worry than before. Right one I am an active person and able to do most things – a few adjustments at this point but active. I am scare that the trial will reduce my quality of life, and unsure if it will provide me with a better prognosis.
Based on my current state the prognosis is around 3 years life expectancy…
Any advice, especially if you have done this trial would be much appreciated.

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