DRUG TRIAL TEST "AXTX727" NEED HELP

[Roxana Dell’Osso]

Hello to All,

I have MDS Intermediate 1 -Risk – I’ve been approached by my Doctor to participate in a drug trial AXTX727. After going over all of the paperwork, symptoms, possible side effets, and quality of life I am a little insecure about it. Right now my counts are 86 Hemoglobin, 29 Plalettes, 2.4 White Cells.
I am able to live a fullfill life with few limitations. I would like to hear from someone that has gone thru this study and can provide perspective and advice.
I have to provide them with an answer if I am planning to participate by Monday.

Thanks,

[siouxsie17]

Hi Roxana,

I hope you are doing well. I was wondering if anyone else might be doing the same trial as my 75 year old dad and it seems you’re both in the same trial. I believe the name is slightly different or perhaps a type-o, but I think this is it: ASTX727 vs IV Decitabine in MDS. (the ASTX727 being the oral pill form of the chemo). We are one cycle in (dad’s low platelets are his biggest issue as he is platelet transfusion dependent). His team here seems to be quite excellent. I hope you have felt some benefit? Best wishes for your health – S

[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?

[Author]

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