Anyone in this clinical?

[cherylm]

Hello everyone,

I’ve been reading this forum for a while now but finally decided to post. My name is Cheryl and my dad, 71, was diagnosed with high risk mds in May. We suspect he had it for quite a while prior to actual diagnosis. In any case, he is in a clinical (NCT00313586) with Vidazza and MS-275. Vidazza for 10 days, MS-275 on days 3 and 10 then 18 days off. He is just starting round 4 but really hasn’t been feeling any better. His counts, rbc, wbc, plts and hemoglobin, are always low and he gets transfusions pretty regularly. He’s also lost a pretty good deal of weight thru the whole thing. I was wondering if anyone on the forum is in or familiar with this clinical? I just feel kind of helpless… Thanks for any response!! Cheryl

[jaxem]

cheryl
you can google vidaza & ms275 and find a lot of info on the trial. ms275 is an HDAC inhibitor which will tend to make the vidaza demethylating drug more effective. the trial is out of Johns Hopkins in Baltimore. the symptoms you state for your father are pretty classical.

[cherylm]

Thanks for the information Jack. I really appreciate it. I see your wife did vidaza, did it not work for her?

Cheryl

[jaxem]

did several cycles of vidaza but developed an infection that stopped treatment until clear. hematologist wanted to re-start on dacogen (probably because it could be IV’d rather than injected sub-q) which had recently been fda approved with good reports coming back from the field. thanks for asking about her. we continue to look for a major institution to perform a cord transplant. her age is a deterrent.

[bwf]

Jack / Cheryl:

I, too, am curious about MS-275. My mother recently started Dacogen, but had a setback after her 1st treatment, as her WBC got so low, she developed pneumonia while in the hospital – has been hospitalized for 2 weeks. Bactrim seems to have taken care of the pneumonia. But . . . next steps, get hazy. We are somewhat reluctant to resume the Dacogen because of the way it put her down, but what other options exist? Vidaza would probably have similar results. Not sure about the MS-275 . . . please let me know if you hear anything more and I’ll do the same. For my Mom, her condition limits options as well, as she is not in great shape and is having some on/off rectal bleeding which reduces her counts, even when she gets them up.

[jaxem]

brian
did she develop pneumonia while in hospital or after she got home? i’m assuming after she got home because she should have only been in hospital for 5 days max rcvg dacogen. usually after 2 1/2 weeks, counts nadir then come back slowly. was she returning to hospital twice/week for blood checks? after my wife’s 4th cycle, she got pneumonia too. i wouldn’t give up on the dacogen.

[cherylm]

Hi All,

Just a follow up to my original post: My dad had started the clinical, vidaza and ms 275, in May. We only made it to 5 rounds and his doctor pulled him out. His counts were taking a beating and they kept having to reduce the treatment dosage. There were no signs of improvement whatsoever. So now they want to try just vidaza and other meds as needed. On the clinical all he could get was supportive treatment and because he needed so many blood tx he is becoming overloaded on iron! They did another bone marrow biopsy yesterday to check on the progression. His last results were blasts at 8%; RAEB-1; from May. So now we haqve to wait to see the latest numbers. I hate this……Cheryl

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