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Clinical Trials Considering or participating in research studies

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Old Mon Feb 3, 2014, 02:32 AM
Bambam Bambam is offline
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Location: Vancouver, BC, Canada
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CPX 351 Trial for MDS/AML

When my "low risk" MDS RA turned to AML in July 2013, I was advised of a drug trial for which I qualified. After reading the literature, I decided that if the computer picked me, I would participate - if not for me, perhaps my involvement could help others.
The chemo drug combo is called CPX 351 made by Celator. It uses cytarabine and daunorobicin but unlike the standard of care 7/3, the drugs are formulated in a liposome, or fat, that targets leukemia cells and hangs on them until they die. The chemo is bright purple and the nurses would comment they'd never seen that beautiful colour before. I pretended it was purple grape juice as it entered through my Hickman line! I only needed one course of induction as I went into full remission after that. Once my counts had sufficiently recovered, I received a round of consolidation, and then, about six weeks later, the final dose. It was not an easy time, as I had it all - C.Diff, bilateral brain hemorrhage, Sweets Syndrome, brachycardia, staph epidermis necessitating removal of Hickman line, negative reactions to platelets etc etc. Now, it has been six months since I started chemo and about three months since I finished. BTW, I didn't lose my hair!! I feel quite well most of the time, although have a nasty lung infection as I write.
I would encourage you or your loved one to join a drug trial if you qualify. Not only is one watched extremely carefully, but there is a lot of personal satisfaction in helping to find a cure for this awful disease.
I don't know whether the AML will return, but I do know that the MDS remains and shows itself somewhat in my weekly bloodwork. As I understand it, the MDS was not affected by treatment. We shall see ... Perhaps, together with CPX 351, I can prove all the more negative predictions wrong.
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DX MDS RA Low Risk August 2012. DX Changed to MDS RAEB1. Progressed to AML July 2013. Participated in clinical chemo trial CPX351 and relapsed four months later in March 2014. Maintenance chemo -VIDAZA (AZA) stopped after 4 rounds. Awaiting full report from BMB.
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Old Mon Feb 3, 2014, 12:32 PM
Whizbang Whizbang is offline
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While I received my transplant I was part of at least 5 different studies, one took away the anti-mucositis drug I should have gotten (I was the in the control)... I got mucositis pretty bad, but in the end it was well worth it if my contribution helped...
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Married, father of three daughters; now 46; diagnosed w/ Major form MDS 6/18/2013; had low counts across the board; Multiple chromosome abnormalities; Finished 2nd round Dacogen 9/13; SCT - Oct. 31, 2013; Sibling match 10/10 ; 5.5% blasts down to 3%, now 1% (post BMT)
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