Mom has AML

[Sheryl Ann]

Mom had a bmb done yesterday. I was just told by her hemo a couple hours ago her MDS has progressed to AML and she has about 6-8 weeks to live without any treatment. She went from 11%excess blasts to over 70% excess blasts.
Her hemo wants her to participate in a Zarnestra Clinical trial. We are meeting with the clinical nurse this Friday and she will began the trial by next Tuesday.
Has anyone participated in a Zarnestra trial and had success? Any words of advise/support is much appreciated since we are new to the Clinical Trial process and receiving the news she has AML.

My Mom is 79 years old and was diagnoised with MDS RAEB 11% in September of 2002. She receives tx every 4-5 weeks. Her wbc has been elavated the past few months.

Sheryl

[Suzanne]

Sheryl, I took a lower dose of Zarnestra for a year after heavy chemo put me into remission. They are doing trials to see if it could be used as a “mintenance” drug to prevent relapse for high risk patients in that first high risk year.
They told me then that there had been a 30% improvement rate and some remissions in people like your Mom using it as a primary chemo. I believe it is in the process of being submitted to FDA for approval for that purpose. There was a lot about it at the recent conference for Hemotologists in California. It is a pill-no trouble to take. And I had very little trouble with side effects-maybe some mild leg aches but I would not have noticed it if I wasn’t watching closely. I think you will find a lot more about it if you put it in the search box at the top of this site and also in a regular search engine. They are very hopeful about the results especially as a chemo for people like your Mom. As far as I know I am the only person on the forum at this point that has had any experience with it. I believe the Dr heading many of the studies is Dr Judy Karp at Johns Hopkins were I am treated. Good luck to your Mom.

[Sheryl Ann]

Thanks Suzanne for the information. I hope my mom gets the results you have seen from taking Zarnestra. I am feeling “Shell Shocked” from the news we received today. I am my Mom’s advocate in this amd want to help her make the best decision as far as treatment.

Sheryl

[Carrie]

Sheryl Ann,

I’m so sorry to hear about your mom’s transfer to AML. *HUGS*

Carrie

[shirlsgirl]

Sheryl Ann,

So sorry to hear about your mom. Hopefully your mom can find success with Zarnestra.

take care, Jody

[Sheryl Ann]

[sarah]

Sheryl, thanks for update on your mom. Will keep you and your parents in our thoughts and prayers.
Take care of yourself too.
God Bless,
Sarah

[Suzanne]

sheryl, I have my fingers crossed that your mom falls within the percentage of patients that Zarnestra helps. The doctors that I know that have worked on the trials are very excited about it. When I was in for counts a couple of weeks ago they told me that they are waiting for the vote re approving it for the way your Mom is using it-as a primary chemo. They also told me they are running new trials combining it with other drugs to see if that will make it more effective. I think they mentioned VP16 which is one of the drugs I took in my “induction” chemo that put me in remission. How wonderful that you can be around to help your parentsthrough this

[Terri]

Sheryl, Will continue to pray for you and your Mom, I hope that she does well with the Zarnestra.

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