Has anyone heard of "Zarnestra"

[SandyB]

Hi Everyone:

Mike continues with his battle to keep his AML in remission. Been many ups and downs. On his first Consolidation he became Septic and we are so grateful he made it through.

I am intrigued by the new set of drugs that attempts to destroy the enzyme that cancer cells feed on. Has anyone here been on this drug yet, and if so, was it effective for you?

Good thoughts and prayers to each of you, and lets try to remember that: “The Only Cure for Grief is Action.”

Please help us in getting Congress to pass H. Con Res. 179.

Sandy

[lucym]

Sandy,
I believe Suzanne used Zarnestra for a year or so after she acheived remission. Do a search under Zarnestra and you will get lots of past posts. Good Luck
Lucy

[Jack_dup1]

Sandy,

I am going to start Zarnestra in two weeks. Like all of these drugs, it works for some, not for others. I’ll let you know. Suzanne in a success story for it, she has been an insperation to us.
Jack

[Suzanne]

Hey quys! Thanks for the compliment! I just got back from a vacation to Greece and Turkey after not even thinking about getting on a airplane much less dealing with a foreign country and their level of sanitation for over 5 years. It was truly a wonderful trip and celebration. Yes I did take Zarnestra for a full year in a trial after I went into remission from heavy chemo-They hoped it would help prevent relapse during the period it was most likely in high risk patients like me. Who knows if it helped, but I am still in remission. It was easy to take-pills -very few side effects. After a full year of it I did notice some “chemo brain”& slightly more sensitive skin-little things. Even at that time it was also in trial as a chemo for people who for one reason or another did not go the heavy chemo route and as I remember it was shpowing a good track record for that use even a few years ago-something like a 30% positive response. Last I asked my Docs about it they were going into phase 3 trials after hoping for an early approval from FDA that did not happen. Hope it helps in your case!

[SandyB]

Suzanne:

Mike and I have been using your story as something positive in our lives. Thanks so much.

Mike went thru his “Induction Chemo” with Ara-C and Daunarubicin. He went into complete remission.

Consolidation of Ara-C for 7 days almost killed him. His counts fell drastically and he got a blood infection and became Septic. Thank you God for saving him.

We are considering applying for the Phase III trial for Zarnestra at Loyola University in Chicago. I know that the FDA turned down approval after Phase II, only because they wanted more people tested.

Mike also was RAEB, only with a 20Q deletion. Turned to AML on May 1, 2006, and is going to beat this beast.

[Suzanne]

I hear it was also a bit political-the early turn down-Some unrelated drug that had gotten an early approval hit the headlines with complications so they were being very cautious or something.My understanding was that the application was for use in place of the heavy chemo for older patients & not able to withstand heavy chemo. When I took it to try to hold the remission I was one of a very few-. I believe one of my docs. is pretty much head (coordinator or something) of the studies on that drug in this country. Dr. Judy Karp.

[SandyB]

Suzanne:

I would be interested in contacting Dr. Karp. Would you be able to email her contact information to me at: SBarbor@comcast.net.

It would be most appreciated!

[Suzanne]

I don’t have an email for Dr. Karp. Her phone # is 410-502-5399 and her study nurse(who is usually the contact person for her) is Jackie Greer- jgreer6@jhmi.edu. There may be more contact info for her on the Johns Hopkins Kimmel Cancer center site. http://www.hopkinskimmelcancercenter.org or on the listings for the zarnestra studies on the http://www.clinicaltrials.gov site

[SandyB]

Thanks Suzanne! I will try and contact them tomorrow.

Seems as though the study at Loyola is mainly for those who have not undergone Chemo Therapy, as you had mentioned.

I’ll let you all know how this effort turns out.

[Author]

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