Latest Vorinistat Results – Amazing!

[Ira N.]

Hello to all!
This is Ira N from Yonkers NY. Hoping you all are doing well. Many people emailed me and I really appreciate the love and concern!

Let me give you the good news! As of wednesday 6/13/07 my blood counts are according to Dr. Verma “normal”. HGB = 13.9, WBC = 4.5, platelets – 145k. It’s unbelievable! I havn’t had a transfussion in 2 months after going every week for months!!! I also have myeloidfibrosis and had a bone marrow biopsy 2 weeks ago. My marrow looks alot better though not normal yet. When My Dr. did the aspiration part there was alot more liquid. My marrow was really dry before. As of today, I’ve completed 5 cycles of chemo. Also, as I get stronger the side effects of the chemo are much less intense.
As far as I know, there are about 30 people doing this clinical trial right now. Some are having similar responses to mine. Others are not. This disease affects everyone differently and I guess the same goes for the chemo. Email me if you need any more information.
Peace and Love!!
Ira

[Teresa]

What is the trial that you are participating in?

My Mom is 76yrs and is RAS, transfusion dependant, has tried all the latest drugs with no success.

She is really struggling with her energy level. If anyone has any ideas to help with that I would appreciate hearing them.

Good Luck with your Great results

Teresa

[chuckk333]

What side effects are people experiencing on the drug? What and where is the drug trial?

Chuck

[Ira N.]

Here is a re-post of my 4/23/07 post that explains my condition and the trial. As of 6/15/07 I have completed 5 cycles of chemo.
As for side effects, I experience nausia which is controlled by Kytril extremely well. There is also fatigue which decreases as my counts go up.:

My name is Ira and I’m a 49 year old new member from Yonkers NY. I was diagnosed in November 2006 with intermediate risk MDS with myelofibrosis. I have 1% blasts and no chromosome abnormalities, but very low HGB, low WBC and platelets. I was affected with a strange rash from head to toe which went away when I started these drugs.

Up until now I have been very anemic – HGB around 6 and have been getting transfusions 3-4 times a month. I also have hepatitus C which limits what treatments I can tolerate. I started a clinical trial in February that is a combination of 7 days of Vidaza (azacitidine AzaC)55mg/m2/day via injection, and starting on day 3 to day 16 I also take 200 mg. a day via pills of an experimental drug called Vorinistat Suberoylanilide Hydroxyamic Acid (SAHA). From day 17 to day 28 I take nothing. As of last wednesday 4/23/07, I have completed 3 cycles, and my HGB was at 10.9!! My energy level is also 10 times what it was only a month ago!

The trial calls for 4 cycles, and if it is working at that point I can continue to take the medications. Being a clinical trial there is no cost involved.

The chairperson for this study is Dr. Lewis Silverman at MountSinai Hosp. in Manhattan. My doctor (refered to me by the MDS-Foundation)is Dr. Amit Verma at Albert Einstein/Montifiore Medical Center in the Bronx which is a center of Excellence. Dr Verma is WONDERFULL!! A real mensch and very very caring. Three other Drs. in the NY area who will remain nameless, refused to see me because I did not have my medicaid approved yet, unless I paid them cash up front. Dr. Verma told me not to worry about money and just to worry about getting better. He told me to come right in and immediately gave me his cell phone number and his pager number, and told me to “call him anytime I needed to talk to him”. Drs. like this are few and far between. If you are in the New York area I highly recommend you call Dr. Verma. Just look him up in the New York area “Centers of Excellence”.

If anyone wants to talk to me about the clinical trial or Dr. Verma email me at ira44@verizon.net and I’ll be happy to share whatever I can with you.

I wish everyone and their loved ones much love and recovery!!

Ira

[Teresa]

Congratulations!!!

That’s wonderful news, keep up the good work with your counts. I am going to ask my Moms DR about the Vorinistat. She had tried the Vidaza but the results where short lived.

Teresa

[Ira N.]

Correction:

The dosage of Vorinistat is 400mg. per day (4 100mg. gelcaps) not 200mg. Sorry for the mix-up.
Thanks to all for the encouragement!

Ira

[Mary4Mike]

Ira N.

I have been following your “success story” and would enjoy having an update on your progress. Please give me and the rest of the forum the latest on your treatment and the results you are having!

Mary

[covergirl]

Hi IRaN.,

I too would love additinal information and also the exact type/classification of your MDS.

Best wishes for continued yourhealing.

[chuckk333]

Ira

Please include in your update, what is your current description of your experienced side effect. Thanks, Chuck

[Ira N.]

Hello friends,

Thanks so much for your caring and support.Today is Sunday 7/29/07 and I will start cycle 7 tomorrow. As of Wednesday 7/25 my cbc’s are as follows: Hgb 14.5, RBC 4.0, WBC 6.5, Platelets 174k. My liver enzymes though elevated, are holding and my liver Dr. sees no imediate concern or danger. I have had Hepatitus C for 20 years and am asymptomatic. Last liver biopsy 6 years ago showed no signs of liver damage other then enlargement. Will be doing a liver biopsy after this next cycle of chemo. Please seemy updated signature at the bottom to see my dx.

I must add that I feel like a new man compared to 4-9 months ago. My energy level is fine and I am thinking about rejoining my gym! 5 months ago I could barely get out of bed.

As for side effects, I experienced nausia which was for the most part controlled by Kytril, soreness at the injection sites which went away after a few days, fatigue, loss of appetite which was helped by smoking some weed, and some sleeplessness. All in all pretty tolerable considering the results. My Dr. wants to lay off after this next cycle and see how I do. I will keep you all posted.

Of course my concerns are will it last? I’m trying to just take it a day at a time and enjoy the sense of well being I am experiencing but it is hard. At the same time, I’m staying close to the lab to keep an eye on my levels.

To all I wish Peace, Love, Health, and Happiness!

Ira

[Mary4Mike]

Ira N.

All of us on this forum have been following your success story. We are ready for the latest news on your medical journey. We pray that all is well with you.

Hope to hear from you.

[Ira N.]

Hi all!

Sorry it’s been a while but I’ve had major computer problems. I am now back online and doing GREAT! Tomorrow will be 10 weeks since my last chemo and I’ll see my doctor. As of last week, all of my CBC counts are still in the normal range. HGB = 15.9, WBC = 9.0, Platelets 135K, and I feel great! After being so so sick, this really seems like a miricle! I must add here that besides the chemo I have many many people praying for me and I’m sure that that is part of the success so far. I also have a positive mental attitude and I know that that helps too.

I do feel strongly that this treatment is the answer in my case. According to my doctor there are about 30 or so people doing this clinical trial. Many are having a good response. It seems to take hold during/after the 4th cycle which was also my experience. If there is anything I can do to help anyone who is thinking of trying this contact me at my new email – ira44@optonline.net

I continue to pray for us all to have peace, love, and health!

Ira

[chuckk333]

Ira,
I’m sure that you have mentioned it before, but now that you’ve been getting treatments for a while, What side effects did you experience??

[jga_socal]

FYI. This drug is spelled a little differently, Vorinostat, at ClinicalTrials.gov .

There are several trials going on with Vorinostat for MDS patients. They are all recruiting patients.
Ira is most likely in this study: ” Vorinostat and Azacitidine in Treating P…yeloid Leukemia “. ClinicalTrials.gov Identifier: NCT00392353. Study ID Numbers: CDR0000511887; NYCC-6898; NCI-6898

Continued success Ira!
Jim

[Ira N.]

Chuck

As for side effects, the worst part was nausia which was for the most part controlled by Kytril. Ialso experienced soreness at the injection sites which went away after a few days, fatigue, loss of appetite which was helped by smoking some weed, and sleeplessness. All in all pretty tolerable considering the results.

Ira

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