New Clinical Trial Working Wonderfull for me others!!!

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• April 23, 2007 at 10:07 pm #17893
  Ira N.

  Member

  Hello Members!!

  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 this drug regiment.

  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, 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

  April 23, 2007 at 10:29 pm #17894
  Bec

  Member

  Hey Ira, This sounds wonderful. I love to read good news. I hope the trial continues to work. Thank you for sharing. Please keep us updated.

  Bec

  April 24, 2007 at 4:17 am #17895
  eve

  Member

  ira

  my dad was under the care of dr silverman for many years – i credit him for keeping my dad alive as long as he was
  good luck – hope this combination of drugs is the magic bullet everyone is looking for

  eve

  May 11, 2007 at 6:38 pm #17896
  Ira N.

  Member

  Hello Forum Members,

  Thanks for the feedback. Hope all are as well as possible. I finnish the 4th cycle today and things are still going well. I wanted to give a little update on my reports/condition.

  WBC = 3.4
  RBC = 3.32
  HGB = 12.5! WOW!!
  PLT = 92

  I havn’t had a tx in almost 6 weeks!! I was going for tx 3-4 times a month up untill then. I also had a BMB last month. Dr. said it looked a little better as far as the myelofibrosis goes.

  Needless to say I am extremely happy and so is my Dr. I heard from my Dr. that Dr. Silverman has 2 patients in this trial right now that are doing real well also. I pray it is G-ds will for the medication to continue working untill they come up with something even better for us.

  Peace & Love,

  Ira

  May 12, 2007 at 1:49 am #17897
  Bkwits

  Member

  Great News Ira. Look at that HGB — amazing. Positive thoughts and prayers going your way.
  Barb

  May 14, 2007 at 11:22 pm #17898
  bluej

  Member

  Ira,
  Wish I lived closer to NY. I would certainly be interested in talking w/this Doc. I’m 55, and get so confused at times ready about all these different treatments. I am only being treated w/Vidaza 7 shots, then 3 weeks, then 7 more. Today, the Doctor would not give me my shot (2nd round start) because my white blood ct. was down. Wants to wait a week. What does that mean exactly, I certainly don’t know. Good luck to you. I’m thankful I found this forum so I can talk with someone who has MDS. It helps.

  Erma
  Kentucky

  May 15, 2007 at 3:36 am #17899
  Jack_dup1

  Member

  Ira,
  It is always great to hear good news, thanks for sharing and keep it up.
  Jack

  May 15, 2007 at 5:38 pm #17900
  Russ P.

  Member

  Ira,
  Hope your improvement keeps up. It is great to hear that something works. Is SAHA aproved by the FDA? I have AML (from MDS) and am on a clinical trial with Vidaza and PDX-101. Both PDX-101 and SAHA are histone deacetylase inhibitors so your treatment and mine are similar. I have been helped some in that I’m still alive and don’t feel too bad – but have not made the gains that you have. My cancer was much more advanced than yours.
  Russ

  May 15, 2007 at 7:38 pm #17901
  Ira N.

  Member

  Hi Russ,
  SAHA is not yet approved by the FDA. That’s why they are doing this clinical trial. Thanks so much for the encouragement. I started my treatment a month before you did and I’ve seen the major improvements within the last 30 days so hang in there and hopefully the next 30 days will be great for you!

  Bluej – If you or your Dr. contact Dr. Silverman
  at Mt Sinai Hospital (look in “Centers of Excellence” in NY) I think you may be able to participate in this clinical trial through your Dr./Hospital. Vidaza always lowers your white blood cell count when you first take it and then causes them to rise a few weeks later.

  Thanks to all for the encouragement and feedback.
  Ira

  May 16, 2007 at 2:19 pm #17902
  Russ P.

  Member

  Hi Ira,
  When did you start your trial? I started my 1st rnd on 1/29/07.
  I get my Vidaza by injection followed by an IV of PDX-101 for 5 days then off any treatment for 3 wks. Mine is a phase I trial, what is yours?
  Keep on improving – it is extremely encouraging.
  Russ

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