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DACOGEN MY SAVIOR

This topic has 14 replies, 1 voice, and was last updated 16 years, 10 months ago by Saritha.

Viewing 15 posts - 1 through 15 (of 15 total)

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April 30, 2007 at 5:24 pm #17951

SRMaven
Member

Hello All, (& thank you June for reminding me I should make this post)
Just wanted to let all know that Dacogen (Decitibine) has been my savior. After getting to the point of needing rbc t-fusions every 2-3 wks, I found the FDA approval of Dacogen (5/06) & did the 4 Series b/t 6/19-9/29/06.
My counts are up & have been holding! IE: I am now (5/1/07) treatment free !! Yippee ! and recommend Dacogen as a great treatment. Good Luck 2 All. SRMaven

April 30, 2007 at 7:34 pm #17952

choijk
Member

Stephen,

It is so exciting to hear that another MDS patient is doing so well! I wish you continued success with Dacogen! Hope to hear from you soon!

May 1, 2007 at 6:13 pm #17953

shellbivens
Participant

Stephen,

I am glad to hear some good news! Would you mind posting additional info regarding your Dacogen treatment? I am interested in knowing about side effects in particular. Thanks!

Shellena

May 1, 2007 at 10:24 pm #17954

jaxem
Member

stephen
really great to hear your good news. my wife is starting her 3rd round of dacogen on 5/7 & we have our fingers crossed.

May 2, 2007 at 1:57 pm #17955

Carl
Member

Stephen,

Glad to hear someone is doing so well on Dacogen. Unfortunately it did not work for me and in fact I got worse by transforming from RA to RAEB II, skipping RAEB I.

May 3, 2007 at 4:09 pm #17956

jonelle
Member

Stephen, I am so happy for you!!
My husband, Jack, has completed his 3rd round of dacogen, he is doing much better. But the Dr. recommends another 3 rounds.
Jack doesn’t want to do it simply because the Dr. isn’t able to convince him that it is necessary. Jack wants to wait a bit. Can anyone suggest a reason why it has to be done again so quickly?
Thank you!

May 7, 2007 at 10:18 pm #17957

jaxem
Member

jonelle
Pharma has stated that dacogen be given for 4 cycles but it is up to the hematologist. get a good reason from the doc why 6 is required. unfortunately, the only way to see what’s going on is to do a bmb. the results should make the answer clear.

May 10, 2007 at 10:34 pm #17958

jaxem
Member

carl
sorry to hear about your bad experience w/ dacogen. did you go through at least 4 rounds?

May 21, 2007 at 3:26 pm #17959

Kathy7964
Member

Dacogen has been our savior too. That is such good news. My Dad had one round of Dacogen and ended up in the hospital for almost three months. After he got out he need tx almost 2 times a week for a couple months but now he hasn’t had to have a tx for FOUR months and his counts have been holding up. His doctor told us he should have more than one round but because he got so sick we are just going to wait and see. We are so fortunate that he is hanging in there.

May 26, 2007 at 2:31 pm #17960

Carl
Member

jaxem,

As my signature profile says I went through 7 rounds of Dacogen.

May 27, 2007 at 8:47 pm #17961

jaxem
Member

carl
sorry i missed reading your profile. where are your thoughts about where you go from here?

May 28, 2007 at 2:21 pm #17962

Carl
Member

Jack,

Right now I am just getting transfusions and Aranesp shots. I have tried all the approved meds. except Vidaza and it is similar to Dacogen. Perhaps the researchers will come up with something new and I’ll give it a try.
I’m not a fan of medical trials so I have pretty much ruled those out too.

June 11, 2007 at 2:49 pm #17963

JaniceR
Member

Carl:
Carl:
I was just on the board reading old posts. I saw your post that dacogen did not help you. My father was on dacogen from May 06 to Jan. 07. When he got the BMB back in Jan. 07 they told him that it didn’t reduce his blasts at all and they had to look into other options. I think his blasts actually increased because when I looked at the report it said 80% blasts. We took him for a second opinion with Dr. Goldberg in Hackensack, NJ, who was kind of doom and gloom and told him he’s very lucky he’s still alive (RAEB-T – Jan. 06). He suggested Dacogen (since he tolerated it well and had no side effects) and adding Valproic Acid to it (a pill people take for epilepsy)…keeps the dacogen in your system longer, giving it more of a chance to work. Dr. Goldberg gave all this information to our doctor in Morristown. Dad’s been on it for three rounds and his bone marrow biopsy just came back with 12% blasts. Our doctor is thrilled at the results. I just thought this information might be of use to you. And, by the way, I don’t believe that this is a clinical trial. My dad didn’t sign up for a trial. The one doctor just suggested it to the other and ordered it.

June 13, 2007 at 4:07 am #17964

jaxem
Member

fortunately my wife’s last bmb performed a week ago showed improvement from 5 to 2% blasts after 3 rounds dacogen. unfortunately, dacogen doesn’t work for everybody which must be heartbreaking.

June 21, 2007 at 7:02 pm #17965

Saritha
Member

Hi
Read all the reviews of Dacogen….
My dad is on only transfusions without any medication…diagonised as MDS 10% blast aug 2006…
We are from India and doctors here have just no idea on Dacogen how it works and the results…
Is it recommended in such a scenario to go ahead with the medicine if we can procure it or just remain transfuion dependant….He is just 58 years old with monthly transfusions and low platelet count.
Thanx
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