Dacogen Results and Thoughts on Drug

[MikeyB]

My uncle had a great deal of success with Dacogen, and will continue to use a bit longer, does anyone else have any thoughts or experiences with this drug.

Thanks, Michael

[Jim]

Michael,
I’d like to hear more about your uncle’s experience. I am into round 2 of Dacogen treatment and hope I have success to report after the next round. My doc thinks it’s my best chance.
JW

[krishananth]

Hi,

Please could you let me know
1. the medical name for Dacogen
2. How is this to be administered
3. Any side effects
4. How are the after effects /results of this

Thanks
Sandhya

[JaniceR]

Hi… My father has been on Decitibine (Dacogen) since May. He gets it through a regular IV for five days in a row as an outpatient. It takes about 1-1/2 hours. He used to get it every fourth week. Now he’s getting it every sixth week. His blasts went from 80% down to 15%. The second week after his chemo, he needs to get alot of platelet tx and red blood tx. His numbers start to come back ON THEIR OWN by week four… which is why they are stretching out the time inbetween treatments to six weeks now. He gets another BMB in December and we’re hoping the results are 0% blasts… we’ll see. They recently gave him something to prevent iron overload, but that’s only because HE asked about it since he was getting SO many tx. If he didn’t inquire, they probably wouldn’t have given him anything. They did a check after he asked and said “oh yeah, guess it wouldn’t hurt to give you something for iron overload before it gets out of hand.” It pays to be as knowledgeable as possible with this disease and NOT to leave it all in the doctors hands with no questions asked. Don’t be afraid to Ask as many questions as you can. They’re doctors and they ARE getting paid.

[Russ]

I just finished my 3rd round (Dacogen) but it is too early to tell anything definitive. Blasts in my peripheral blood seem to be coming down but doc wants me to do 2 more rounds then another BMB. My BMB in August showed 18% blasts. I have had 2 PRBC txs since I started Dacogen in August.
I seem to hit a low point on WBCs and PLTs 2 weeks after I start each round then they build up from there.

[Lacey]

My mom was started on Dacogen just after Thanksgiving. At that point she was recently diagnosed and had drastically lost 90 lbs (within a few months). I felt we would lose her at any time and feared the Dacogen may push her over the edge. The first round she was hospitalized after because her counts were so low. On the second round, she did much better and they monitored her counts daily after the 5 days of Dacogen. I am happy to report she has gained back 8 lbs and is on her 3rd treatment. She tolerates it well and has more energy than before she started the treatments. She recently returned to Moffitt for the first time since she had started the Dacogen and they were happy with her rogress. She will continue for 3 more months and then they will check her again there to see how she has responded (perhaps a bone marrow test). Just wanted to let you know how well she has done on it.
Lacey

[Lacey]

Also they said this drug could put her in remission. Had you heard that?

[candy]

My Mom was recently DX with MDS RAEB-2. SHE IS SO WEAK AND LOOSING WEIGHT RIGHT NOW. WE ARE SO WORRIED. SHE IS CURRENTLY TAKING PROCRIT AND PLANS TO START DACOGEN IN THE NEXT 3 WEEKS OR SO. I AM CONCERNED ABOUT THE SIDE EFFECTS AND IT LOWERING ALL 3 CELL TYPE COUNTS. HOW DO PATIENTS ACTUALLY DO ON THIS DRUG? DOES ANYONE HAVE PERSONAL EXPERIENCE THEY CAN SHARE? MY SIBLINGS AND I ALL LIVE A DISTANCE FROM MY PARENTS AND ARE WORRIED HOW MUCH SUPPORT SHE WILL NEED ONCE SHE STARTS TREATMENT. THE DOCTOR WILL TELL US VERY LITTLE.

[Carl]

Lacey,

I have gone through 5 rounds of Dacogen treatments. I start another one next week. The treatments generally go OK and I feel slightly more tired the first week after the treatment ends. All of my blood counts take a nose dive about 10 days after the treatment ends and I have to have a transfusion the second week.

The drug has been reported to put some people into remission, but it is not permanent or a cure for the MDS.

On the good side, I had a BMB after 4 rounds and there was a slight improvement in my bone marrow which I hope will continue with future treaments with the Dacogen. I will get another BMB after my 6th round to see what is happening.

Candy, I lost about 30 pounds last year for no obvious reasons but I have stablilzed now and the Dacogen has not made my weight change any so far. Has your Mom gone to see a Hemo. at MD Anderson? They are a great place to go for MDS, and I went there for a second opinion in 2004.

Good luck to both of your Mom’s on the Dacogen.

[Author]

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