Dacogen

[Christina]

Hi everyone old and new;

I haven’t written in awhile but catch up on reading the forum every week. My dad recently tried Dacogen 35 milligrams, by injection for 5 days. Two weeks later he was in the hospital with a 3000 platlet count, and a .4 white count and needing lots of blood. He remained in this state for three weeks. The doctor called my Mother and myself to ask the family to approve a DNR!! This was a total nightmare! He finally recovered enough to go home and regain some strength. He is very weak now and lost a lot of weight. He doesn’t look like himself…it took a lot out of him. Today the doctor asked if he wanted to try it again but at a lower dose…20 ml for five days. What has been the typical dosage taken by the Forum?? Please respond I am very interested in your answers. It will help us decide what to do. Thank you!!

[Lydia]

Christina, you can go to Dacogen.com and the prescribing, side effects, warnings, etc. will all come up. The drug company lists all this. Hope this can tide you over until someone can answer you with their experiences.

Hope your dad improves and responds soon. This is a horrible, horrible disease, and just like the rest of us you have to research, ask questions yourself, etc.

God bless !

Forgot, you can go to the top of this page and click on “Search” – type in “Dacogen” and all the posts mentioning this will come up so you can read all past discussions on it.

[Christina]

Thank you Lydia…I am really hoping others from the forum respond as to the amount they are taking.

[Christina]

Lydia…another question. How often is your mom getting tx’s? My dad is getting them about every two weeks. We need to decide, supportive care or try different drugs. It’s a hard decision.

[Carl]

Christina,

I receive the 35 mg of Dacogen via IV for 5 days and not by injection. That is the way it was given in the clinical trials and recommended by the drug manufacturer. I too experience lower than my normal counts after about a week of the treatments but they seem to come back in about 3 weeks.

During the off time between treatments I have averaged a transfusion of PRBC about every 10 days to 2 weeks.

Sounds like your Dad may be sensitive to the drug, but I would get a second opinion before restarting it.

[Russ]

My experience is like Carl’s. I reach the nadir on my counts 2 weeks after starting Dacogen and then the get back up in 3-4 weeks after starting. Best of luck for your Dad and his treatment.

[Russ]

My experience is like Carl’s. I reach the nadir on my counts 2 weeks after starting Dacogen and then the get back up in 3-4 weeks after starting. Best of luck for your Dad and his treatment.

[Lydia]

Christina,

For the last month mom is getting tx’s every two weeks. Before that it was about every 4-6 weeks. When she started the Revlimid her hgc improved pretty quickly and was a “low normal” and we were so excited – she was tx-free for 3 months! Then they dived – she had started the Exjade – so we’re hoping it’s the Exjade that caused them to fall – sounds like it could be from visiting the Exjade site. Stopped the Exjade and praying the Revlimid will cause her hbc to go up again.

Tough call on what to do – supportive care or drugs. Mom has serious antigen problems now because of years of tx’s. We decided to try drugs. If the Rev (without Exjade) doesn’t work again, on to Dacogen . . .

Just have to find one that works or at least gives a break from all the tx’s. Each person is different.

Hope your dad is doing better.

[Christina]

Thank you for all of your information. My dad has decided to wait until after the holiday season to start the Dacogen again. I will keep you all posted. I think we can help each other with our experiences and I am very greatful for this forum, it is where I have turned during the past three years when I really needed help from the best! God bless all of you, enjoy every day…and stay positive!

Love,
christina

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