Whether to try Dacogen again.

[Kathy7964]

Just wanted some advice for my Dad. He had one round of Dacogen back in 2006 and ended up in the hospital for 3 solid months. He had sweets syndrome (they think) and was so sick but was tx free for almost a year and a half. He just completed 4 rounds of Vidaza with no success. His doctor wants to give him 1/3 of the dose of Dacogen he received before but we are afraid. He is wanting to just get transfusions. Was wondering if anyone had some input.

Thanks

[billboy]

Hi Kathy,

That’s a really significant reduction in dosage so it would appear to be a worthwhile effort. I really got clobbered my first cycle of Dacogen with my ANC dropping to 50 and my platelet count down to 4000. However, my doctor then reduced my dosage 25 % (from 40 to 30 mg). I was fortunate and did not experience the necessity of having to be hospitalized following any of my four cycles. Of course I’m enjoying my fifteen consecutive months of transfusion free living – end up making lots of medical facility visits anyway, but that’s life.

Hope & pray your dad does well either way.

Bill F

[Kathy7964]

Thanks for your input. His doctor feels he is strong enough to try it again. But my Dad is more concerned with us having to go back and forth to the hospital again if he has a bad reaction to it. We are going to wait a month anyhow to make a decision. So hopefully he will be willing to try the Dacogen again.

Thanks again.

[jaxem]

Kathy
I’m not an advocate of changing a prescribed dosage from what was tested to be successful. Sweet Syndrome is a dermatological malady that is usually treated with steroids. have you discussed giving steroids to your dad with the doc? Was the Vidaza given at prescribed dosage? There’s not that much difference between vidaza & dacogen. When you say vidaza is not working, what were his blast levels before & after 4 rounds of vidaza? Is he still at 3% blasts? Have you asked about clofarabine & mylotarg?

[Kathy7964]

He just had a bone marrow last week and his blasts are still low at 3%. The doctor told us that they base the dosage on age, kidney function and weight I believe. The doctor the dosage of Dacogen was too much for his body to handle so they would give him 1/3 of that dosage. My Dad has decided to not to anything at this point except get transfusions and reconsider the Dacogen in a month or so. I am praying he decides to give it one more try because he was in remission for so long after the Dacogen. I have never heard his doctor say anything about clofarabine or mylotarg. His doctor thinks he is strong enough and it’s not time to give up yet. I hope my Dad feels the same way but I can’t speak for him because I don’t know how he feels and what it must be like for him to go through this.

Thanks for your input.

[jaxem]

Kathy
I’m not following. he started with 15% blasts and is now at 3% which is great. what was he taking to get down to 3%? why take anything if he’s at 3%? why not watch & wait? does he want a stem cell transplant?

[jaxem]

Kathy
Another thing, dosage should be based upon body area of which weight as well as height are components of actual dosage. Also liver as well as kidney function should be a requirement of using dacogen or not. I never heard of limiting dosage depending upon age or physical limitations, however, I’m not a physician. I would look into this further if I were you.

[billboy]

Hi Kathy,

I can easily understand your father’s doctor wanting to start the low-level dacogen. For one thing blood transfusions have risks, however slight, for some significant side effects. Also the doctor has to take comorbidities into account when determining his recommended dose, when prescribing drugs for on or off-label usage. If your father just continues to be supported by transfusions, then it’s likely his blast count will continue to increase – with the dacogen he’ll have a chance of reducing his blast count. I imagine you are well aware of the risks of transfusions, but I’ll provide the link below for a refresher.

http://www.rch.org.au/bloodtrans/adverse.cfm?doc_id=5323

Bill F

[Kathy7964]

Thank you for your help. But unfortunately my Dad passed away yesterday. He had pneumonia and congestive heart failure. He just couldn’t fight it any longer. He died so peaceful and looked like he did before he got this horrible disease.

Thank you again. And I will continue to pray for everyone on here and their families.

[sdrake]

Kathy,

I am so sorry to hear of your Dad’s passing. He is at peace and free from this horrible disease. I pray that God gives you and your family the strength to get through this sad time. Know that many thoughts are with you.

Take care,
Shari

[PupsRule]

Kathy — You’re in our prayers and hearts.

[jaxem]

Kathy
So sorry to hear of your dad’s passing. Amen to it being a horrible disease.

[Author]

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