Decitabine chemo for MDS

[txplumber]

I am a 40 y/o male. I was diagnosed with MDS in May of this year. I have tried Aranesp injections and Revlimid, neither helped my situation. I just completed my 3rd round of chemo Decitabine, I have now gone almost 2 weeks since my last transfusion. A record. You can find out more on my website at www.IHaveMDS.com please take a moment to look it might help you or you maybe able to help someone else.

Has anyone been through the cycles of decitabine and showed progress?

[Birgitta-A]

Hi txplumber,
Thank you for your website with the video about MDS . You have probably read many abstracts about Dacogen. I have only got supportive therapy so far so I can´t give you any special info about Dacogen.
Kind regards
Birgitta-A
69 yo, dx MDS Interm-1 May 2006, transfusion dependent from dx, Desferal 4 days with transfusions for iron overload, Neupogen 2 injections/week for low white blood cells, asymptomatic

[run4peach1]

My father, 78 years old, has had one round of vidaza, and has two rounds of dacogen in. After the second round, he wound up in the hospital wih almost no platelets and no white cells, reds very low. He is coming along now. After several bags of blood, his hemoglobin is 9.2, whites 4.4, platelets getting too high at 475 (like they always shoot up, he also has MPD, and it's very rare to have traits of both MDS and MPD).

I don't know if he can do another round of dacogen. But remember, he is almost twice your age. I see that are trung arsnep next week. We're praying for some good results. We're also praying for you and all those suffering. Fight on.

[Mike Conlon]

Originally Posted by txplumber

I am a 40 y/o male. I was diagnosed with MDS in May of this year. I have tried Aranesp injections and Revlimid, neither helped my situation. I just completed my 3rd round of chemo Decitabine, I have now gone almost 2 weeks since my last transfusion. A record. You can find out more on my website at www.IHaveMDS.com please take a moment to look it might help you or you maybe able to help someone else.

Has anyone been through the cycles of decitabine and showed progress?

I began Dacogen treatment in May,2007 when I was 69. After 14 cycles of treatment, each cycle running Monday through Friday, I was declared in total remission in February, 2009. I am being treated in Hillman Cancer Center in Pittsburgh. This is a fabulous facility for cancer treatment. I will continue to be treated in eight week cycles. This is because Dacogen is so new and there is not enough data to compare long term results and tell the length of remission or if Dacogen will lead to a cure. May,2009 will be the third anniversary of U.S. approval. I am aware of one individual who was extended to a twelve week cycle, but was forced to return to an eight week cycle. It would appear that currently an eight week cycle is the outside limit for people who respond to the Dacogen regimen. A strong and dedicated wife, firm belief in prayer and Dacogen have combined to give me a new lease on life. Could you ask for more?

[Birgitta-A]

Hi Mike,
Congratulations to the good response to Dacogen!
Kind regards
Birgitta-A

[All4DK]

Originally Posted by Mike Conlon

I began Dacogen treatment in May,2007 when I was 69. After 14 cycles of treatment, each cycle running Monday through Friday, I was declared in total remission in February, 2009. I am being treated in Hillman Cancer Center in Pittsburgh. This is a fabulous facility for cancer treatment. I will continue to be treated in eight week cycles. This is because Dacogen is so new and there is not enough data to compare long term results and tell the length of remission or if Dacogen will lead to a cure. May,2009 will be the third anniversary of U.S. approval. I am aware of one individual who was extended to a twelve week cycle, but was forced to return to an eight week cycle. It would appear that currently an eight week cycle is the outside limit for people who respond to the Dacogen regimen. A strong and dedicated wife, firm belief in prayer and Dacogen have combined to give me a new lease on life. Could you ask for more?

Mike,

Could you send me an email to further discuss the extension from 4-8 weeks for Dacogen. I would love to know if there is a doctor in Pitt who I could discuss with in order to provide to my mom's doc in the hopes of extending the benefits of this drug. My email is all4dk@yahoo.com

THANKS!

Joe

[Sarah S]

Hi!
This is my first time in the forum. I am researching for my Grandpa who is 80 years old. The doctor wants to start him on Dacogen but Grandpa is concerned about the side effects. Any input would be greatly helpful.
Thanks,
Sarah

[towncarlady]

Sarah,

MDS comes in many forms, and none of us are the same. I received Dacogen beginning in September, 2008 and discontinued in February, 2009. My only suggestion to you is that you follow this forum closely. Most of us have experiences that are simular, but may yet be vastly different. Our health conditions, age, and tolerance of drugs all help us make informed decisions.

My best advice at this point is to not be afraid to question treatment plans, ask for a second opinion, and always know that the patient has rights to ask.

My best to you and your grandfather. I am open to private messages by e-mail if anyone desires to write.

[Birgitta-A]

Hi Sarah,
As towncarlady has written patients with MDS have different diseases and they respond differently to treatment.

The best drug for most patients is not Dacogen (decitabine) but Vidaza (azacitidine).

A little more than 50% of the patients respond to Vidaza http://jco.ascopubs.org/cgi/content/abstract/28/4/562.

About 16% resond to Dacogen
http://www.medscape.com/viewarticle/718485

Then about 75% of the patients with a special chromosome aberration called 5q- respond to Relvimid.

Do you know anything about your Grandpa's test results?

Many patients, like me, are afraid of adverse reactions and prefer to only accept supportive therapy like packed red blood cell transfusions and drugs for low white blood cells. We hope to be able to get newer drugs for low platelets in the future.
Kind regards
Birgitta-A
71 yo, dx MDS Interm-1 May 2006, transfusion dependent from dx, Neupogen for low white blood cells, Desferal and Exjade for iron overload, asymptomatic.

[Neil Cuadra]

Originally Posted by Birgitta-A

About 16% resond to Dacogen
http://www.medscape.com/viewarticle/718485

Only Medscape members can view the article there but I think the same news can be read here.

(Although Medscape memberships are free, they are intended for licensed healthcare professionals so consumers tend not to sign up.)