Dacogen for MDS

[anandhi]

hai all,

I am Anandhi, I am new to this forum. My uncle 53yrs old was diagonised with MDS RAEB2, in Jan 2009. Till now he is taking Lenome 5mg Tablet daily, blood transfusion (once in a month), Neupeg Injection whenever necessary and Platelets transfusion(till now he has taken once).

Last week doctor has told my uncle about the Dacogen drug. I searched the net to collect details about the patients who had received dacogen dosages. I would like to know whether anybody is cured using dacogen for MDS.

Anxiously waiting for a reply.

regards
Anandhi

[Neil Cuadra]

Anandhi,

Dacogen (decitabine) is not a cure for MDS but it can extend the lives of patients. The only cure for MDS is hematopoietic cell transplantation, i.e., a stem cell transplant or bone marrow transplant.

This article, which can be downloaded in full as a PDF file, summarizes current information about Dacogen. Although the article is written in medical language, you should be able to learn more about the effectiveness (efficacy) of Dacogen.

Studies have found that Dacogen can be more effective than supportive care alone (transfusions, growth factors like Neupogen, antibiotics, etc.) but like other drug treatments it has its own risks. The doctors have to weigh the tradeoffs for each patient.

The median age of diagnosis of MDS in the United States is 71, which limits treatment choices. At age 53 your uncle is young enough for a transplant, if he's otherwise fairly healthy and a matched donor is available. That's a potential cure but again with risks.

There are other drugs for MDS, particularly Vidaza (azacitidine) and Revlimid (lenalidomide). Revlimid is especially effective for patients who have the "5q deletion" (also called "5q minus") abnormality in their chromosomes.

[anandhi]

Neil Cuadra,

thank you so much for your immediate response and informations on Dacogen.

regards,
anandhi

[Mike Conlon]

I have just finished three years treatment with Dacogen(110 days of treatment). I have been in remission for over one year. I started in May, 2007 and since November, 2007 my lab results have been consistently excellent. I will have another BMB in July and the results this time should be interesting. Good luck

[marieostrom]

I would like to hear more about 8 week cycle for Dacogen. I am on 4 week cycle and don't seem to recover between cycles. Doctor did give me a break this month to 6 weeks. So tired of being tired!

[Mike Conlon]

A week from tomorrow I start my fourth year on Dacogen. The first 7-8 months I was on a 4-5 week cycle. Then I responded to the treatment in Nov. '07. Then I went to a 6 week cycle and 1 1/2 years ago I was in total remission and then went to a 8-9 week cycle. I am always tired, this probably partially due to Dacogen and partially due to drugs taken for emotional issues. The main reason to stretch out the length of the cycle is because of response to the treatment which is expressed in your CBC. I think you need to get more information and then have a written list of questions for your doctor on your next visit.

[marieostrom]

Mike,
Thank you for yor reply. Our disease progrression seems very similar. I was diagnosed July 07 and started Dacogen Sept 07 for 12 cycles of evry 28 days. By Ja 08 I was in remission and had no treatments just monthly CBC follow ups. When my white count started falling last October doctor ordered another BMB which came back Dec 09 as 5-6% blasts. Doctor put me back on Dacogen same dosage same schedule. But it seems to be harder on me this time around. The white count dosen't recover between cycles as t did back in 07-08 and the fatigue is much worse. I finally begged off my last scheduled treatment and now at week 6 white count is at 2.8. I haven't been there in awhile.
Biopsy in May shows blasts down to 2-3% range so Dacogen is working again. I see my doctor next week and intend to ask her about the 6 to 8 week cycle. Bad news is that she is moving out of state in July so I have to start over with a new oncologist. Just hope I get someone I like as well as she has been very open to discussing treatment plans and options. Guess I should be happy to have come this far (3Years) with no major illiness only one hospitalization for infection of the pic line. Thanks again for your imput.

[crpa]

Hi Everyone:

I was wondering if anyone had any experience with other treatments for mds when the dacogen treatment fails.
My husband had to stop Dacogen and Vidaza treatments due to high liver function test results, the last one with Dacogen the liver tests went thru the roof.
We are now waiting to hear from Drs on next step.
Any ideas would be appreciated.
CRPA

[Birgitta-A]

Hi CRPA,
There is a kind of drugs that are called Histone Deacetylase inhibitors. Several of them are approved for other diseases like Epival (valproic acid) and Zolinza (vorinostat). Both have showed quite good results in MDS - one member of this forum had a very good response during many months when she was taking Epival.

In this study with Epival (valproic acid) they found a response rate of 42% in MDS with a normal blast count.
http://abstracts.hematologylibrary.o...act/106/11/789

In this study with Zolinza most patients had AML – 7 of 41 patients improved.
http://bloodjournal.hematologylibrar...act/111/3/1060

Both drugs are often combined with other drugs for better effect.
Kind regards
Birgitta-A

[Birgitta-A]

Hi all,
Here are the latest news from MD Anderson Cancer Center about treatment for MDS. Very interesting about oral Vidaza! http://www.mdanderson.org/publicatio...hrisk-mds.html
Kind regards
Birgitta-A

[crpa]

Thanks for all the great info and updates on lastest meds.
I will definitely looked them over.
We are still waiting to hear back on my husband's next step, his counts are
now stable, but waiting to hear if a sct is possible and when.
That I understand is a hard call, we have a great Dr. which is a bit of a comfort.
Good to read of some people progress with the transplants.
Enjoying the Sunshine now
Take Care
Christine