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Old Tue Jan 26, 2010, 08:22 PM
Marrowforums Marrowforums is offline
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Time Magazine on MDS, Vidaza, and Epigenetics

An article titled Why Your DNA Isn't Your Destiny, published in the January 18, 2010 issue of Time Magazine, discussed epigenetics, the field in which scientists study how and why parts of a genome are switched on and off, producing changes to gene behavior while the genes themselves remain intact.

The article by John Cloud reported that drugs to manipulate epigenetic marks in order to treat illness are being developed, and mentioned Vidaza (azacytidine) in particular:
In 2004 the Food and Drug Administration (FDA) approved an epigenetic drug for the first time. Azacitidine is used to treat patients with myelodysplastic syndromes (usually abbreviated, a bit oddly, to MDS), a group of rare and deadly blood malignancies. The drug uses epigenetic marks to dial down genes in blood precursor cells that have become overexpressed. According to Celgene Corp. - the Summit, N.J., company that makes azacitidine - people given a diagnosis of serious MDS live a median of two years on azacitidine; those taking conventional blood medications live just 15 months.
The bone marrow failure community welcomes public attention for MDS and its treatments, but the phrase "serious MDS" wasn't defined and the statistics may have been misleading to some readers.

A Letter to the Editor by Dr. Richard Stone and Dr. Mikkael Sekeres of the AA&MDSIF Medical Advisory Board was published in the February 1, 2010 issue of Time Magazine:
It is important to clarify for your readers that not all those who receive a diagnosis of myelodysplastic syndrome (MDS) will die within two years of getting it, regardless of whether they take "conventional blood medications" or azacitidine. Of the estimated 60,000 people living with MDS in the U.S., 75% have a lower-risk diagnosis, providing a much less ominous prognosis. Research indicates that lower-risk MDS patients under age 70 survive, on average, four to nine years after diagnosis, meaning that some MDS patients live much longer.
Marrowforums reminds patients that averages don't apply to individuals and that survival statistics are always based on data from prior years. Because medical research and practice continue to bring us new and improved treatments and treatment techniques, the survival statistics today are better than those from the past.
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Old Wed Jan 27, 2010, 09:36 PM
Gene_In_Va Gene_In_Va is offline
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Thumbs up Why Your DNA Isn't Your Destiny - comment

This was a very time-ly article (pun intended) for me. I just happened to notice a double helix on the cover of Time this week while waiting to see one of my Doctors. I must admit I was surprised to see the reference to MDS in the article and the reference to the PBS show NOVA as well.

I don't know if the NOVA broadcast has aired yet or not. This field of Epigenome study is very exciting and has a major impact on thos of us with MDS and similar blood/marrow based cancers.

More public exposure to our disease can only help in our efforts to raise the awareness of our Legislators and hopefully engender more funding for researching drugs such as Vidaza and Dacogen.
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Old Wed Jan 27, 2010, 11:59 PM
Hopeful Hopeful is offline
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I saw that NOVA broadcast a few months ago. It was really interesting. They did have a segment with a MDS patient. NOVA shows tend to repeat, so stay tuned!
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53 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. small trisomy 6 clone, low-dose cyclosporine dependent
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Old Thu Jan 28, 2010, 01:44 PM
tytd tytd is offline
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epigenetics

The Nova program was titled " The Ghost in your genes" and aired in 2007 but has been repeated several times since then. It had a very short segment about an MDS pt receiving one of the hypomethylating agents. It does help you understand a bit how Vidaza or Dacogen work.
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possible low to int-1 MDS with predominant thrombocytopenia, mild anemia, dx 7/08, in watch and wait mode
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Old Mon Apr 5, 2010, 11:35 AM
Birgitta-A Birgitta-A is offline
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Vidaza and Dacogen

Hi tytd,
You know no one knows exactely how Vidaza (azacitidine) or Dacogen (decitabine) work but here is a report about some of the effects. The report is very complicated but at least we can try to understand something about these two drugs. Then we have other epigenic drugs like the histone deacetylase inhibitors (Epival and Zolinza).
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2814859/

Vidaza is incoperated in both DNA and RNA while Dacogen is incorporated solely into DNA. In MDS DNA can be hypermethylated and important tumor supressing genes can be silenced. That is why hypomethylating drugs can have positive effect in MDS (and a lot of other cancers too).
Kind regards
Birgitta-A
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Old Sat Apr 17, 2010, 02:30 PM
tytd tytd is offline
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AZA

Hello Birgitta,
Thanks for the article though it's a bit too technical for me. I wished I'd learned more genetics. I was sorry to see that your platelets had dropped, perhaps they will rebound. I am still hanging in with a count of 20k. Have you considered using Nplate in the future if you can't get Promacta? (since you don't have any blasts). Thanks for all your informative posts. tytd
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possible low to int-1 MDS with predominant thrombocytopenia, mild anemia, dx 7/08, in watch and wait mode
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Old Sun Apr 18, 2010, 05:03 AM
Birgitta-A Birgitta-A is offline
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Low platelets

Hi tydt,
You know for the moment I am satisfied with Cyklokapron 1 g x 3 while I am waiting for an answer about Promacta - I am still afraid of Nplate though I have read several positive reports about Nplate alone, Nplate + Vidaza, Nplate + Dacogen and Nplate + Revlimid.

Good that you manage with a count of 20!
Kind regards
Birgitta-A
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