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Old Tue Nov 10, 2009, 02:40 PM
Birgitta-A Birgitta-A is offline
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Thumbs up Abstracts from the American Society of Hematology

Hi all,
Now the abstracts from the ASH 2009 Conference are available: http://ash.confex.com/ash/2009/webprogram/start.html

Since we get 324 matches when we look for myelodysplastic syndromes it will take a few days to see if there are any important news. I didn't find a report about Entinostat for MDS patients but there are many other reports from drug trials. Good that so many reseachers are studing MDS !
Kind regards
Birgitta-A
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Old Tue Nov 10, 2009, 07:29 PM
edo288 edo288 is offline
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Breaking News!

Hi birgitta:

I can always count on you to direct us to the breaking news. You must spend a great deal of time staying current.

Thanks again,
__________________
Ed Campbell 70 RCMD w/ 9q- dx Aug 08 My website about MDS
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Old Wed Nov 11, 2009, 07:02 AM
Birgitta-A Birgitta-A is offline
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Analyse of Dacogen/Epival responders/nonresponders

Hi Ed,
You know I spend at least 2 hours every day at my pc looking at posts from 5 support groups, about 20 Google alerts (drugs) and about 20 drug companies. Then about once in a week I look at PubMed and clin trials gov. Once a year I follow the 4 most important conferences. I use the same type of coping as you do – it is important to be informed about our disease.

Today I found an interesting abstract from MD Anderson Cancer Center about response in patients treated with Dacogen (decitabine) with and without Epival (valproic acid) where the researchers could see already at day 5 which patients that were responders.

They looked at hypomethylation of miR124a1 (one of the MicroRNAs – small RNA molecyles regulating which genes are expressed) and hypomethylation correlated with response.

This type of info is very important for us because today many patients are treated with drugs without response for many months and we know that only about 50% of the patients will respond.
Kind regards
Birgitta-A
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Old Wed Nov 11, 2009, 01:11 PM
helen c. helen c. is offline
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my husbands mds

i follow everything u find out brigetta can u give me an honest opinion on my husbands prognosis he is 68 was dx jan 08. he is mds raeb2 with an ipss score of 2 he is completely transfusion dependant he gets 2 units of red blood cells every week and 2 units of platelets every 2 weeks he gets desferol with every transfusion and is on x-jade pills everyday he has vidaza every 28 days and neupogen shots the following 6 days. also arensep shot twice weekly. he also has chromosone problems which i do not understand but i know it involves 21 8 and 3 i think. i asked why was she still giving the vidaza because i dont think its working she said its keeping the chromosones from getting worse. the last bmb showed 10 to 12 % blasts. helen
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Old Thu Nov 12, 2009, 05:51 AM
Birgitta-A Birgitta-A is offline
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Vidaza

Hi Helen,
You know I think we should never try to guess anything about prognosis because we really don't know much about the prognosis for each patient.

One thing that we do know is that if Vidaza has not given positive results after six cycles the possibility for a positive result is low. How many cycles have your husband received? Did his counts get better or have they been low during the whole treatment?

If he did respond I think it is correct to continue the Vidaza treatment but if he never responded I think you should ask for some other treatment.

Your husband have very good supportive treatment !

It is interesting that your husband is getting both Desferal and Exjade - it is very uncommon. I am going to ask my dr if I can take Desferal and Exjade alternating. I get Desferal in my port 4 days with transfusions and would like to start with Exjade one day after Desferal and stop Exjade 3 days before transfusion and Desferal. 1000 mg Exjade per day decreased my white blood cells but my transfusion interval increased from 3 to 6 weeks so I would like to try 250 mg initially.

Kind regards
Birgitta-A
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