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MDS Myelodysplastic syndromes

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  #1  
Old Mon Jan 23, 2017, 04:19 PM
Mo Sh Mo Sh is offline
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intermittent vidaza / dacogen treatment

hello,
my mother is diagnosed with MDS RAEB-2 (excess blast of 11%) since march 2016.
her doctor recommended a 6 month treatment of VIDAZA.
she took her first two cycles then Vidaza isn't available anymore in our country ... so her doctor recommended a treatment of DACOGEN.
She took her first one after about 35 days instead of 21 ... then Dacogen also start to vanish from the market .. and doctor told us to take CYTRABINE as a template cure until we find dacogen again ... after about 50 days .. we found it and she took it.
Again it disappeared for two other months .. and we made another analysis and it shows an increase of blast (16%)
she took CYTRABINE again .. but this time it was to hard on her .. that her platlets don't want to get raised over 20 ... DOCTORS say it will take time but her marrow will work again.
and she took a lots platlets transfusion to survive this period .. and yet we hope for the best ..
MY QUESTION IS: if we are able to find dacogen again .. will it be useful?
or we should start travelling and search for vidaza or other treatment?

Thanks
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  #2  
Old Mon Jan 23, 2017, 07:56 PM
Neil Cuadra Neil Cuadra is offline
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Mo Sh,

The difficulties you have had with the drugs for your mother are very unfortunate.

We can assume that her doctor's recommendation to first try Vidaza was based on the evidence from research that shows that Vidaza (azacitidine) is the best choice treatment for many cases of high-risk MDS.

Dacogen (decitabine) works for some patients and is the alternative choice, also based on statistics from clinical trials and other research.

Cytarabine (ara-C) is more often used for other diseases or in transplant preparation, but the doctor had few choices when the other drugs became unavailable.

There is very little chance that any other patient has made exactly the same drug switches that your mother has made, giving doctors few if any statistics on which to base a recommendation. Doctors gain much of their knowledge from the experiences of previous patients in similar circumstances, studying results from when these drugs are used on specific schedules over many months. But there's probably nobody with circumstances just like your mother. I hope her doctor can help you determine whether she should return to Vidaza or Dacogen if she can get them. And if she can get one of them, I hope she can take it for the recommended length of time.
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Old Mon Jan 23, 2017, 11:53 PM
Mo Sh Mo Sh is offline
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Neil,

thanks for replying sir, but unfortunately We are running out of options, vidaza isn't available. Dacogen is here .. her doctors after this result recommended dacogen (another 6 cycles from the beginning again) but only i think because Vidaza isn't available.

Do you mean that vidaza will be more effective or it won't make any difference?
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  #4  
Old Tue Jan 24, 2017, 08:30 AM
Neil Cuadra Neil Cuadra is offline
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Quote:
Originally Posted by Mo Sh View Post
Do you mean that vidaza will be more effective or it won't make any difference?
Doctors can't know in advance which drug will be most effective because it varies from one patient to another. Statistics apply to groups of patients, not to individual patients, so they can guide a doctor's recommendation but they can't tell you for certain what to do. Research like this study have found that Vidaza is statistically more effective than Dacogen for older patients (age 65 or older), with less of a difference for younger patients. When neither is available or for more advanced cases of MDS, conventional chemotherapy is often recommended, but is usually more risky because of higher toxicity.

Vidaza and Dacogen are similar. Both are less intense than conventional chemotherapy. Statistics show that it can take 3 or 4 months (sometimes longer) for patients to respond to Dacogen. For Vidaza it's even longer, often 6 months or longer.
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  #5  
Old Tue Jan 24, 2017, 10:23 AM
Mo Sh Mo Sh is offline
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Thanks sir,
you are the best ... just wish us luck .. today she complete two weeks since the end of her five days dose of Cytarabine ... her platlets counts are extremely low ... she transfused about 60 units of platlets and yet .. today 's analysis gave us a result of 6000 platlets.
god help her ...
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  #6  
Old Tue Jan 24, 2017, 11:46 AM
Neil Cuadra Neil Cuadra is offline
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It's worrisome to see low blood counts time after time while you wait for a response to the drugs. I know from my own experience watching every lab report for my wife. It's very hard to be patient.

I'm sure that everybody here wishes you and your mother good luck.
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  #7  
Old Tue Jan 24, 2017, 08:02 PM
Care. Care. is offline
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Mo Sh,

Yes - please let us know how she does. My Dad has MDS RAEB-2, and the unconventional approach your mother is getting is interesting to me. Please keep us updated as she goes through her treatments.

All the best to your mother and you!

Care.
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Daughter of Jim, dx 11/15 MDS RAEB-1 low-risk (5% blasts). Vidaza started 12/15. BMB 4/16 5% blasts. BMB 9/16 RAEB-2 9% blasts, hi-risk. x-fusion dependent.
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  #8  
Old Wed Jan 25, 2017, 03:04 PM
Mo Sh Mo Sh is offline
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Care,

Today , it was 12000 after transfusion of 6 units ... We can't give her any cure (vidaza or dacogen) until her platlets count recover by its own.
I'm taking the opinion of three different doctors about the best treatment for the case after her recivery -we wish- and will tell you about any news.

I wish you and your dad the best of luck and a speedy recovery.

Neil ... thanks a lot ..
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