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#1
Wed Sep 14, 2011, 04:34 PM
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Lab numbers better today
Today we had to go in just to get labs since his blood lines were all so low last week and he had to have the platelets and blood. But thank goodness, all of them were up a little - not great - but at least enough where he didn't have to have platelets or blood. So for this we are thankful.
Now we go back next week to have labs, then blood if needed, another bone marrow biopsy, and then start Cycle 2 of the Sapacitabine. We are so praying for good results.
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Linda, Al's wife, 75; dx MDS 5/2010; Vidaza 6/2010; ARRY614 & Sapacitabine clinical trials at Emory, no results, stopped 12/2011. Had BMB at NIH on 6/5/12, blasts 10-15% so he's not eligible for trial there. :eek Promacta trial, Tampa, blasts 25-30% 8/17/12 AML, trying Dacogen now and praying. 
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#2
Wed Sep 14, 2011, 05:40 PM
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Great News Linda!
Here's hoping the good trends continue!
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Cheri Age 54; dx Oct 2009 AML, induction chemo only;dx MDS July 2010,- PRBC transfusion dependent; Results BMB 8/4/11--- 6-8% blasts; Danazol 100 mg 3xday; quit Exjade/ GI distress; platelets holding 40's; Fluctuation in blasts in blood--Neupogen 3-4xweek; off Revlimid again! Procrit weekly
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#3
Wed Sep 14, 2011, 11:28 PM
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Thank You For The Posts
Greetings, Al's Wife -
We are considering a Sapacitabine trial and greatly appreciate the information you are providing. For us, participation would involve a 3-4 hour drive. How often are you having to visit the hospital/research facility? Thanks so much. Alice
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Alice, wife of John, diagnosed MDS RAEB-1 5/10. Tried Vidaza, ON 01910.Na (at NIH), & Vidaza + Revlimid with no effect. Progressed to RAEB-2. Supportive care only from 9/2011 until death 1/26/12.
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#5
Thu Sep 15, 2011, 03:47 PM
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Alice,
The first cycle of the trial we had to go once a week for a month. He took the pills for 7 days at home. Then we were supposed to skip two weeks, but we had to get the labs checked on the off weeks. We decided to go back to Emory for the labs as our regular oncologist does labs but not blood transfusions. So for us it meant going back to Emory the two off weeks also. On the second cycle, which we begin next Wednesday, we begin on Wednesday and don't have to come back for 28 days for the study itself. However, we will still have to get lab checks and blood in-between, if needed. If you have a place locally that you can get labs and blood, if needed, then you would just have to go every 28 days to get the clinical trial drug once you begin cycle 2. Hope this made sense. As you may have read, we were hoping to do the Promacta trial at NIH but when his blasts increased to 10%, it disqualified him. While I'm trying to be optimistic that the Sapacitabine will help him, I'm also constantly reading about other drugs and treatment options. Good luck and keep us posted.
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Linda, Al's wife, 75; dx MDS 5/2010; Vidaza 6/2010; ARRY614 & Sapacitabine clinical trials at Emory, no results, stopped 12/2011. Had BMB at NIH on 6/5/12, blasts 10-15% so he's not eligible for trial there. :eek Promacta trial, Tampa, blasts 25-30% 8/17/12 AML, trying Dacogen now and praying.
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#6
Fri Sep 16, 2011, 01:03 AM
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Trial Details
Thank you so much for the info. We still don't know if the Sapacitabine trial is right for us, but your description is very interesting. The Estybon trial at NIH (2 hours away) required 8 days inpatient out of every 14, so one visit a week sounds easy!
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Alice, wife of John, diagnosed MDS RAEB-1 5/10. Tried Vidaza, ON 01910.Na (at NIH), & Vidaza + Revlimid with no effect. Progressed to RAEB-2. Supportive care only from 9/2011 until death 1/26/12.
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