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#1
Tue Aug 23, 2011, 08:47 PM
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Starting Sapacitabine tomorrow
Well, we are starting Sapacitabine at Emory tomorrow. Since this is a Phase II, things go quite a bit differently than the Phase I Arry-614, my husband was in earlier this year. The doctor said that he would have the up and down cycle (my terminology) like he did when he was on Vidaza, where his numbers would go down and he would be very tired, but then, hopefully, go back up again.
Today his platelets were at 29, which I rejoiced in, since they were at 22 last week. I never thought I'd be happy to see 29, but with this disease, we'll take whatever we can get! The RBC's are at 10.6 and the WBC's are still in normal range. We are just so thankful that we are able to do this here near home and did not have to do the trial in Houston. Eventually, if this doesn't work, then we may not have any choice; but for right now, this is where we want to be. I'm not sure why MDAA did not tell us that this trial was being offered here at Emory near where we live. But they have been very nice in forwarding the reports so that my husband did not have to repeat the bone marrow and other tests. So I'm praying hard and hoping that this clinical trial will help my husband. He turned 74 today and to look at him, you wouldn't know anything was wrong. He's very active and loves to work in his shop on his old cars, so it's going to be hard when he's tired and feeling bad to watch him (at least that is how it was when he was on the Vidaza for 6 months) not being able to do the things he loves. I just admire all of you with this disease and pray for a cure soon. Thanks to all for your kind words and support. Linda
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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
Tue Aug 23, 2011, 10:21 PM
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Hey Linda and Al,
We understand rejoicing at 29,000 - and Al's RBC is good and his whites are wonderful!! God is looking out for you both - finding a trial close to home. Keep the faith!! We'll be thinking of you. Please keep us posted. God Bless, Sally - wife of Don - MDS
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#3
Wed Aug 24, 2011, 07:10 AM
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Sapacitabine
Hi Linda,
Hope Al will have a good response! Kind regards Birgitta-A
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#4
Wed Aug 24, 2011, 10:07 AM
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Hey Linda
Hope all goes well and Al feels good throughout the trial! So happy to hear it's close by...what a difference it makes being near home.... Wishing you a good response and great numbers! Cheri
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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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#5
Wed Aug 24, 2011, 12:33 PM
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I'm grateful to Al and other participants in clinical trials. He's willing to put up with discomfort in hopes that it will work for him and others. Hopefully the treatment will cause minimal side effects!
Sue
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Sue, age 72; Dx 6/2010 MDS Int-2. Revlimid unsuccessful, began Aranesp 10/2010; additionally Dx PNH 2/2011, Soliris added 3/2011. ATG 5/2011, Cyclosporine 5/2011. Nplate 10/2011 to 10/2012 . Exjade began 12/2013 due to high ferritin level, discontinued 3/2014 because of increase in creatinine.
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#6
Wed Aug 24, 2011, 02:54 PM
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best of luck to al and to you. as somebody whose platelets hang out in the 20 to 30 range, it is very easy to understand the joy of a 29.
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MDS RCMD w/grade 2-3 fibrosis. Allo-MUD Feb 26, 2014. Relapsed August 2014. Free and clear of MDS since November 2014 after treatment with Vidaza and Rituxan. Experiencing autoimmune attack on CNS thought to be GVHD, some gut, skin and ocular cGVHD. Neuropathy over 80% of body.
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#7
Wed Sep 7, 2011, 12:05 AM
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Hello
Hi Linda and Al,
I have followed your posts from the other replies you have posted and wanted to stop by and pass on best of the best to Al. How is he progressing, please keep us posted, our prayers and wishes are with you and your family. Blessings
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