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  #1  
Old Wed Aug 1, 2012, 06:48 PM
Al's Wife Al's Wife is offline
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Lab Visit today

Well, we made the decision to change our local treatment back to Emory and we went there today. It was a LONG day as the doctor was running quite a bit behind. But we got labs and waited to see the doctor - and waited and waited! However, it was worth the wait. And even though he said essentially what our other doctor's office had said, at least this time we got it straight from the doctor (instead of his nurse) and he explained the whys and what ifs. The platelets were 9,000 (up from 6,000 last week) and I thought this was a great sign. However, the doctor said any time they are under 10,000 that they really can't be measured accurately whether they are 1,000 or 9,000 - they are just under 10,000. BUT he said Al does not need to get platelets unless he is actively bleeding and as long as he stays on the Amicar (the medicine to help with clotting). After taking the Amicar over the weekend, the blood blisters in his mouth are almost completely healed.
He has agreed to monitor Al locally and send the labs down to Tampa. He and our doctor in Tampa know each other quite well, so I think that will make it easier to get cooperation between them.
So for now, we are feeling a little better about things, at least as far as the need for platelet transfusions.
We go to Moffitt in Tampa on Tuesday and will get labs and bone marrow biopsy on Wednesday. I'm just hoping the blast numbers haven't gone up.
Hope all of you are having a good week.
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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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Old Thu Aug 2, 2012, 04:30 AM
Birgitta-A Birgitta-A is offline
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Promacta

Hi Linda,
Good that the blood blisters in Al's mouth almost have healed! You know it can be Promacta working at the same time as Amicar. Hope all counts will go in the right direction - that is HGB, WBCs and platelets up and blast cells down.
Kind regards
Birgitta-A
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  #3  
Old Thu Aug 2, 2012, 06:35 AM
PattiDean PattiDean is offline
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Hello Linda,

It has been a difficult time for you and Al, so it is nice to know that your visit with Emory, though long, was promising. It sounds like you and Al are now with doctors that will work together with the team in Moffitt.

I will be thinking of you both when you are in Moffitt next week. I know you must be anxious about the BMB, you are in our prayers.

God Bless,

I hope you can feel the hug I am sending to you.

Patti
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Dean,age 76, dx MDS, RAEB-2, 17% blasts, June 2012 - May 2013 - Dacogen with Neupogen and transfusions as needed. End of May 2013 Dacogen stopped working. BMB July 2013 shows RAEB-2 and severe Myelofibrosis. Passed away September 30, 2013
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  #4  
Old Thu Aug 2, 2012, 08:26 AM
Sally C Sally C is offline
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Hey Linda,
That is great news about the attitude of your doctor at Emory and his relationship with Moffitt - and also Al's mouth healing. Maybe now you can just concentrate on Al getting better. Let's hope Birgitta is right about the Promacta starting to work!
Sending prayers and well wishes your way.
God Bless,
Sally
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  #5  
Old Fri Aug 3, 2012, 01:34 AM
milliken2 milliken2 is offline
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Happy For You

Linda;
I am so happy for you and Al. I hope things continue to go well for you.

Beth
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Beth - R.N., B.S.N and wife of recently diagnosed husband who has been classified at stage 4 MDS. and I can't help the one I love the most.
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  #6  
Old Wed Aug 8, 2012, 11:58 PM
maria&lola maria&lola is offline
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Hi, Linda: Sending positive thoughts your way. Were you seeing someone else locally before going back to Emory? I'm in the Atlanta area so just curious.
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Old Thu Aug 9, 2012, 04:45 PM
Al's Wife Al's Wife is offline
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Yes, we were seeing our regular oncologist who originally diagnosed Al's MDS. We went to Emory for a second opinion and have been following up with both for the last two years plus. But we have pretty much decided now to switch exclusively to Emory for our local blood work. That way if we need blood, we will already be there. Plus the doctor we are seeing at Moffitt and the doctor we see at Emory are close colleagues, which is good.
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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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