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MDS Myelodysplastic syndromes

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Old Mon Jan 23, 2012, 10:34 AM
Sally C Sally C is offline
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Location: Chesterfield, Va.
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Possible change in sequence during BMB

My husband and I just came back from NIH last week. He had a scheduled bone marrow biopsy as part of the MDS/Promacta protocol.
A British doctor with ties to Johns Hopkins did the biopsy. He started by first taking the bone sample before he aspirated the marrow. This caused quite a stir with the staff in the room as they always aspirate first. He explained that it was a bit controversial (I really don't understand why other than it's just the way it's always been done) but he believed in another year this would be the standard way of doing biopsies. The reasoning behind this is the thought that aspirating first could result in emptying the marrow of cells and therefore getting a false hypocellular reading.
As an aside - Don had been transfusion dependent since 1/09 for red cells and platelets - approximately 60 transfusions in '09 and 60 in '10. He has only needed one red cell transfusion since spring of 2011, which was in Oct. His red cells reached 11 at one point but he is firmly staying in the 10+ range. His platelets are hanging in the high 40,000's to low 50,000's which is quite a record for him. We don't have the results of the biopsy yet but the NIH doctors aren't expecting any surprises due to the marked improvement in his counts. He has tolerated the daily 150mg. Promacta very well which he started taking in March, 2011.
God Bless,
Sally - wife of Don - MDS Int. 1
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Old Mon Jan 23, 2012, 12:31 PM
Al's Wife Al's Wife is offline
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Sally,

Sounds like Don is doing great and it's great to hear. On Al's last BMB they used the new drill at Emory and it went much faster. Of course he insists on being sedated, so he couldn't tell the difference. I would think that aspirating after the bone sample is extracted would be much less painful for those not being sedated.
We are currently in a watch and wait mode and really enjoying the break from treatment. Now if Al's numbers will just hold for a while. We go back on February 6th. His platelets were at 35,000 last month. He's had three different treatments (two of which were clinical trials) and none of them worked, plus he felt really bad a lot of the time. Now he's enjoying life and staying busy and not having to go in for labs every week really helps us to focus our lives on more pleasant things.
Of course we know there will be decisions to be made down the road and hopefully we'll be prepared to tackle other treatments. Like everyone else, we keep hoping for our miracle.
God bless you and Don.
__________________
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 Mon Jan 23, 2012, 01:06 PM
Sally C Sally C is offline
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Hey Linda,
This was Don's first sedated BMB and it is definitely the way to go. I was surprised to see on other threads that sometimes there is no anesthesiologist in attendance. He very closely monitored Don during the procedure.
Also I saw the link that Greg provided regarding the drill. I would think that is the way of the future as well. Easier on the patient and the doctor for sure. And I would think more efficient as well.
We are in the same mode as you and Al. For the first time since 12/08 we are able to think of taking trips and life isn't revolving around doctor appts. and transfusions.
As we all know, these treatments aren't cures - just improvements in quality of life. But we'll take what we can get for as long as we can get it.
Thank you for your kind words.
God Bless you and Al as well,
Sally
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