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AA Aplastic anemia

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  #1  
Old Wed Jul 25, 2018, 07:48 AM
ASQ ASQ is offline
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Seven weeks post ATG treatment .

Hi All
My wife is seven weeks post treatment for SAA/ hMDS . She has been on weekly red cell and platelet transfusions since end of treatment . After her last platelet transfusion her count was 42 and now a week later it has gone up to 61 . I just wondered if this is a sign of responding to treatment or a blip . No doubt we will see what next week's CBC has to show . But my curiosity got the better of me .
Regards ASQ
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  #2  
Old Wed Jul 25, 2018, 05:39 PM
Marlene Marlene is offline
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It's too hard to predict base on one CBC. Like you stated, you're just gonna have to wait for the next CBC. It's very frustrating... with this disease, there's a lot waiting involved. If the intervals between transfusions lengthen, that will be a good sign.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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  #3  
Old Thu Jul 26, 2018, 02:40 AM
Hopeful Hopeful is offline
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That's a very good sign to me - especially if no transfusion was responsible for that rise
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52 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. Tried slow cyclosporine taper over 4+ years. Platelets fell, so back on cyclosporine. Trisomy 6 clone in 5% of cells.
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  #4  
Old Thu Jul 26, 2018, 05:18 AM
ASQ ASQ is offline
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Marlene and Hopeful , thanks for your replies to my post.
It is encouraging that platelets have risen . But will have to wait a bit longer to see if it is maintained . My wife's heamatologist is very happy with the way things are progressing . It's all gone pretty well apart from a fungal infection that cleared up quickly . Hoping things are on the up .
Regards ASQ
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  #5  
Old Thu Jul 26, 2018, 10:15 AM
Diana H Diana H is offline
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Smile

Yes, I had similar experience. My heamatologist was happy that I don’t need RBC transfusion as often after 3cycles of Vidaza. I was skeptical at the time. Now I am in remission.
Fungal infection cleared is another very great sign.
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Female, age 66, dx MDS RAEB with 15-20% blasts 9/2017. Blood counts have normalized after 3 rounds of Vidaza. Finished six cycles of Vidaza. No treatment since March 10, 2018. Currently monthly CBC, will resume Vidaza when blood counts are low.
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  #6  
Old Thu Jul 26, 2018, 10:31 AM
ASQ ASQ is offline
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Glad to hear you are in remission , long may it continue .
Best wishes ASQ
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  #7  
Old Tue Jul 31, 2018, 10:50 AM
ASQ ASQ is offline
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Good news .

My wife has just had her weekly bloods and Consultant appointment . The good news is that the platelets have continued the upward trend and have reached 82 . The other blood lines have risen as well . The Consultant was pleased and thinks this is the beginning of an upward trend . Let's hope so . Still early days .
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  #8  
Old Tue Jul 31, 2018, 06:48 PM
Marlene Marlene is offline
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That's encouraging news. Hope it continues
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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  #9  
Old Wed Aug 1, 2018, 05:51 AM
ASQ ASQ is offline
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Thanks Marlene .
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  #10  
Old Sun Sep 9, 2018, 01:30 AM
JustinSF JustinSF is offline
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Follow Up

My wife is just a few weeks behind your wife’s ATG schedule. Interested to hear how she’s been doing in the weeks since your last post.

My wife’s anc is around 1.1-1.6 any given day of the week, weekly blood tx, and platelet tax every other day.
ATG end of July, CSA (150mg 2x a day), Eltrombopag 150mg/day.
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  #11  
Old Sun Sep 9, 2018, 01:36 PM
ASQ ASQ is offline
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Hi Justin,. My wife has responded well to IST . She had an early response and bloods have risen and stabilised .
Although still under range Hb 97platelets 1000 and neutrophils around 1-1.5 . She hasn't had a transfusion for a few weeks now . She feels well at present .
She was quite unwell before treatment when Hb was 72 and platelets were 5 and numbers were falling week on week . Post treatment had a few problems with antifungals making her poorly ( itraconazole ) but a change of meds sorted that . At present she is on 125 twice a day cyclosporine and that seems to keep her within therapeutic range . She still gets tired but considering what she has been through she feels very well .
However we have seen the head of her treatment team recently who advised that a SCT is needed as her SAA had progressed to hypoplastic MDS . We reasoned that transplant treatment wouldn't be suggested unless it was absolutely necessary . The consent forms are signed and the wheels are in motion . So a transplant will be carried out maybe around Christmas time . My wife just wants to get on with it now and all being well be cured of the hMDS/PNH and fibrosis .
So that's where we are up to . I hope you wife is improving and feeling as well as she can be. I wish you both well .
Regards ASQ
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