Seven weeks post ATG treatment .

[ASQ]

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

[Marlene]

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.

[Hopeful]

That's a very good sign to me - especially if no transfusion was responsible for that rise

[ASQ]

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

[Diana H]

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.

[ASQ]

Glad to hear you are in remission , long may it continue .
Best wishes ASQ

[ASQ]

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 .

[Marlene]

That's encouraging news. Hope it continues

[ASQ]

Thanks Marlene .

[JustinSF]

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.

[ASQ]

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

[Dishavirk]

Originally Posted by JustinSF

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.

Hi

I had similar treatment started last year.
I m still on Eltrombopag after an year n ist

How is your wife doing?

[ASQ]

Hi Dishavik . My wife responded very well to the ATG/cyclosporine treatment , her blood lines picked up quickly and now with in normalish range . Her diagnosis changed from SAA to hMDS- U with PNH clone and fibrosis . She was told that she would have to have a SCT . She was given a date for later this month . However a recent BMB has shown that she is no longer aplastic , the dysplasia has all but gone and the PNH clone has shrunk . The transplant team are having a meeting next week to decide whether or not to go ahead with SCT or wait and see how things progress .
An excellent response to ATG /Cyclosporine treatment.
I hope things improve for you and wish you all the best
ASQ