Fostamatinib trial for ITP

Raegan
How long were you on the NPlate for?
In my case I was initially allocated a limited dose of NPlate to hopefully increase my platelets so that I could safely have my spleen removed as my count was too low for the operation. My specialist however continued to push my case and then I was allocated a 24 dose supply (with a dose deemed to be 3 off 375mcg vials) and so in effect I had 72 of the 375mcg vials issued which were held at the hospital.
Depending on my dosage requirement I would often only use 1 vial every 2-3 weeks (I could just get a 4mcg/kg dose out of a 375mcg vial) and so the plan was to continue on the drug in the hope that the condition would eventually correct itself which it did after 5 months on NPlate.
I ended up only using half of my allocated NPlate and the unused vials were then returned to Amgen.
I had also had all those other treatments (other than the eltrombopag) that you had before I was started on NPlate - I am sorry that it did not work for you but maybe as Ann said you needed more time on it.
I was of the understanding that in Australia under the PBS you were entitled to NPlate if you had had your spleen removed (which I think you indicated that you had) and so I would have thought that you could have continued on it unless you were totally unresponsive.
Robert

Platelet count 37 today, beginning to lose faith in fostamatinib

What target count would you like to shoot for? I have no idea where counts should be with this drug.

Have to be stable at 50 otherwise will be deemed to be none responsive and taken off trial. Won't surprise everything tried so far has failed

Seems like you aren't getting to a point of stability. How long have you been on it? I'm wondering how the others in the trial are doing.

12 weeks on phase 2 double blind, randomised, control trial which didn't work.

Then on to open label trial and will reach week 12 on 10th August. I think I will be taken off it then. The only thing that has held them up so far is high doses of Prednisolone and I'm NOT going there again.

Will talk to my consultant re alternatives, however as I suspect that as I have to have some surgery in the fairly near future with a count of 50 for at least 10 days it will be IVIg initially and then see what happens.

Hi Robert, I was only on N-Plate for around 16 weeks all up. I can't remember the measurments now, but started off on the lowest dose building up to the highest dose which is where I had the best response. Yes I have had spleen reomved but still requrired special permission. I will definitely follow up on this and about needing to be on it for longer. The Fostmatinib trial is still not managing to get off the ground and so am starting to wonder if it is time to move on so following up with these q's around NPlate might be a good start. Thanks. Glad to hear you are going well now. Just out of interest which hospital were you a patient of? I'm at Westmead.
thanks
Raegan

Raegan,
I was at the Royal North Shore Hospital.
It might be worth starting up your own topic so we can follow your story and so we don't interfere with mrsb04's thread regarding her Fostamatinib trial.
Robert

Platelets 20 today. Can't see me staying on the trial much longer

So what's next?

Not a clue Sandi but it won't be loss of my spleen

Mrs. B,

What have you tried so far? Prednisone, azathioprine, mycophenolate, and fostamatinib... right? You sure have a lot of options left. I agree with Sandi that TPOs should be tried earlier than other treatments, as it has the best chance of success and offers the possibility of remission. Will they allow it, based on what you have tried so far?

Thank you for participating in the fostamatinib trial. I remember you saying that part of your motivation for participating was for the betterment of everyone with ITP. I am sorry that it was unsuccessful for you, but still you provided valuable data. You deserve a long remission from whatever treatment you try next!

Rob 16

Thank you for your kind words. I have failed to meet the criteria for the trial so strongly suspect I'll be off it on 10th August when the 12 weeks is up.

TPO's have been mentioned previously by 2 consultant haematologists but not sure if I will meet the NICE* guidelines, which are ambiguous to say the least.

* Not sure if you will be able to access the NICE site in the US

www.nice.org.uk/search?q=ITP

Anne

So sorry, Mrs B, to hear how this has been. It looked so hopeful especially with your early counts. Not knowing which trial: placebo or not, and with the shifting counts that you had, made me think about how hard it is to do these trials.
It's people like you who put in the graft.
So a big thank you!
X

Platelets 49 today so am staying on trial for the time being as only 1 off the 50 target. Repeat bloods and clinic again in 4 weeks

That is excellent news!

Mrs B
That is the best news!
Hang in there platelets

TPOs, I saw a NICE review of how the anticipated take up had gone (Spring 2015). It exceeded their projection, so costs will be higher. I wonder what will happen, I can't find it again though I'm afraid.

Excellent MrsB - fingers crossed for you

Link to my new blog as no longer on trial

pdsa.org/forum-sp-534/17-new-forum-information/28869-life-after-fostamatinib-trial.html