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I have finally started the drug trial

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I have finally started the drug trial 4 months 1 week ago #72667

  • CindyL
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Not much change in counts, yay!  Sorry about the bruise.  We get our flu shots next month.  I've only gotten a bruise from one shot.  No issues with Covid vaccines.

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I have finally started the drug trial 4 months 1 week ago #72668

  • MelA
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Ok, that's good - 10k is the same as the 11k so you stayed steady!!
Sorry about the bruise - I was surprised when I didn't get one after the flu vaccine, my arm wasn't even sore.   I'm still debating on the covid vaccine, whether to get it or wait to see what the human reactions are to it.  I've had 4 Pfizer shots so not sure I want to add Moderna into the mix.  I think the Pfizer one is approved here - probably ought to email my hematologist to see what he says.  My thing is neither one was tested on humans - but basic ingredients are the same as those in the original vaccines and those were tested safe.  
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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I have finally started the drug trial 4 months 3 days ago #72673

  • mrsb04
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Count is 14 today. 

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I have finally started the drug trial 4 months 3 days ago #72674

  • CindyL
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Yay!  Another increase! Is this an indication that the drug you're on is working?

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I have finally started the drug trial 4 months 2 days ago #72676

  • MelA
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You made me smile mrsb!
How long is this trial?
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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I have finally started the drug trial 4 months 2 days ago #72677

  • mrsb04
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It is 24 weeks long but in all honesty if my count does not start to climb significantly over the next 6 weeks I will be deemed as a failure and booted off 

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I have finally started the drug trial 4 months 2 days ago #72679

  • CindyL
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Aw, that sucks, mrsb!  Fingers crossed your counts start going up more!
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I have finally started the drug trial 3 months 3 weeks ago #72692

  • mrsb04
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Count today is 21

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I have finally started the drug trial 3 months 3 weeks ago #72693

  • MelA
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That is fantastic news mrsb!!!   You have made my day!!!   Fingers are crossed the rise continues so you can stay in the trial!!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
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I have finally started the drug trial 3 months 3 weeks ago #72694

  • delta809
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Hope your platelets continue to rise, MrsB!
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I have finally started the drug trial 3 months 3 weeks ago #72696

  • CindyL
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That is great to read, mrsb!  Hope they keep climbing to a safe level for you!
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I have finally started the drug trial 3 months 1 week ago #72711

  • mrsb04
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On  weekly blood tests my  last 3 counts were 21, 14 last week and 11 today. I started with a cold last Tuesday which lasted about 3 days, so I am not convinced a cold is to blame. 
I am to continue on trial and see consultant again in 4 weeks. If no great improvement I will probably come  off the trial. I am having to take anti emetics every day to suppress the nausea. 

We have today discussed future management. Fostamatinib was licensed over here 5 days ago.
When I was on the trail for it all those years ago (Feb to Sept 2015) I had to maintain a count above 50 which I failed to do. During the whole period I was on 5mg Pred a day as I am now. However with fortnightly bloods I only had 1 count under 20 and 10 above 30. I would be willing to go back on it and see what happens.

Avatrombopag is awaiting licensing, hopefully in the near future. I would also be prepared to give that a go but think I'd probably opt for Fostamatinib in the first instance. 

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I have finally started the drug trial 3 months 1 week ago #72712

  • CindyL
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Aw, mrsb, I'm sorry to read this.
Hopefully things will improve over the next 4 weeks.  Is it the trial drug that is making you nauseous?

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I have finally started the drug trial 3 months 1 week ago #72713

  • mrsb04
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Thank you Cindy, yes it is the trial drug causing the nausea. 

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I have finally started the drug trial 3 months 1 week ago #72714

  • CindyL
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Sorry you have to go through that, mrsb.
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I have finally started the drug trial 3 months 1 week ago #72715

  • MelA
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Are you sure that was a cold, it didn't last long [thankfully].   Oh mrsb I'm so sorry - I really hope when you see your consultant again in a month your count will have gone up.  That nausea though has to be exhausting and a real pain.  It does sound like you have plans just in case - and that is good.   Sending you good thoughts!   Hugs!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
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I have finally started the drug trial 3 months 1 week ago #72716

  • mrsb04
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Mel
It was definitely a common cold. 3-4 days is normal for me 

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I have finally started the drug trial 3 months 1 week ago #72717

  • MelA
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You are lucky to have colds that last 3-4 days!   Mine always went into a sinus infection - that is until I found out my D was very low and got that taken care of.  
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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I have finally started the drug trial 3 months 1 week ago #72718

  • mrsb04
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I've only had infected sinuses once. It was awful and lasted about a fortnight. 6 weeks later I was diagnosed with ITP.

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I have finally started the drug trial 3 months 6 days ago #72720

  • mrsb04
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Count is 13 today.  
Seeing consultant again in 3 weeks. I would be surprised if I stay on the trial as I will not meet the criteria  of a "sustained  increase in Platelet Counts (Efficacy Outcome Measure). Time Frame: 24 weeks, platelet counts ≥50,000/μL on at least 8 out of the last 12 weeks of the 24-week treatment period without the use of rescue medication". Today is week 14 and  the only count I have had above 50 ( week 4) in the whole 14 weeks is when I was taking a rescue of 20mg/day of Pred. Apart from that the  highest  count I have achieved is 21 which isn't even 20  above baseline count. 

Discussed Fostamatinib with consultant last week.  I failed that trial too as couldn't maintain a count >49 but did manage >30 for most of it so would be happy to take it again as it has finally been licensed over here. Plus I never has a single side effect from it. 

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I have finally started the drug trial 3 months 6 days ago #72722

  • MelA
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Well shoot mrsb!   Is it possible you have the placebo - or is this a trial where everyone gets the real thing?
Makes sense to try Fostamatinib again.
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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I have finally started the drug trial 3 months 5 days ago #72724

  • mrsb04
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Mel
Every one is getting the real thing 

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I have finally started the drug trial 3 months 5 days ago #72725

  • CindyL
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Aw, mrsb, that sucks!  I'm sorry you're going through that.  Fingers crossed that things start to improve soon.       
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I have finally started the drug trial 3 months 2 days ago #72728

  • MelA
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Well darn it mrsb!
I hope your count improves!!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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I have finally started the drug trial 2 months 4 weeks ago #72739

  • mrsb04
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Today is week 15 of 24; my count is 16. 

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I have finally started the drug trial 2 months 4 weeks ago #72740

  • CindyL
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Aw, mrsb, I'm so sorry you're going through this!
Is there anything else you can do?

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I have finally started the drug trial 2 months 4 weeks ago #72741

  • mrsb04
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No Cindy 
I will give it another couple of weeks and if no improvement come off it and try Fostamatinib again. 

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I have finally started the drug trial 2 months 4 weeks ago #72743

  • MelA
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I am so sorry mrsb - we all had such high hopes for you and this drug!!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
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I have finally started the drug trial 2 months 4 weeks ago #72744

  • CindyL
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Hopefully things will improve and you can stay on the trial.
Good that you have a back up plan.  I'd give you some of mine if we could share!
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I have finally started the drug trial 2 months 3 weeks ago #72751

  • mrsb04
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Can't see it happening Cindy. 

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