Platelets

[EdwinaJ]

Thanks for all your support over the last weeks, My platelets had risen dramatically and I was really quite worried. Saw my consultant on Tuesday and they had come down to 641 which was a huge relief. He did tell me that they were actually well over 1000 as they had clumped together and become very sticky.

So ... onwards and downwards for me now please.

Thanks again.

[Spanelmad]

That's great news ,have they increased your meds?

[EdwinaJ in reply to Spanelmad]

Hi. Thanks - I was so relieved. My medication has stayed the same and I go back in two months time. I take 1000/1500 HU on alternate days.

[Cja1956]

Great news!

[saltmarsh]

Congrats. Good luck going forward

[hunter5582]

The "extra-sticky" issue is common to MPNs with the JAk2 mutation. It is a bigger potential problem than how many platelets there are. Provided we stay symptom free, the exact number of platelets is less important when they are below 1 million. When the platelets get too high the risk of hemorrhage is more pronounced.

Onward and downwards for your platelets, Onwards and upwards for your quality of life.

[EdwinaJ in reply to hunter5582]

Thanks Hunter. I am triple negative and until this year have not really had any symptoms other than tiredness. I have a busy and active life and haven't done very much at all these last two months or so. It feels like I still have my va va but my voom has gone AWOL! The nicer weather here has just arrived so I'm looking forward to spending time outdoors [plenty of sunscreen!] over the coming months. I'm going back to see the consultant in two months so got everything crossed the numbers will be good.

[Oscarsboy in reply to hunter5582]

Hi Hunter. I hadn't realised the extra stickiness with platelets being Jak 2 myself. Am I right in thinking the aspirin helps with this?

[Lyndjs]

Thank you for sharing x Huge relief for you. Wow over a 1000, so good to know they've dropped.

Happy Friday 🌷

[J-fd in reply to Lyndjs]

I didn’t realise this either and I’m also Jak 2

[Sivasi]

Good news Edwina. I wish you well going forward.

[Jamesxyz]

How do they quantify the extra sticky, is it just visual under a microscope?

[EdwinaJ in reply to Jamesxyz]

I'm sorry I don't know the answer - I assume they can see it under a microscope

[hunter5582 in reply to Jamesxyz]

Here is a bit of information on this topic.

longdom.org/proceedings/sti...

ashpublications.org/blood/a...

[EdwinaJ in reply to hunter5582]

Thanks Hunter. Very much appreciated 😊

[Hannah2308]

That’s good, I’m pleased your platelets have come down, hope they stabilise x. Best wishes x

[Lasbrisas1]

Hi Edwina,Sprinkle Cayenne Pepper on all your food, its marvellous for downing those Platelets, i

[Lasbrisas1]

Sorry cut off, my fault lol....Mine were 765 now 242, in perfect range.

Good Luck,

Cherilyn.

[Mandz12]

Mine was over a 1000 now they are 550 doubled my medication and I requested to be seen at the hospital face to face as before it was all done over the phone. X