MPN Voice

Sharing my good news

I feel the need to share my good news with everyone. I have been to the haematologist this morning and my platelets are now down to 288 (from 500). I have now been on the hydroxy for around two months and am delighted to say 'she' said that I can have a break from the hydroxy at week-ends. I feel good as well. I used to suffer from joint pains which have disappeared. I though this was attributed to ageing...but I'm beginning to wonder if it was connected to the ET diagnosis. A bit too early to say yet I suppose.

Hope everyone is wel

Mary

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Hi Mary,

Thats great news, always worth a shout out with good news :)

Re Joint pain, thats an interesting one, i have read that people with MPN's can suffer joint pain, and a couple of years before i was diagnosed i had problems with both my knees, on crutches for a while they were that bad.

Even when better i still had issues, and since i have been on Rux i have been so much better so it does make you wonder.

All the best

Paul

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Fantastic news so pleased for you

I love to hear good news 😃 X

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Good news. Hope things continue in that vein..

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Hi Mary that's great news. Can you plse tell me if your other blood counts remained normal? ! E.g.white and red cells. It's my main concern about this medication. Thanks Lyn

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Hi Lindiloo, no impact on white and red cells, all remaining in very healthy range.

Initially, haemagloben and haematocrit were slightly over normal and now in better range....so win win all round. Delighted that I can have a break from chemo drug at weekends considering I'll be on some form of chemo for the rest of my life.

Mary

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That's a great result you had Mary, , there's much initial concern about Hydrox but as I've bleated on I was taking it 9 yrs and am very grateful for that as during that time it controlled my counts fairly well with little side effect, maybe fatigue which was linked to my MF anyway. I think it's much under rated in our treatment options due to its 'chemo' label. But it more oft than not delivers and there are aspects of its impact that can't be easily measured ie stopping or reducing risk of blood clots.

Cheers Chris

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Yes Chris,

the chemo label does 'take the breath' a bit. The haematologist told me people took it for years not knowing it was a chemo drug - but now they have to tell patients? Well, I know it's early days - but I am more than happy taking hydroxy for my condition. Anything that reduces my risk of stroke/heart attacks has to be endorsed in my opinion. Good to know it worked for you for so many years as well.

Mary

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That's great news Mary, really pleased for you. Karen X

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Well done you. Mel x

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Great news, Mary

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Hi glad to hear your good news , may I say they've come down pretty quick took mine 18 months to reduce from 900 down to 400 now I still hope they deduce to 300 , so well done ,

May I ask how many you take

I'm on 4 X 1,000 & 3 x500 ,

Have been for 3 years now ,

Pam x

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Yes Pam, they do seem to have come down quickly. They were only 500 to begin with though. I was put on one hydroxy a day, and after two weeks the platelets had reduced to 436...four weeks later they're down to 288.!! With this result the hematologist says I can stop taking the hydroxy at weekends. However, I am well aware things may change in the future - but I'm making the most of it for now.

Is that 4 days a week you take 1000mg and three days 500mg ?

Mary

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Hi Mary , yes that's correct you calculated that well X

Your body obviously reacted well to the HU , are you on any other meds ,

I'm on Clopidogrel & simvistatin

Just to keep my bloods sqeeky clean

As I had TIA due to blood being to thick,

Then diagnosed with ET Jak2 Pos

I've recently changed hospitals over the last month , not that the last hospital wasn't good , just reliesed there was a MPN specialist there ,it's no different in distance both on my doorstep (5 miles )

Hope I get down to not taking HU on weekend 🙏

Do you suffer any side affects,

Ok I Could babble on forever ,

From Pam Newcastle upon Tyne ,

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Just on aspirin daily with the hydroxy. No side effects at the moment Pam.

Sorry to hear about your Tia, that must have been a scary moment for you. It does make you realise what we're up against though. When you look back (before your diagnosis) was there any prior warning signs that anything was untoward?

Mary

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Hi Mary

Yes sure was a scary time thank for for my daughters quick action for a Ambulance

Who knows what would of happened ,

One of the obvious things was headache 's & very time I went abroad I got really bad legs on plane they used to stiffen up

( how lucky was I )

Apart from that fit & well .

Pam .

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Good to hear you're as well as can be expected now. I wonder how long you had ET for before your Tia event?

Have a good weekend

Mary

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Mary I was told that 5 years ago my platelet count was elevated before I had Hysterectomy, unbeknown to me until I had the Tia , WHY do they not act & investigate these things ,

By the way I have received a donation for my Justgiving is it from you !!!!

I asked my sister Mary ,I thought she'd gone mad as I already have a donation from her X

Love Pam xx

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Yes it's from me (the donation). Appalling what happened to you. Why did 'they' not question it at the time.....you just may not have had a Tia ??

Good Luck

Mary xx

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Thabks ever so much so kind of you X

Yes it should of been discussed

I think it was a kind of watch & wait ,

It could of been dangerous having the hysterectomy as our bloods don't clot

Neither wonder I lost a lot of blood and was on drip & oxygen !!!!!!

But thanks for you kind message , x

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