MPN Voice
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Should I start taking Hydroxycarbamide?

Hi - my first post on this excellent forum...

I have ET Jak2+ , diagnosed 6 years ago. On baby aspirin, platelets quite stable around 600. Approaching the big 60 though, so preparing for Hydroxycarbamide prescription. I am fortunate that my platelet count is stable, and I seem to be asymptomatic.

Has anyone declined taking Hydroxy at this stage, and adopted a 'wait and watch' policy on the platelet count? Or is it best to to follow the heamatologist's guidance and start taking the drug at 60, to reduce the platelet count now? I'm a bit concerned about side effects and 'dependancy'.

I tricky one I know!

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Hi,

I’m afraid it’s very much a personal choice.

Age 60 automatically puts you into the ‘high risk’ category. Although I believe in some countries it is 65. I was 60 when diagnosed and at that time I didn’t have a clue about the different risk groups.

The haematologist advised me to begin hydrea even though my platelets were only 500. She spoke about increased risk of heart attack/strokes and the potential disability that can arise from a stroke. That frightened me more than death as a potential! All the evidence suggests that the Jaj2+ mutation further increases this risk. So for me there was no question not to begin treatment.

Mary x

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Thank you Mary - I have a list of questions now!

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Hi

I am now 66years, was diagnosed at 63years. Here in NZ the age for HU is 65. but I like you are asymptomatic with platelets at low 600 and have been sitting there for a couple of years now. My Heam seems a little more happy now to watch and wait. I have to say so am I!! I do take baby aspirin which hopefully keep me clot free!!!

I have ET with CALR mutation.

Lyn

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Thanks Lyn

Interesting to hear about different approach in NZ. I'm going to ask my Heam about the 'watch and wait 'til 65' policy - will keep you posted!

Robert

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I didn't start until 66, was just on aspirin and watch and wait and had high platelets and white count. I was monitored with FBC every 2 weeks. Good luck! Frances.

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Thanks Frances

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Hi. There seem to be no hard and fast rules in this MPN business! Age 60 is just a guide. Everyone is unique - blood counts, general health and personal circumstances as well as age will all play a part in deciding on a treatment programme. The important thing is that you feel you can have an honest and open dialogue with your haematologist.

(And HU isn’t quite the great ogre as I have recently found out. There gets to be a point where no treatment is a far more scary prospect than treatment. And my counts have tumbled.) Good luck.

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Thank you Ebot

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Hi rdevans,

I am 68 and diagnosed a few months ago with ET Jak 2 +, seems though I have had this at least 6 yrs and probably longer. Take only aspirin at present but go back for BMB results this Friday. Heme said previously that he may not treat if platelets are below 500k, my last test showed 487k platelets. I never had any symptoms until after my first visit to the hematologist but since then and after reading everything I can about mpn's it seems that I have many of the typical symptoms, mental- who knows.

Wondering if anyone knows if HU has any affect on the progression of ET or PV or if it is only to treat symptoms and does not affect the long term progression of mpn's. It seems that my RBC indices are now high normal but 5 yrs ago were well within the normal range.

I think I would opt for the drugs if there is any proof that HU can slow the progression or in any way produce favorable results on the long term prognosis. I will probably just do whatever my hematologist recommends as I think he is a smart Dr.

Best of luck to you, please keep us informed.

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Thank you - sound advice!

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Hi I was diagnosed 4 weeks ago at 63 with E T been today, asked lots of questions, looks like I will have to take forever and aspirin, I hope the dose lowers on 500 mg presently

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Hi I was just diagnosed with ET4 weeks ago and my platelet count was 900 i have been today and it is 700, but told i will have to take the hydroxycarbamide always 😥

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