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MPN Voice
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A post-diagnosis reflection....

Hi everyone out there! And thank you for sharing all this info. It's been a lif...

Weight gain on Hydroxyurea

Has anyone else had weight gain while taking Hydroxyurea? I have been on it 10 ...

Does Stress cause these outbreaks

Hi my MPN family. Those of you who are familiar with my posts know that I have p...

Yesterdays Living with MPNs day

Just had to say a huge thank you to everyone involved in yesterdays MPN Patient...

Et symptoms

Hi all... I was diagnosed with ET Jac2 + in April this year.... I had a one mar...

Wonderful Living with MPN’s day

A huge Thank you to everyone who made the MPN Voice day possible yesterday. It w...

Earthquake on the way!

Encouraging video, discovering JAK2 was last big MPN earthquake and not a great ...

Living With MPNs Day - London

Saturday’s forum in London was very good and it will be well worth looking up a...

Dental crown

Hi there folks. My first post. All a bit scary isn’t it once you join but so nic...

Thank you to everyone who helped organise the MPN day in London today

Hi. I couldn’t get to the big meeting on London today, but I managed to pick up...

variation in JAK 2 platelet count

How much change from time to time (over 6-8 months ) can occur without being al...

Pre Ash summary from the Prof

https://www.vjhemonc.com/video/d5nz8j49lwe-mpns-looking-to-ash-2019/

No fear and so grateful for Mutation diagnoses

So for the past eight years since starting treatment for ET I was in chronic all...

Body symmetry

Hi . Im 18 years old male. I think that half of my body (bilaterally) has norma...

Hu journey

Well platelets have gone down ..by...4 so not much. At least they haven't gone ...

CBD Oil

Hello All Has anyone used or thought of using CBD oil please? If so what for? T...

Hello

Hello my name is Melanie ... I am new and was diagnosed with ET Jack 2 positive ...

Pegasys update

So after 8 weeks on 45 Mcg Pegasys my platelets are down to 420. Pre starting Pe...

Self monitoring / testing of HGB / HCT ?

Does anyone here use any sort of home testing devices to monitoring your own blo...

Researchers examine the metabolic effects of an oral blood cancer drug ~ RUXOLITINIB (Jakafi)

Post by MPN-MATE Admin » Wed Nov 13, 2019 11:14 am NOV. 12, 2019 Researchers ex...

Bruising

Had my monthly blood test at Drs. Don't usually bruise but today really bad brui...

Hypertension meds with Pv

Hi everyone, I was wondering if most people with PV also have high blood pressur...

Critical illness policy

Hello everyone. I have just received a letter confirming my critical illness pol...

Chronic would

Hi everyone, I do have a chronic would at my right leg at the ankle and it's not...

Saturday‘s Living With MPNs Day In London

This is a follow up to my post trying to hook people who are attending the above...

MPN Memoir...

Hello everyone, Having been diagnosed with ET at 26, I have finally published my...

ET JAK 2 positive

Hi there. I am 50 years old and was just diagnosed with ET JAK 2 positive. My he...

Kids flu sprays

Hi folks, can anyone remember how long you have to keep away from the kids when ...

Can I ask my hairdresser to dye my hair if I take Hydroxycarbamide? I have had Polycythaemia Vera for 2 years.

I’m not sure if it’s ok to get my hair dyed. Does anyone do this whilst taking H...

Et and heart palpitations

Does anyone with ET suffer from heart palpitations and missed heart beats? I've ...
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