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MPN Voice

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SCT update

I’m now on day +284 & so far seem to be progressing well. I know things may change, but hopefully I’ll continue to progress. I’m managing to walk most days,...

I’m now on day +284 & so far seem to be progressing well. I know things may chan...

SRH55

•4 hours ago

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SCT update

I’m now on day +284 & so far seem to be progressing well. I know things may change, but hopefully I’ll continue to progress. I’m managing to walk most days,...

I’m now on day +284 & so far seem to be progressing well. I know things may chan...

SRH55

•4 hours ago

2 Replies

”low risk” interferon trials

Hi all, just wondering if any folks who have been tagged “low risk” by your care team have tried interferon treatment. I’m a 36 y/o female with PV (60% jak2...

Hi all, just wondering if any folks who have been tagged “low risk” by your care...

TwinMom88

•8 hours ago

5 Replies

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just being nosy

Hi everybody I am just enquiring how often do you get to see your Haematology consultant regarding your MPN. When I lived on Teesside I had my bloods...

Hi everybody I am just enquiring how often do you get to see your Haematology ...

jillydabrat

•10 hours ago

8 Replies

whiplash pain and interferon

hi everyone I started interferon about 6 weeks ago and apart from a bit of nausea and the odd ache the day after seem ( fingers crossed) to be tolerating it...

hi everyone I started interferon about 6 weeks ago and apart from a bit of naus...

Loubprv

Volunteer•10 hours ago

6 Replies

Avoiding crowds - immunosuppressed

I was diagnosed with ET six months ago and am on aspirin and hydroxy with few side effects so, other than occasionally getting over tired, life as a retiree...

I was diagnosed with ET six months ago and am on aspirin and hydroxy with few si...

Ipadlin

•13 hours ago

12 Replies

INCB160058 - new selective JAK2i

Has anyone been following this drug from incyte? It was presented at last years ASH conference, and they’re already lining up a safety trial on healthy...

Has anyone been following this drug from incyte? It was presented at last years ...

Coffeeglass

•18 hours ago

2 Replies

Only Just Diagnosed

Hi, I have just received a diagnosis of MPN COLR positive. My haematologist has not put any further diagnosis e.g. ET, MF or PV My assumption is it is...

Hi, I have just received a diagnosis of MPN COLR positive. My haematologist h...

Old_Coger

•21 hours ago

7 Replies

Hydroxycarbanide

My husband takes 2 hydroxycarbanide Mon to Fri. We don’t need contraception. Just wondering do we still need to use condoms. What are the consequences if we...

My husband takes 2 hydroxycarbanide Mon to Fri. We don’t need contraception. Jus...

Collie123

•22 hours ago

2 Replies

Dexta still no results

My Dr secretary rang the hospital. They haven't got enough staff to read them. Even if my Dr. Rang for results they still would have to wait for someone who...

My Dr secretary rang the hospital. They haven't got enough staff to read them. E...

mag123ben

•1 day ago

2 Replies

Medical Cannabis?

Has anyone tried medical cannabis for pain relief? I have severe arthritis which limits my life quite a lot, my doctor won’t refer me for knee replacement...

Has anyone tried medical cannabis for pain relief? I have severe arthritis which...

lizzziep

•2 days ago

10 Replies

Listen to this about ET

https://youtu.be/g8qM3XsJBUU?si=Zcw_Mi8mUCS1s-TB copy and play it on you tube It’s about ET very very informative

https://youtu.be/g8qM3XsJBUU?si=Zcw_Mi8mUCS1s-TB copy and play it on you tube ...

SammieLou

•2 days ago

7 Replies

Interferon

I'm about to start interferon treatment for ET. I need to learn to inject myself. I'm a bit overwhelmed right now and concerned about side effects. Will I need...

I'm about to start interferon treatment for ET. I need to learn to inject myself...

Otis23

•2 days ago

22 Replies

If anyone is interested in this study . .

This was at the Haematology Conference last Friday, I thought this was an excellent study so posting here for anyone who hasn’t seen it

This was at the Haematology Conference last Friday, I thought this was an excell...

Melaniem59

•2 days ago

1 Reply

Jury Service

Has anyone been excused from jury service because of having an MPN?I've just received a letter and I honestly can't see how I can do this with the fatigue,...

Has anyone been excused from jury service because of having an MPN?I've just rec...

EGMumma

•2 days ago

27 Replies

Migraine aura and aspirin v clopidogrel

Hello again. Hope you all had a good weekend. I've enjoyed a complete break from migraine aura (visual, sometimes speech and short term memory, the headache...

Hello again. Hope you all had a good weekend. I've enjoyed a complete break fr...

RoundTheWorld

•2 days ago

18 Replies

Probiotics anyone?

I have been taking probiotics for the last 3.5 years and seriously I cannot see any benefit as a supplement to daily 500mg hydroxy. I still have a permanent...

I have been taking probiotics for the last 3.5 years and seriously I cannot see ...

Goosebumps52

•3 days ago

6 Replies

Jet2 Holidays Blood Cancer Form

Hi all in UK. Has anyone been asked to complete a form by Jet2 asking quite a lot of intrusive questions before showing them to fly? Including questions such...

Hi all in UK. Has anyone been asked to complete a form by Jet2 asking quite a l...

rachel2006

•3 days ago

21 Replies

Happy Mother’s Day

Happy Mother’s Day to all the Mother’s out there and to all of our Moms. Hope everyone has a blessed Sunday. Hoping for good news for all of us and our...

Happy Mother’s Day to all the Mother’s out there and to all of our Moms. Hope e...

KLCTJC

•3 days ago

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ischaemic heart disease with E/T

hi all I’m 68 male had splenectomy in 2014 started hydroxycarbamide in 2015 high risk E/T and PV I’m on lots medication and 1500 mg daily Hydroxycarbamide I...

hi all I’m 68 male had splenectomy in 2014 started hydroxycarbamide in 2015 high...

Phil1955

•3 days ago

12 Replies

Post SCT update

I'm now +58 days and 3 weeks out of hospital. So far (touch wood, fingers crossed) I'm not showing any signs of GVHD or other abnormal symptoms but I know this...

I'm now +58 days and 3 weeks out of hospital. So far (touch wood, fingers crosse...

Flyingsteamer

•4 days ago

20 Replies

hydroxy/ interferon treatment questions

Hello. I understand that as (currently) incurable disorders PV and ET require long term management via venesection, anti-platelet and cytoreductive drugs. Does...

Hello. I understand that as (currently) incurable disorders PV and ET require lo...

RoundTheWorld

•4 days ago

30 Replies

Modern vaccine

Hi I have always had the Pfizer vaccine. Only choice now is Moderna. Are we okay with that fellow MPNs?

Hi I have always had the Pfizer vaccine. Only choice now is Moderna. Are we okay...

Lynne-G

•4 days ago

14 Replies

Hello 💐 I m new here. My platelet count 1080 down from 1140 (3 month ago).

I am trying to find out as much as I can. Had to have a blood test in January due to 3 months of very heavy peri/post menopausal bleeding. My iron was low and...

I am trying to find out as much as I can. Had to have a blood test in January du...

Manaaki

•5 days ago

11 Replies

ET Increase in Platelets Linear or Random?

I've had ET since my early 30s and my platelets seem to be increasing by a set amount each year, I'm now in my 40s and platelets are at 900. It seems like I...

I've had ET since my early 30s and my platelets seem to be increasing by a set a...

Jpn4

•5 days ago

7 Replies

Thanks for all the good wishes

Scaredy_cat

•6 days ago

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Hydroxyurea and Anagrelide

Goid evening, I visited a local hematologist this week, not my MPN specialist, due to non coverage and he suggested trying combo of Hydroxyurea and...

Goid evening, I visited a local hematologist this week, not my MPN specialist, ...

mbr8076

•6 days ago

5 Replies

Muddled

Hi All - the brain is muddled and I can’t find what I’m looking for but remember seeing a discussion about taking Vit D3 while on Jakafi (rux) for my PV. Also...

Hi All - the brain is muddled and I can’t find what I’m looking for but remember...

Anouchka

•6 days ago

9 Replies

A weighty issue saga

Greetings all, Let me start by saying I have always (for the last 60 years) been conscious of my weight. Even at 72, I am still 'hard wired' into dieting....

Greetings all, Let me start by saying I have always (for the last 60 years) bee...

Goosebumps52

•6 days ago

9 Replies

Blowing everything out of proportion.

I was 44 years old when I was finally told I had scoliosis. It runs in the family.. I was always told by my Dr it was my fault, as my posture was not good. I...

I was 44 years old when I was finally told I had scoliosis. It runs in the famil...

mag123ben

•6 days ago

2 Replies

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Posts - MPN Voice | HealthUnlocked

MPN Voice

SCT update

SCT update

”low risk” interferon trials

just being nosy

whiplash pain and interferon

Avoiding crowds - immunosuppressed

INCB160058 - new selective JAK2i

Only Just Diagnosed

Hydroxycarbanide

Dexta still no results

Medical Cannabis?

Listen to this about ET

Interferon

If anyone is interested in this study . .

Jury Service

Migraine aura and aspirin v clopidogrel

Probiotics anyone?

Jet2 Holidays Blood Cancer Form

Happy Mother’s Day

ischaemic heart disease with E/T

Post SCT update

hydroxy/ interferon treatment questions

Modern vaccine

Hello 💐 I m new here. My platelet count 1080 down from 1140 (3 month ago).

ET Increase in Platelets Linear or Random?

Thanks for all the good wishes

Hydroxyurea and Anagrelide

Muddled

A weighty issue saga

Blowing everything out of proportion.

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