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MPN Voice

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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

•50 minutes ago

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Thanks for all the good wishes

Scaredy_cat

•3 hours 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

•4 hours ago

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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

•4 hours ago

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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

•13 hours ago

4 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

•17 hours ago

2 Replies

New to Rux

Hi everyone. Thank you all for all the useful replies I got to my last question. Two more queries here: I'm newly diagnosed with post-ET Myelofibrosis and I've...

Hi everyone. Thank you all for all the useful replies I got to my last question....

Sivasi

•18 hours ago

9 Replies

1 year post diagnosis

I am a 54 yo male living in Vegas, I found out I was Jak2 positive last year, looked at labs before doctor and freaked. I have been having slightly higher RBC...

I am a 54 yo male living in Vegas, I found out I was Jak2 positive last year, lo...

FINFAN1970

•18 hours ago

2 Replies

Pre-diagnosis advice - persistent mild thrombocytosis

Hello. I'm still waiting to see a haematologist but worried I have ET with no symptoms but a persistent mildly raised platelet count of around 460-480 over...

Hello. I'm still waiting to see a haematologist but worried I have ET with no s...

DS00

•20 hours ago

1 Reply

No results

Still no results yet. Rang hospital three times now and told will red flag it. Yesterday got through again and told no red flag. What's the point. The swelling...

Still no results yet. Rang hospital three times now and told will red flag it. Y...

mag123ben

•1 day ago

2 Replies

Platelets

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...

Thanks for all your support over the last weeks, My platelets had risen dramati...

EdwinaJ

•1 day ago

9 Replies

New member - Post ET MF (Australia)

I'm 42, married with six children, and I live in Australia. In 2013, I was diagnosed with CAL-R positive ET. I started taking aspirin and managed pretty well....

I'm 42, married with six children, and I live in Australia. In 2013, I was diagn...

Hatchie

•1 day ago

7 Replies

Newbie

Just saying hello. I’ve been lurking since testing Jak2 positive (blood test) a few weeks ago and grateful for the information I’ve found here. It’s all very...

Just saying hello. I’ve been lurking since testing Jak2 positive (blood test) a...

RoundTheWorld

•2 days ago

18 Replies

ET JAK2

Happy Wednesday everyone! I take hydroxyurea and just had labs with my primary doctor. Liver and pancreas enzymes were elevated. My first thought was could...

Happy Wednesday everyone! I take hydroxyurea and just had labs with my primary d...

Smoothie2020

•2 days ago

17 Replies

Stem cell transplant (SCT) 15 months on

I'm now 15 months after my SCT and in my my recent review my figures are improving:WBC 4.0 HB 139 Neut 2.3, lymph1.12 and platelets 106 ( highest for a couple...

I'm now 15 months after my SCT and in my my recent review my figures are improvi...

Scaredy_cat

•2 days ago

19 Replies

Shingles and Ruxolitinib

I note that on the Blood Cancer web site is states that Aciclovir is an anti-viral medication that prevents shingles, which can be a side effect of...

I note that on the Blood Cancer web site is states that Aciclovir is an anti-v...

nanmc

•3 days ago

28 Replies

Myelofibrosis

I have been taking Jakavi for three years after diagnosis of post-PV myelofibrosis. I get very breathless and can't walk far, but seem to cope reasonably with...

I have been taking Jakavi for three years after diagnosis of post-PV myelofibros...

lucieboo

•3 days ago

8 Replies

red light therapy

Hi I have been looking into the benefits of red light therapy for muscle issues and wondered if anyone had tried this - I can’t see any contradictions with...

Hi I have been looking into the benefits of red light therapy for muscle issue...

BeckyDing

•3 days ago

5 Replies

Medicare Part D options for Rux

Question for our US members: I'm in the thick of this transition to medicare and seeking the latest info from members who are on medicare and Rux. I'm in...

Question for our US members: I'm in the thick of this transition to medicare an...

EPguy

•3 days ago

40 Replies

sct update so far

I just wanted let you all know how iam getting on I have been in since the 29 and have been having chemo daily I have had no side effects so far my doctor said...

I just wanted let you all know how iam getting on I have been in since the 29 an...

Leighcox85

•3 days ago

17 Replies

Travel Insurance

Thanks to everyone for there support re insurance. I have used Staysure and everything is covered. I do appreciate this forum it is great source of...

Thanks to everyone for there support re insurance. I have used Staysure and eve...

Hannah2308

•4 days ago

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stem cell transplant survival with MF

This link gives some figures for overall survival with or without a transplant. The headline really is the initial mortality close to the transplant is only...

This link gives some figures for overall survival with or without a transplant. ...

Scaredy_cat

•5 days ago

5 Replies

Low Platelets Help

I’m taking 105mcg of Pegasys with 1500 mgs of Hydrea per week for PV. I’m concerned that my platelets are falling lower every month. I just dropped to Under...

I’m taking 105mcg of Pegasys with 1500 mgs of Hydrea per week for PV. I’m conce...

russkatt

•5 days ago

5 Replies

Rusfertide (for HCT Control)- FDA status

I came across this info today. Mar 28 2024: "Protagonist Therapeutics said it plans to seek FDA approval for rusfertide for treating polycythemia vera in late...

I came across this info today. Mar 28 2024: "Protagonist Therapeutics said it p...

EPguy

•5 days ago

10 Replies

supplements with essential thrombocyethemia

Hi I am back in hydroxi after suspected added issues to thyroid being on pegulated interferon for a number of years. Just wondered what supplementation...

Hi I am back in hydroxi after suspected added issues to thyroid being on pegul...

BeckyDing

•6 days ago

15 Replies

Switch from Besremi to Jakafi

I am a PV patient 57 years old diagnosed at age 50 and considered low risk. First five years after diagnosis I was treated with monthly phlebotomy and baby...

I am a PV patient 57 years old diagnosed at age 50 and considered low risk. ...

mfh7

•6 days ago

22 Replies

Dizzyness

Hi just wondered if anyone suffers when they have been busy or shopping come home sit down then stand up ,go very dizzy legs feel like jelly my ears block up...

Hi just wondered if anyone suffers when they have been busy or shopping come hom...

Lyla2018

•6 days ago

5 Replies

travel insurance

I am planning a four day holiday to Majorca from Scotland. I’ve been refused insurance because I’m on hydrocarbamide. Does anyone recommend Insurers who...

I am planning a four day holiday to Majorca from Scotland. I’ve been refused in...

Hannah2308

•6 days ago

13 Replies

Anyone turn down a stem cell transplant?

I have post ET MF. Currently I'm on Rux and getting monthly cycles of 5 aza. I don't need transfusions. Day to day I feel pretty good and can do most of what I...

I have post ET MF. Currently I'm on Rux and getting monthly cycles of 5 aza. I d...

LongETinUS

•6 days ago

10 Replies

potassium

Hi everyone I don’t post often but always read posts would like to ask your advice over the last few months my potassium has been high and have had a ECG...

Hi everyone I don’t post often but always read posts would like to ask your adv...

Poppy6060

•7 days ago

12 Replies

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Posts - MPN Voice | HealthUnlocked

MPN Voice

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.

New to Rux

1 year post diagnosis

Pre-diagnosis advice - persistent mild thrombocytosis

No results

Platelets

New member - Post ET MF (Australia)

Newbie

ET JAK2

Stem cell transplant (SCT) 15 months on

Shingles and Ruxolitinib

Myelofibrosis

red light therapy

Medicare Part D options for Rux

sct update so far

Travel Insurance

stem cell transplant survival with MF

Low Platelets Help

Rusfertide (for HCT Control)- FDA status

supplements with essential thrombocyethemia

Switch from Besremi to Jakafi

Dizzyness

travel insurance

Anyone turn down a stem cell transplant?

potassium

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