Posts - MPN Voice | HealthUnlocked

MPN Voice

10,722 members • 14,843 posts

All posts for September 2021

MPN Awareness Day, September 9, 2021 - A special story

(One day early :) Today is MPN Awareness Day. A time to spread awareness. Hope, inspiration and passion in living are just a few of our allies. In honor of our...

(One day early :) Today is MPN Awareness Day. A time to spread awareness. Hope, ...

PVReporter

•3 years ago

4 Replies

Covid-19

Hi, haven’t been on here for a while, too much going on, mum diagnosed with dementia, son was very ill with covid in hospital, so been an eventful few months....

Hi, haven’t been on here for a while, too much going on, mum diagnosed with deme...

Grumpyfairy

•3 years ago

11 Replies

ET Jak2 positive issue with red blood cells

Hello everyone I am looking for some advice I am experiencing some unpleasant affects and not getting any information or help from my haematologist. I was...

Hello everyone I am looking for some advice I am experiencing some unpleasant a...

YBSx

•3 years ago

19 Replies

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ET CANT WALK

Im having trouble walking my are so painful and very weak… who else experiencing this?

Im having trouble walking my are so painful and very weak… who else experiencing...

shiela23

•3 years ago

4 Replies

Learning to live with ET and PV in California

Diagnosed with ET in 2016 and PV a few years later. Recently started on Hydrea after platelet counts reached 1,000,000. Have been having phelbotomies for...

Diagnosed with ET in 2016 and PV a few years later. Recently started on Hydre...

K-itty

•3 years ago

19 Replies

IMPACT TESTING

Hi everyone, I've been scheduled to have Impact Testing (Integrated Mutation Profiling of Actionable Cancer Targets) where they sample blood and nail...

Hi everyone, I've been scheduled to have Impact Testing (Integrated Mutation P...

violetta115

•3 years ago

7 Replies

Stay in the moment

Dear Lulu Life is uncertain and we have learned that through Covid. No one knows the future with or without this disease. Take all your energy and put it into...

Dear Lulu Life is uncertain and we have learned that through Covid. No one knows...

Sunnylesser

•3 years ago

2 Replies

Pv or NOT PV ?

Hello Everybody. Sorry for my basic & bad english firstly. 5 years ago, I went to the doctor with a complaint of bruising on my nail and had a blood test. Then...

Hello Everybody. Sorry for my basic & bad english firstly. 5 years ago, I went t...

bbattuhann

•3 years ago

18 Replies

Novel Anti-Fibrotic Agent GB2064 in Myelofibrosis

« We are looking at alternative options in terms of targeting fibrosis. The next wave of clinical studies that we can anticipate [will include] an expansion of...

« We are looking at alternative options in terms of targeting fibrosis. The next...

Manouche

•3 years ago

7 Replies

“Third Primary Dose” verses “Booster Vaccine”

Yesterday, I posted that my hubby had been called for his Covid ‘Booster Vaccine,’ as the text he received clearly stated ‘Booster’. However, after reading the...

Yesterday, I posted that my hubby had been called for his Covid ‘Booster Vaccine...

mhos61

•3 years ago

15 Replies

ET and Hydrea issues along with covid shot.

I am a 65 year old male and was diagnosed with ET at 50. Up until know I have been only taking a baby aspirin but my platelets won’t from 400 to 700 over the...

I am a 65 year old male and was diagnosed with ET at 50. Up until know I have b...

MDI55

•3 years ago

14 Replies

Living with uncertainty and sense of hopelessness

Hi All I'm sorry, this isn't going to be a very upbeat post, so if you're having a bad day, please move on! I have MF, diagnosed earlier this year and at my...

Hi All I'm sorry, this isn't going to be a very upbeat post, so if you're having...

LuluCosson

•3 years ago

43 Replies

MPN PV experience with hydra

Hello all, I wanted to know from the PV MPNers , how is their experience with hydra , counts keep continue dropping with same dose or it gets stabilized for a...

Hello all, I wanted to know from the PV MPNers , how is their experience with hy...

neela2020

•3 years ago

6 Replies

Referral

Dr agreed to write to Dr Harrison to review my case. If no response he suggests I see her privately !!!

Dr agreed to write to Dr Harrison to review my case. If no response he suggests ...

ciye

•3 years ago

4 Replies

PV, phlebotomy ? Bad veins

Hi all, I am 71 ET to PV in 3 years now on HU 1000mg per day for 7 wks. WBC and platelets dropped dramatically, platelets from 620 to 170. Very little...

Hi all, I am 71 ET to PV in 3 years now on HU 1000mg per day for 7 wks. WBC an...

Meatloaf9

•3 years ago

12 Replies

Hi!

Hi Guys My apologies for not being around for a while. I was struggling with fatigue but that has improved with iron tablets. However, not sure if that’s...

Hi Guys My apologies for not being around for a while. I was struggling with fa...

Aime

•3 years ago

40 Replies

Booster Vaccine

It’s brilliant to hear that people are being called for booster Covid shots. Can I ask if people are being called by doctors surgeries or directly from the...

It’s brilliant to hear that people are being called for booster Covid shots. Ca...

Ozziepig

•3 years ago

7 Replies

Dual Vaccine Trial in Myeloproliferative Neoplasms

Brief Summary: A phase I-II study in patients with mutated MPN by vaccinating with PD-L1 and Aginase1 peptides with Montanide ISA-51 as adjuvant, to monitor...

Brief Summary: A phase I-II study in patients with mutated MPN by vaccinating wi...

Manouche

•3 years ago

7 Replies

Booster Vaccine

For those of you who maybe wondering about the booster vaccine, my hubby has been called up for his next Tuesday. He was to get the flu vaccine too, but that...

For those of you who maybe wondering about the booster vaccine, my hubby has bee...

mhos61

•3 years ago

16 Replies

Cataracts.

I have ET, diagnosed 3years ago , on Hydrea and Aspirin. I have ocular pain and cataracts now diagnosed . Wondering if this is common in ET? Having cataract...

I have ET, diagnosed 3years ago , on Hydrea and Aspirin. I have ocular pain and ...

Sopretty

•3 years ago

12 Replies

Cardiac micro vascular dysfunction/Vasospasm

Does anyone with an MPN have a diagnosis of this? Soon after my ET diagnosis and starting HU 8 yrs ago I noticed shortness of breath with mild chest discomfort...

Does anyone with an MPN have a diagnosis of this? Soon after my ET diagnosis and...

Rem31

•3 years ago

14 Replies

Update on Shingles Vaccination in UK

An earlier post made me check NHS Scotland about the shingles vaccination as my husband (without an MPN) is nearly 71 and hadn't been offered it - apparently...

An earlier post made me check NHS Scotland about the shingles vaccination as my ...

DJK12

•3 years ago

11 Replies

Progression to aml

I’ve had pv for 12 years. 3 months ago it progressed to acute myeloid leukaemia with a statistical prognosis of 6 months. As I am 73, I decided not to have...

I’ve had pv for 12 years. 3 months ago it progressed to acute myeloid leukaemia...

FAR_2009

•3 years ago

66 Replies

Increased blood pressure.

Hi all, Im male 58, jak2 and Et, diagnosed about a year ago after a dvt. Currently on 500mg hydroxy for 5 days a week and 1000mg for 2, with daily aspirin....

Hi all, Im male 58, jak2 and Et, diagnosed about a year ago after a dvt. Curre...

Ettu

•3 years ago

3 Replies

Research

Hi Maz this piece of research looks like somthing l could contribute to, l just need to know when and what time considering the time difference. Thanks...

Hi Maz this piece of research looks like somthing l could contribute to, l ju...

Hidden

•3 years ago

2 Replies

It's not too late to fundraise for MPN Voice during September Blood Cancer Awareness Month

Take Part in the 30 Days Hath September Challenge raising Funds For MPN Voice September Blood Cancer Awareness Month is a well known and popular...

Take Part in the 30 Days Hath September Challenge raising Funds For MPN Voice Se...

Mazcd

Partner•3 years ago

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Clinical Trial PV

Hello all. Haven't posted here in a while. My background is 57, female, PV for about 8 years. Platelets were well over a million initially. Treating on Peg...

Hello all. Haven't posted here in a while. My background is 57, female, PV for a...

Miriammusic

•3 years ago

5 Replies

CBD Hemp oil - any opinion or experience?

Hello MPN friends Totally unrelated to my ET (Jak2) MPN condition I have a chronic debilitating painful heel/Achilles tendon/bursitis issue which is the...

Hello MPN friends Totally unrelated to my ET (Jak2) MPN condition I have a chro...

snowdrop488

•3 years ago

10 Replies

Pegasus interferon piles

I have been on Pegasys interferon for 9 weeks and I am increasingly being bothered by very painful piles I wondered if anyone else had experienced this problem...

I have been on Pegasys interferon for 9 weeks and I am increasingly being bother...

Hughley

•3 years ago

5 Replies

Third jab

Anyone know if people with MPN’s will get third covid vaccine.

HazeBlue

•3 years ago

16 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for September 2021

MPN Awareness Day, September 9, 2021 - A special story

Covid-19

ET Jak2 positive issue with red blood cells

ET CANT WALK

Learning to live with ET and PV in California

IMPACT TESTING

Stay in the moment

Pv or NOT PV ?

Novel Anti-Fibrotic Agent GB2064 in Myelofibrosis

“Third Primary Dose” verses “Booster Vaccine”

ET and Hydrea issues along with covid shot.

Living with uncertainty and sense of hopelessness

MPN PV experience with hydra

Referral

PV, phlebotomy ? Bad veins

Hi!

Booster Vaccine

Dual Vaccine Trial in Myeloproliferative Neoplasms

Booster Vaccine

Cataracts.

Cardiac micro vascular dysfunction/Vasospasm

Update on Shingles Vaccination in UK

Progression to aml

Increased blood pressure.

Research

It's not too late to fundraise for MPN Voice during September Blood Cancer Awareness Month

Clinical Trial PV

CBD Hemp oil - any opinion or experience?

Pegasus interferon piles

Third jab

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