Posts - MPN Voice | HealthUnlocked

MPN Voice

10,512 members • 14,508 posts

All posts for February 2021

I have bone biopsy tomorrow

My first initial hematogist thought I had PV, I sought a second opinion from more experienced cancer care hospital. i got a travelling hematologist who has...

My first initial hematogist thought I had PV, I sought a second opinion from mor...

Androg

•3 years ago

13 Replies

Inconclusive Jak-2 Results?

Hi there, I recently had some blood tests done and my Haemoglobin results came back as 198 (I'm a 40 yo female). After multiple tests (my dr didn't believe...

Hi there, I recently had some blood tests done and my Haemoglobin results came b...

mkentish

•3 years ago

16 Replies

Sheilding

Hi just seen on covid19 Google now that us sheilding going to last tell 31st of March hopefully will fly by which I think it will do fingers crossed Xx

Hi just seen on covid19 Google now that us sheilding going to last tell 31st of...

Jody00

•3 years ago

5 Replies

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Trial for ET

Recently found out that the hospital where I see an MPN specialist (Cleveland Clinic) currently has a clinical trial for ET patients using an oral drug called...

Recently found out that the hospital where I see an MPN specialist (Cleveland Cl...

Meatloaf9

•3 years ago

5 Replies

Shielding extended

Hi all. Just had the dreaded email to say shielding extended to the 31st of March. Partly relieved but desperate to visit family who don't live near. Take care...

Hi all. Just had the dreaded email to say shielding extended to the 31st of Marc...

poly2

•3 years ago

18 Replies

Dambusters

Hi everyone Just like to say Thankyou all again for the support and messages when I lost my mum to covid on New Year’s Day Also I’d like to share something we...

Hi everyone Just like to say Thankyou all again for the support and messages whe...

Pippa63

•3 years ago

14 Replies

Unable to use conditioner

This is an odd question. Since I've been on hydroxycarbamide, I can't use normal conditioner on my hair as no matter how long I rinse and rub my hair for it...

This is an odd question. Since I've been on hydroxycarbamide, I can't use normal...

netty64

•3 years ago

12 Replies

Artificial sweeteners/caffeine on anti-inflammatory diet?

Trying to start an anti-inflammatory diet and avoiding excess sugar. Wondering if anyone has any opinions on the use of artificial sweeteners, specifically...

Trying to start an anti-inflammatory diet and avoiding excess sugar. Wondering i...

cmc_ufl

•3 years ago

12 Replies

Does any else suffer from extreme tiredness with fuzzy head suddenly hitting them and has to go to bed and sleep?

I have ET and would like to know if anyone else gets this.

netty64

•3 years ago

22 Replies

Tiredness

Hi all I hope everyone is staying safe and well? Just a question that I hope you might be able to help me with I have ET and on interferon I have been...

Hi all I hope everyone is staying safe and well? Just a question that I hope y...

Gunner73

•3 years ago

17 Replies

Peg injections side effects?

Hi Ive recently started peg injections put on a low dose of 45ml, for those who are on peg how soon or late can the side effects be expected or are the...

Hi Ive recently started peg injections put on a low dose of 45ml, for those who...

Mustang50

•3 years ago

11 Replies

Bronchiectasis and MPN

I'm 35yrs old with Bronchiectasis and just diagnosed with MPN. I have an enlarged spleen and suffer from extreme fatigue. Currently awaiting more tests as my...

I'm 35yrs old with Bronchiectasis and just diagnosed with MPN. I have an enlarge...

Kriddle01

•3 years ago

12 Replies

Erythropoiesis

Recently found this great presentation that explains erythropoiesis. It provides a terrific base to better understand what is going on in our bodies with PV....

Recently found this great presentation that explains erythropoiesis. It provide...

hunter5582

•3 years ago

11 Replies

Safe to take vitamin D with hydroxycarbamide?

Does anyone know if it's okay to take vitamin D supplement with hydroxycarbamide? I also take perindopril, clopidogrel and an atorvastatin. Just interested in...

Does anyone know if it's okay to take vitamin D supplement with hydroxycarbamide...

carlyjo

•3 years ago

18 Replies

Mpn advocate

does anyone know how i can contact Sarah the mpn advocate? She spoke on most recent seminar

does anyone know how i can contact Sarah the mpn advocate? She spoke on most rec...

Irishgal12

•3 years ago

2 Replies

Blurred vision after a covid vaccine

A friend of my after a covid vaccine experience blurre vision for a few days. Does anyone have experience or has anyone come across in something like that?...

A friend of my after a covid vaccine experience blurre vision for a few days. Do...

krotsida

•3 years ago

3 Replies

Newly diagnosed ET Jak 2 pos.

Hello, I have been just diagnosed with ET, I have had a horrible few months preceding with ischeamic toes. After lots of tests and specialists, it was...

Hello, I have been just diagnosed with ET, I have had a horrible few months prec...

Cabert

•3 years ago

16 Replies

How come Valentines Day is ALWAYS aimed at the younger generation?

We all need someone to love [you could make a song out of that?] it's too commercial, what about the older person OR the older disabled person....

We all need someone to love [you could make a song out of that?] it's too commer...

Adlon57

•3 years ago

4 Replies

Polycythaemia ruby vera & covid vaccine

Hi I have Polycythaemia rubra Vera just on aspirin at the moment platelets around 1000 all the time. I have been told that I am class 6 for the vaccine so will...

Hi I have Polycythaemia rubra Vera just on aspirin at the moment platelets aroun...

Jrc2019

•3 years ago

20 Replies

Et and younger adults

hi i am still very worried about et diagnosed in younger people for example age 30. They say life expectancy is normal etc but this seems based on older...

hi i am still very worried about et diagnosed in younger people for example age ...

Irishgal12

•3 years ago

43 Replies

IS ANYONE GOING TO GET THE SHOT FOR COVID VIRUS ....THANKS

IS ANYONE GOING TO GET THE SHOT FOR COVID VIRUS ..... THANKS

111xxx888

•3 years ago

77 Replies

ET with CmPL anyone??

I have the above variation but cannot find anything about it. All is see is JAK2 and CALR. I can't be the only one on this forum, surely?? Any info would be...

I have the above variation but cannot find anything about it. All is see is JAK2...

Quercus53

•3 years ago

30 Replies

My recent appointment with MPN specialist and B12 deficiency

Hello everyone Just wanted to give you status after my first appointment with MPN specialist Most of the things been told, I already learned about through...

Hello everyone Just wanted to give you status after my first appointment with M...

PrinceA

•3 years ago

8 Replies

Pfizer Vaccine

Hello. I’ve not posted for a while and tend to just read others posts. I just wanted to say I had the Pfizer Vaccine yesterday afternoon (I live in North...

Hello. I’ve not posted for a while and tend to just read others posts. I just wa...

SusiePlums

•3 years ago

21 Replies

Interferon Injection

Hello. Over five weeks ago I have been placed on Interferon Alpha Injections. At this moment I am only taking half the dosage . Then I have to change the...

Hello. Over five weeks ago I have been placed on Interferon Alpha Injections. A...

vegas22

•3 years ago

5 Replies

ET treatment is cruel and illogical

Has anyone here bothered to question if taking chemotherapy for the rest of your life for an "uncurbable" disorder makes any sense? I am sure everyone else has...

Has anyone here bothered to question if taking chemotherapy for the rest of your...

Idontcare9123

•3 years ago

66 Replies

Thinking ahead

Just had appointment with consultant. I wanted to consider options of meds. ( JAK2pos) My platelets are remaining fluctuating between 750 and 900 over a...

Just had appointment with consultant. I wanted to consider options of meds. ( JA...

Mostew

•3 years ago

22 Replies

Vaccine

Hey, all! Just had my first vaccine yesterday. Just had a sore arm the first day. Feeling better now. Second one scheduled for March 1st. I’m in the states, so...

Hey, all! Just had my first vaccine yesterday. Just had a sore arm the first day...

Cja1956

•3 years ago

29 Replies

Insomnia and hydroxy

Hi doubles up on hydroxy six weeks ago and struggling to cope with insomnia, l feel both exhausted and speeded up not pleasant. I'm 70 years old and certainly...

Hi doubles up on hydroxy six weeks ago and struggling to cope with insomnia, l ...

Hidden

•3 years ago

13 Replies

The Candy Man 🍭

Hi everyone , , bit of a tongue in cheek (or sweet in mouth) post to see if any of you are like me struggling to limit snacking which has been a much bigger...

Hi everyone , , bit of a tongue in cheek (or sweet in mouth) post to see if any ...

JediReject

•3 years ago

98 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for February 2021

I have bone biopsy tomorrow

Inconclusive Jak-2 Results?

Sheilding

Trial for ET

Shielding extended

Dambusters

Unable to use conditioner

Artificial sweeteners/caffeine on anti-inflammatory diet?

Does any else suffer from extreme tiredness with fuzzy head suddenly hitting them and has to go to bed and sleep?

Tiredness

Peg injections side effects?

Bronchiectasis and MPN

Erythropoiesis

Safe to take vitamin D with hydroxycarbamide?

Mpn advocate

Blurred vision after a covid vaccine

Newly diagnosed ET Jak 2 pos.

How come Valentines Day is ALWAYS aimed at the younger generation?

Polycythaemia ruby vera & covid vaccine

Et and younger adults

IS ANYONE GOING TO GET THE SHOT FOR COVID VIRUS ....THANKS

ET with CmPL anyone??

My recent appointment with MPN specialist and B12 deficiency

Pfizer Vaccine

Interferon Injection

ET treatment is cruel and illogical

Thinking ahead

Vaccine

Insomnia and hydroxy

The Candy Man 🍭

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