Posts - MPN Voice | HealthUnlocked

MPN Voice

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All posts for December 2023

Leukocytes in urine

Happy NewYear to all, best wishes for 2024. I have leukocytes showing in my urine, no other issues, does anyone know if this is linked to ET in any way. Just...

Happy NewYear to all, best wishes for 2024. I have leukocytes showing in my uri...

Hidden

•1 year ago

8 Replies

myelofibrosis

Ive been on watch and wait now for a year or so just taking aspirin ,but I read somewhere that some treatment can stop the disease progressing ,anyone know...

Ive been on watch and wait now for a year or so just taking aspirin ,but I read...

glyndale

•1 year ago

2 Replies

Ruxolitinib - more news.

Hi all. Another good report on Ruxolitinib....

AirconBob

•1 year ago

10 Replies

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itchy skin

Hi all, I have this terrible itchy skin,mostly arms and legs,after any contact with water,apart from the swimming pool,strangely,and wondered if anyone could...

Hi all, I have this terrible itchy skin,mostly arms and legs,after any contact ...

Nursey30

•1 year ago

33 Replies

MPN specialist

Hi everything and happy new year Just wondering if anyone in the Nottingham area is aware of an MPN specialist in the area, or if anyone else is seen at...

Hi everything and happy new year Just wondering if anyone in the Nottingham are...

jodary

•1 year ago

19 Replies

Belly be gone

Hello fellow ET ers, I've been on hydroxy for 3 years now and platelets are happy (currently on 500mg daily). Alas, I have a huge problem with belly bloat,...

Hello fellow ET ers, I've been on hydroxy for 3 years now and platelets are hap...

Goosebumps52

•1 year ago

8 Replies

iron overload

An early happy new year to all. Just curious if anyone has iron overload from blood transfusions and if they have started any therapy for this. My husband has...

An early happy new year to all. Just curious if anyone has iron overload from bl...

Bainbridge

•1 year ago

13 Replies

started Besremi but worried about autoimmune diseases.

Hi, Happy New Year to you and your loved ones ❤️. Underwent full assessment for the ECLIPSE PV trial. Incidental findings: ANA antibodies 1:80, Anti-RNP 2.2...

Hi, Happy New Year to you and your loved ones ❤️. Underwent full assessment for ...

Yarw

•1 year ago

19 Replies

Protection for Kidneys

Does anybody know of anything nutritionally that will protect the kidneys like Milk Thistle protects the liver?

Does anybody know of anything nutritionally that will protect the kidneys like M...

hsdale3

•1 year ago

8 Replies

AML update

Hello MPN friends, I thought I would post an update on my AML. I am now having Azacitadine and Venetoclax as an in-patient and so far so good - I just have...

Hello MPN friends, I thought I would post an update on my AML. I am now having A...

Otterfield

•1 year ago

56 Replies

Starting Pegasys soon

Hi all and merry belated Christmas So… chemo…. I was diagnosed with ET about a year ago and finally found an MPN specialist in Montreal after a few months...

Hi all and merry belated Christmas So… chemo…. I was diagnosed with ET abou...

IsabelleHo

•1 year ago

17 Replies

milk thistle works!

I started taking 275 mg milk thistle extract twice per day hoping to get liver enzyme values down after taking peginterferon for most of this year. The...

I started taking 275 mg milk thistle extract twice per day hoping to get liver ...

Mishie14

•1 year ago

38 Replies

Hydroxycarbamide and lungs

I have been on hydroxycarbamide for nearly 9 years with no serious problems, but now I am getting slight breathlessness. I was surprised to read that this...

I have been on hydroxycarbamide for nearly 9 years with no serious problems, but...

Zeigler

•1 year ago

16 Replies

Ruxolitinib is intolerant, what should I do

I started taking Ruxolitinib at the end of 2018, when I had a huge spleen, MF3, and was 31 years old. I have been taking this medication for 5 years now....

I started taking Ruxolitinib at the end of 2018, when I had a huge spleen, MF3, ...

merlisa

•1 year ago

5 Replies

interferon

Happy new year to all Now Christmas is over my next appointment is looming on January 5th. I am to discuss whether to start Peg . I have ET and have been on...

Happy new year to all Now Christmas is over my next appointment is looming on J...

jodary

•1 year ago

22 Replies

Free Covid tests for vulnerable

Does anyone know how we get free covid tests now that the government has stopped its postal service? I have looked on the NHS sites and there is no clear...

Does anyone know how we get free covid tests now that the government has stopped...

Jenny_F

•1 year ago

22 Replies

MOSAICC Trial Aberdeen University

"Could toenails help identify blood cancer causes" https://www.bbc.co.uk/news/articles/c51z348p4e9o This article is on BBC Scotland's website today. I...

"Could toenails help identify blood cancer causes" https://www.bbc.co.uk/news/...

DJK12

•1 year ago

3 Replies

An Interesting Read for Anyone with both JAK2 and TET2 Mutations

I have ET with both JAK2 and TET2 mutations and I found this link very informative as it's explained simply!...

I have ET with both JAK2 and TET2 mutations and I found this link very informati...

Trueblue8

•1 year ago

7 Replies

2022 diagnostic criteria for MPNs

I might have posted this before- apologies for double posting if so -but it’s a good clear explanation of the currently accepted diagnostic criteria for the...

I might have posted this before- apologies for double posting if so -but it’s a...

Gipsy123

•1 year ago

1 Reply

Info, please , about what genetic/genomic data can now be gathered from a peripheral blood test

Hi my MPN friends I have PMF, and I understand that the genetic/genomic data. (Not entirely sure what the difference is ) (mutations, etc. ) about my...

Hi my MPN friends I have PMF, and I understand that the genetic/genomic data. (...

Gipsy123

•1 year ago

3 Replies

Useful resources abt MPNs.

https://www.mympnteam.com/resources/primary-myelofibrosis-causes-symptoms-and-treatments

https://www.mympnteam.com/resources/primary-myelofibrosis-causes-symptoms-and-tr...

Gipsy123

•1 year ago

2 Replies

What does this article mean about transplant outcomes vs Jak Inhibitors??

Does it mean that outcomes from HSCT are the same as with Jak inhibitors? ???...

Does it mean that outcomes from HSCT are the same as with Jak inhibitors? ???.....

Aneliv9

•1 year ago

7 Replies

Covid update

I had a call back after 2.5 days from the covid medication delivery unit. They asked me to go to the local hospital to get an infusion of sotrovimab. The...

I had a call back after 2.5 days from the covid medication delivery unit. They ...

artydutch

•1 year ago

9 Replies

Merry Christmas & Happy New Year

Wishing you all peace and joy during this Season and throughout the coming year.

Wishing you all peace and joy during this Season and throughout the coming year....

hunter5582

•1 year ago

39 Replies

It’s Christmas Eve

Happy Holidays Here's to better times ahead for us all!

krotsida

•1 year ago

4 Replies

BEST WISHES FOR A HAPPY XMAS & YOUR MOST PROSPEROUS OF NEW YEARS...

Best wishes to Maz & everyone from Health Unlocked & MPN Voice... Steve (Sydney) ox

Best wishes to Maz & everyone from Health Unlocked & MPN Voice... Steve (Sydne...

socrates_8

•1 year ago

20 Replies

Can I help

Hi I am Harry and have so far survived Myelofibrosis for 6 years. It has been a very bumpy ride with no guarantee that you will be still around next week...

Hi I am Harry and have so far survived Myelofibrosis for 6 years. It has bee...

harryandliz1

•1 year ago

5 Replies

Pegasus - how long to work

Happy Christmas to everyone in this amazing group. For those taking it, I just wondered what your experience was when first taking Pegasus Interferon. I've had...

Happy Christmas to everyone in this amazing group. For those taking it, I just w...

Fivecatsandcounting

•1 year ago

20 Replies

Excersise and fibrosis

I just wanted to reach out to you friendly helpful folk on here with a thought that's been nagging me, I've recently been told that I have grade1/2 fibrosis,...

I just wanted to reach out to you friendly helpful folk on here with a thought t...

john0084

•1 year ago

7 Replies

Covid

I should have been at a relatives tonight but they phoned to say they’d got covid but thought I’d be ok to visit if I wore a mask. I said I wouldn’t be going,...

I should have been at a relatives tonight but they phoned to say they’d got covi...

lizzziep

•1 year ago

34 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for December 2023

Leukocytes in urine

myelofibrosis

Ruxolitinib - more news.

itchy skin

MPN specialist

Belly be gone

iron overload

started Besremi but worried about autoimmune diseases.

Protection for Kidneys

AML update

Starting Pegasys soon

milk thistle works!

Hydroxycarbamide and lungs

Ruxolitinib is intolerant, what should I do

interferon

Free Covid tests for vulnerable

MOSAICC Trial Aberdeen University

An Interesting Read for Anyone with both JAK2 and TET2 Mutations

2022 diagnostic criteria for MPNs

Info, please , about what genetic/genomic data can now be gathered from a peripheral blood test

Useful resources abt MPNs.

What does this article mean about transplant outcomes vs Jak Inhibitors??

Covid update

Merry Christmas & Happy New Year

It’s Christmas Eve

BEST WISHES FOR A HAPPY XMAS & YOUR MOST PROSPEROUS OF NEW YEARS...

Can I help

Pegasus - how long to work

Excersise and fibrosis

Covid

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