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MPN Voice

10,437 members • 14,387 posts

All posts for August 2020

Successful critical illness insurance claim

I was diagnosed with PV JAK2 neg in April 2020 following a bone marrow biopsy and am taking a low dose aspirin only. I put in a claim to Aviva in July 2020...

I was diagnosed with PV JAK2 neg in April 2020 following a bone marrow biopsy an...

PBD1

•4 years ago

6 Replies

Newish here but loving it! ET + JAK 2 + asprin only

So thank to everyone for their time and insights and tips and knowledge. Just wondering if this rings a bell with any one as an ET symptom? I have temperature...

So thank to everyone for their time and insights and tips and knowledge. Just wo...

Cassandra61

•4 years ago

5 Replies

How quickly do platelets decrease

My platelets were 700. I started taking 500 mg Hydroxy Daily 2weeks ago. Blood test next Friday. Telephone Consultation 11th September. Should I expect a fall...

My platelets were 700. I started taking 500 mg Hydroxy Daily 2weeks ago. Blood t...

CMD53

•4 years ago

24 Replies

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Hoping to find out others experiences to see if I have anything to be concerned about please

Hi, I was hoping to find out if anyone has been diagnosed with ET with only slightly elevated platelets or has anyone had the experience that they just creep...

Hi, I was hoping to find out if anyone has been diagnosed with ET with only sl...

kase28

•4 years ago

21 Replies

PV: outcomes, unmet needs, and therapeutic strategies

Polycythemia Vera: outcomes, unmet needs, and therapeutic strategies...

Manouche

•4 years ago

1 Reply

Hair loss on Interferon

Hi I have been diagnosed with ET for about 3 years now, have been on baby aspirin and for the last 4 Months I have just started interferon injections, but have...

Hi I have been diagnosed with ET for about 3 years now, have been on baby aspiri...

Nickifoxy

•4 years ago

8 Replies

THANKS!!!

Thank you everyone for all the personal stories; advice; tips; experiences; honesty and sometimes a smile or a laugh!!! This forum has helped me so much so I...

Thank you everyone for all the personal stories; advice; tips; experiences; hone...

Hidden

•4 years ago

1 Reply

I tested positive for the JAK2 mutation

I am in such a bad state of mind now and I don’t know what to do. A CBC blood test a few months ago revealed I had a platelet count of 648. My doctor...

I am in such a bad state of mind now and I don’t know what to do. A CBC blood t...

Jdb123

•4 years ago

34 Replies

has anyone been on exjade

You can all see my post from 2 or so weeks ago. I knew shortly after my iron levels were elevated due to transfusions. Ferritin is also an inflammatory marker...

You can all see my post from 2 or so weeks ago. I knew shortly after my iron lev...

skodaguy

•4 years ago

4 Replies

1st virtual international MPN Awareness event , 10th September 2020

You are invited to join the 1st virtual, international MPN Awareness event on Thursday 10th September, which is being hosted by the MPN Austria...

You are invited to join the 1st virtual, international MPN Awareness event on Th...

Mazcd

Partner•4 years ago

16 Replies

New here!

Hi all...I m not sure why it took me so long to come to this forum. I am 52 and was diagnosed with Et Jak 2 negative back in 2010 with a platelet count of 2.3...

Hi all...I m not sure why it took me so long to come to this forum. I am 52 and ...

lunasurf

•4 years ago

16 Replies

Advice needed update

Hello everyone. I would like to say a big thank you for all the support and good advice I was given. My husband had his blood test Wednesday, I managed to see...

Hello everyone. I would like to say a big thank you for all the support and goo...

Jean24

•4 years ago

12 Replies

Hi everyone,

I've noticed there's an American Facebook support group for polycythemia vera, does anyone know of a similar thing in the UK?

I've noticed there's an American Facebook support group for polycythemia vera, ...

john0084

•4 years ago

3 Replies

NEXT 'MATES' ZOOM CAFE CATCHUP

Post by MPN-MATE Admin » Thu Aug 27, 2020 9:27 pm CAFE CATCH UP – Virtually on ZOOM of course... 8-) All are welcome of course... 8-)...

Post by MPN-MATE Admin » Thu Aug 27, 2020 9:27 pm CAFE CATCH UP – Virtually on ...

socrates_8

•4 years ago

7 Replies

Supplements

Seen a lot of posts by people with all kinds of side effects from this disease so I just thought I’d put this out here in case someone can benefit from it -...

Seen a lot of posts by people with all kinds of side effects from this disease s...

Handysmurf

•4 years ago

12 Replies

How European Startups Have Advanced Cancer T-Cell Therapy in 2020

« I feel that there is a prospect for immunotherapy to be successfully treating most cancers within the next 25 years.”...

« I feel that there is a prospect for immunotherapy to be successfully treating...

Manouche

•4 years ago

3 Replies

ET and double vision?

hi...i’m vivi with ET. i’ve been on anagrlyde on AM and HU on PM...i have a sudden double vision attack for about 10 minutes in three consecutive days...is...

hi...i’m vivi with ET. i’ve been on anagrlyde on AM and HU on PM...i have a sudd...

vivihtp

•4 years ago

16 Replies

Shingles vaccine

Shingles vaccine. Hi am am ETJak2+, I am unable to have the live shingles vaccine with nhs, but I have read that there is an inert vaccine available. Has...

Shingles vaccine. Hi am am ETJak2+, I am unable to have the live shingles vaccin...

Hydrox

•4 years ago

10 Replies

Food as Medicine

There is a fair bit of interest in diet and its impact on MPNs. For those with that interest, there is a training called "The Pharmacy in Your Kitchen."...

There is a fair bit of interest in diet and its impact on MPNs. For those with ...

hunter5582

•4 years ago

37 Replies

September Blood Cancer Awareness Month

As you may be aware, the COVID-19 pandemic has had a huge impact on fundraising events and activities resulting in loss of income for charities which will have...

As you may be aware, the COVID-19 pandemic has had a huge impact on fundraising ...

Mazcd

Partner•4 years ago

Be the first to reply

Low body temperature

I had my temperature checked today prior to venesection, the reading was 35.5, she took it 3 times to be sure. I've now checked this reading online and it's...

I had my temperature checked today prior to venesection, the reading was 35.5, s...

john0084

•4 years ago

10 Replies

Crotchety - grandma aged 74 with PV

Is hydroxicarbamide and low dose aspirin after seven years failing to control my symptoms? I have involuntary weight loss, a feeling of fullness ( doesn't feel...

Is hydroxicarbamide and low dose aspirin after seven years failing to control my...

Crotchety

•4 years ago

2 Replies

Asprin?

Hi everyone. I’m a 45yr old female that was diagnosed with ET CALR Dec 19. At the time of diagnosis my platelets were 1800, so I was immediately put on...

Hi everyone. I’m a 45yr old female that was diagnosed with ET CALR Dec 19. At...

CK79

•4 years ago

11 Replies

Being taken off shielding list?

Just watched the 1st August video. Very informative, thank you. Just wondering what others think re Scotland taking mpn patients on aspirin only off...

Just watched the 1st August video. Very informative, thank you. Just wondering...

Penny-10

•4 years ago

12 Replies

Hydroxyurea & itching

Hi ... can anyone please please tell me if hydroxyurea got rid of PV itching ??????? OH my Lord.. I would love an answer... for me it’s not just water that...

Hi ... can anyone please please tell me if hydroxyurea got rid of PV itching ??...

Hidden

•4 years ago

26 Replies

THC?

I have been having a lot of trouble sleeping and have recently started to use 5 mg of THC with my CBD to see if that will help. I have PV and take Pegasys...

I have been having a lot of trouble sleeping and have recently started to use 5 ...

DN515

•4 years ago

4 Replies

Scuba Diving with High Platelets ( ET)

I am a 57 year old woman with ET. Platelets have been reduced to 650 with the use of Hydroxurea (10 capsules per week) . Lately I have been on a holiday and...

I am a 57 year old woman with ET. Platelets have been reduced to 650 with the us...

Elzbietta

•4 years ago

12 Replies

Platlets

Bit put out as blood test came back showing my counts gone up I've been on hydra since Feb and be going down but he said I hadn't reached target started at 900...

Bit put out as blood test came back showing my counts gone up I've been on hydra...

Chel1

•4 years ago

3 Replies

Surgery upcoming.

Hi everyone. This is Ellen, USA, PVjak2+, age 74, on hydroxyurea, aspirin, and periodic phlebotomy. Was hospitalized two weeks ago with acute pancreatitis....

Hi everyone. This is Ellen, USA, PVjak2+, age 74, on hydroxyurea, aspirin, and...

falconered53

•4 years ago

11 Replies

Travel to Denmark?

Hi I was wondering if anyone else since shielding has been paused have considered travelling yet or been on any foreign trips? I normally go to a trade show...

Hi I was wondering if anyone else since shielding has been paused have considere...

Jonnymitts

•4 years ago

19 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for August 2020

Successful critical illness insurance claim

Newish here but loving it! ET + JAK 2 + asprin only

How quickly do platelets decrease

Hoping to find out others experiences to see if I have anything to be concerned about please

PV: outcomes, unmet needs, and therapeutic strategies

Hair loss on Interferon

THANKS!!!

I tested positive for the JAK2 mutation

has anyone been on exjade

1st virtual international MPN Awareness event , 10th September 2020

New here!

Advice needed update

Hi everyone,

NEXT 'MATES' ZOOM CAFE CATCHUP

Supplements

How European Startups Have Advanced Cancer T-Cell Therapy in 2020

ET and double vision?

Shingles vaccine

Food as Medicine

September Blood Cancer Awareness Month

Low body temperature

Crotchety - grandma aged 74 with PV

Asprin?

Being taken off shielding list?

Hydroxyurea & itching

THC?

Scuba Diving with High Platelets ( ET)

Platlets

Surgery upcoming.

Travel to Denmark?

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