Posts - MPN Voice | HealthUnlocked

MPN Voice

10,445 members • 14,398 posts

All posts for February 2024

Need your advice please

For the last 60 years I have been a vigilant weight watcher, daily exerciser and have watched my calorie intake. When I commenced treatment for my...

For the last 60 years I have been a vigilant weight watcher, daily exerciser a...

Goosebumps52

•3 months ago

13 Replies

Help please to start again receiving daily emails from health unlocked

Hi everyone A few days ago my daily emails stopped and I can now only read peoples posts by going on to the news feed on an email from five days ago. Could...

Hi everyone A few days ago my daily emails stopped and I can now only read peopl...

Na56

•3 months ago

4 Replies

Splenomegaly and Interferon

Hi! Did anyone who has been treated with Interferon for PV or MF and got their allele burden down see any reduction in splenomegaly? And if so, to what......

Hi! Did anyone who has been treated with Interferon for PV or MF and got their a...

Dovakin

•3 months ago

2 Replies

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Switched from hydroxy to anagrelide advice.

Hello to all of you. I m 73 Yr. old woman with myelofibrosis. After a tough year with hospital admissions due to gallstones & sepsis ( recurrent,) & 5stone...

Hello to all of you. I m 73 Yr. old woman with myelofibrosis. After a tough yea...

Didgeridoo2

•3 months ago

4 Replies

Cancer support line

I’ was told about this support line by a friend who had a different cancer. Worth checking out if you need a listening ear. The Macmillan Support Line on...

I’ was told about this support line by a friend who had a different cancer. Wor...

Rachelthepotter

•3 months ago

1 Reply

Sore mouth

Hello, I am 73 years old and was diagnosed with ET 5 months ago. I am currently on 1000 mg of hydroxycarbamide daily. I have been experiencing a very sore...

Hello, I am 73 years old and was diagnosed with ET 5 months ago. I am currently...

Lilbert

•3 months ago

23 Replies

Thank you for responses to Allipurinol

Thank you to all that responded. It seems more patients had a month of Allipurinol tablets alongside hydroxy or ruxolinitib. This is good to hear. I checked...

Thank you to all that responded. It seems more patients had a month of Allipurin...

artydutch

•3 months ago

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platelets on rise

Hello , I’m 71 and really worried been on hydroxycarbamide for 8 years now and last year my platelets started to rise and 2 days ago I had bloods done at my...

Hello , I’m 71 and really worried been on hydroxycarbamide for 8 years now and l...

Birdlady2021

•3 months ago

1 Reply

When on a weekly dose of Pegasys is it ok to occasionally alter the day you inject?

Hi everyone, I’m about to try Pegasys in a few weeks time on a weekly dose of 45. If I get any unpleasant side effects I wondered if occasionally it’s ok to...

Hi everyone, I’m about to try Pegasys in a few weeks time on a weekly dose of 45...

Na56

•3 months ago

23 Replies

Modbury 123

Hi I have recently been in hospital with acute diverticulitis I am home feeling much better but concerned as my platelets have gone from 350 to 550 I have...

Hi I have recently been in hospital with acute diverticulitis I am home feeli...

Modbury123

•3 months ago

10 Replies

Itchy red spots

I was diagnosed with PV June of 2022. I’m on 500 mg hydroxyurea every other day. I’ve recently started to have recurring outbreaks of itchy red spots, similar...

I was diagnosed with PV June of 2022. I’m on 500 mg hydroxyurea every other day....

Greycat4

•3 months ago

4 Replies

Transplant Route

Hi everyone. I was diagnosed with primary MF 9 years ago and have been relatively well managed on Ruxolitinib for most of that time. Recently however my...

Hi everyone. I was diagnosed with primary MF 9 years ago and have been relative...

Cazbolac

•3 months ago

10 Replies

Finally got Ruxolinitib

Today I picked up my first ruxolinitib tablets, to start on Monday, after the last blood tests are back from the lab. This has been a marathon of nearly a...

Today I picked up my first ruxolinitib tablets, to start on Monday, after the l...

artydutch

•3 months ago

16 Replies

7 days from BMT

Hi all, I know it's been a while since I posted. I just wanted to let you all know that I'm 7 days from transplant, and just had my first lot of chemo today....

Hi all, I know it's been a while since I posted. I just wanted to let you all kn...

Sagiegirl

•3 months ago

60 Replies

Inherited polygenic effects on common hematological traits influence clonal selection on JAK2V617F and the development of MPNs

From our friends at MPN Advocacy & Education International. This is a KISS summary of a new Familial MPN study....

From our friends at MPN Advocacy & Education International. This is a KISS summ...

hunter5582

•3 months ago

3 Replies

life insurance

hi I’m new to the group, I wondered if insurance companies pay out on ordinary insurance if you have blood cancer (ET)

hi I’m new to the group, I wondered if insurance companies pay out on ordinary i...

Caravan-24

•3 months ago

6 Replies

Covid and paxlovid

Hi all, I just wanted to share my experience with Paxlovid Covid medication. Having PV and low white cell count, I have been really careful ever since Covid...

Hi all, I just wanted to share my experience with Paxlovid Covid medication. Ha...

Moina-vdh

•3 months ago

7 Replies

PV question

Hi, I have been diagnosed with PV over 2 years, just wondering can a person with this condition get Botox/etc, any advice would be much appreciated. All...

Hi, I have been diagnosed with PV over 2 years, just wondering can a person w...

Axelcharlie

•3 months ago

6 Replies

heart arteries heavily calcified

hi I’ve had PV and ET since August 2015 I recently started with chest pain after MRI and CT angiogram I was diagnosed with heavily calcified LAD artery and...

hi I’ve had PV and ET since August 2015 I recently started with chest pain after...

Phil1955

•3 months ago

4 Replies

ET diagnosis at 18

Hi My Son has just been diagnosed with ET at the age of 18 - bit of a shock to say the least . Just wondering what to expect as a parent

Hi My Son has just been diagnosed with ET at the age of 18 - bit of a shock to...

Gordem100

•3 months ago

12 Replies

Pegasys

Husband was started on Pegasys after being on Ruxolitinib since 2017.. He has Polycythaemia Vera He has coped really well with Rux but has had to come off...

Husband was started on Pegasys after being on Ruxolitinib since 2017.. He has Po...

waddles22

•3 months ago

7 Replies

Interferon reaction

Hi all,I've recently joined the group and already have found it a great source of information & reassuring messages. I started interferon back in August and...

Hi all,I've recently joined the group and already have found it a great source o...

RuaSaoirse

•3 months ago

7 Replies

hydroxycarbamide and hair dye

Hi, I’ve been taking 500mg daily for 1 month now. I’m wondering if it’s ok to use any hair dye without proxide or is pure organic best?

Hi, I’ve been taking 500mg daily for 1 month now. I’m wondering if it’s ok to us...

ordinarypeople2

•3 months ago

20 Replies

clotting whilst on warfarin for clots in lungs.

I’ve been trying to find out why I’ve had breathlessness for 3 years. In 2021 NHS pulmonary consultant arranged Ct scan abd lung function tests. Lung function...

I’ve been trying to find out why I’ve had breathlessness for 3 years. In 2021 N...

130396

•3 months ago

5 Replies

Cancer

I have bowel cancer along with my ET I want to bring on board an MPN on board for after care do I ask the haematologist or GP to do this

I have bowel cancer along with my ET I want to bring on board an MPN on board fo...

ChillyAsh34

•3 months ago

6 Replies

starting hydroxy as pathway to Rux

hello I’m 58 and diagnosed with PV 8 years ago which was managed up to October 22 with aspirin and venesection. My platelets and white blood cells started...

hello I’m 58 and diagnosed with PV 8 years ago which was managed up to October...

Sanga

•3 months ago

12 Replies

myasthenia gravis

has anyone experienced this autoimmune disorder along with thrombocythemia?

Jazzman7

•3 months ago

11 Replies

Retacrit Shots

I’m posting this in hopes it may help other MPN sufferers. In early December, 2023, I saw my longstanding oncologist of 20 years. My labs showed 7.2...

I’m posting this in hopes it may help other MPN sufferers. In early December, ...

Bippers

•3 months ago

4 Replies

Burning feeling in my throat

Hi I am 59 and was diagnosed with Polycthemia Vera a year ago Since I was diagnosed they have me on Hydroxyurea 500 mg 2x a day . I also take Plavix as well...

Hi I am 59 and was diagnosed with Polycthemia Vera a year ago Since I was diag...

Krisim

•3 months ago

7 Replies

Cataract surgery?

Has anyone had any cataract surgery while taking Pegasys? Is there a problem with eye surgery while taking Interferon? I'm about to be changed over to Pegasys...

Has anyone had any cataract surgery while taking Pegasys? Is there a problem wit...

dogsandhorses

•3 months ago

4 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for February 2024

Need your advice please

Help please to start again receiving daily emails from health unlocked

Splenomegaly and Interferon

Switched from hydroxy to anagrelide advice.

Cancer support line

Sore mouth

Thank you for responses to Allipurinol

platelets on rise

When on a weekly dose of Pegasys is it ok to occasionally alter the day you inject?

Modbury 123

Itchy red spots

Transplant Route

Finally got Ruxolinitib

7 days from BMT

Inherited polygenic effects on common hematological traits influence clonal selection on JAK2V617F and the development of MPNs

life insurance

Covid and paxlovid

PV question

heart arteries heavily calcified

ET diagnosis at 18

Pegasys

Interferon reaction

hydroxycarbamide and hair dye

clotting whilst on warfarin for clots in lungs.

Cancer

starting hydroxy as pathway to Rux

myasthenia gravis

Retacrit Shots

Burning feeling in my throat

Cataract surgery?

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