Posts - MPN Voice | HealthUnlocked

MPN Voice

10,832 members•15,126 posts

All posts for August 2021

Good News Day!

For the first time since starting Pegasys my platelets are down to 297 today - bang in the middle of normal range! Nice to share some positive news that may...

For the first time since starting Pegasys my platelets are down to 297 today - b...

IrishSarah

•3 years ago

44 Replies

Not diagnosed, but suspected

Edit: letter from haematologist- BCR/ABL and JAK2 are negative m, awaiting rarer test results, but he thinks could be related to infection / endocrine issues....

Edit: letter from haematologist- BCR/ABL and JAK2 are negative m, awaiting rarer...

KayS68

•3 years ago

10 Replies

Diagnosis of results?

Hi, could someone in the know translate for me. I haven't seen Haematologist for some time, like most and have had letter today with blood results from tele...

Hi, could someone in the know translate for me. I haven't seen Haematologist for...

Jennytheb

•3 years ago

3 Replies

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Scan

Got my scan yesterday to check liver and spleen , will not find out results till October 5th on my next appointment !

Got my scan yesterday to check liver and spleen , will not find out results til...

indy22

•3 years ago

14 Replies

Hydroxyurea

who’s the one treated well with hydroxy??? Doesn’t this medication lots of side effects or effective treatment for ET??? Let me know please thank you so much…

who’s the one treated well with hydroxy??? Doesn’t this medication lots of side ...

shiela23

•3 years ago

39 Replies

Antibody test

Hi, all. So my partner is going for an antibody test today to see if he still has immunity from the vaccine. I’ve tried to google to find out how reliable...

Hi, all. So my partner is going for an antibody test today to see if he still ha...

Cja1956

•3 years ago

14 Replies

Puffy eyes

Good morning everyone, Like i said in a previous post i have been diagnosed with ET recently. I wake up for about 2 weeks every morning with puffy eyes,...

Good morning everyone, Like i said in a previous post i have been diagnosed wit...

Cinemon

•3 years ago

3 Replies

Jak question in regard to covid vaccine

A couple of months ago, I was diagnosed with Jak 2 V6175 as an interpretation from extensive blood work. My treatment is aspirin. I am concerned with...

A couple of months ago, I was diagnosed with Jak 2 V6175 as an interpretation fr...

tree_top

•3 years ago

52 Replies

Breathlessness

Struggling with breathlessness, I was hoping interferon would help this, but doesn't seem to be. I have ET and has no says it's not a symptom.

Struggling with breathlessness, I was hoping interferon would help this, but doe...

ciye

•3 years ago

11 Replies

increased iron stores in bone marrow biopsy?

Hi everyone! Has anyone had increased iron stores in Bone Marrow Biopsy even though my diagnosis is PV and typically we should be anemic?

Hi everyone! Has anyone had increased iron stores in Bone Marrow Biopsy even tho...

violetta115

•3 years ago

3 Replies

MPN-U

Hi everyone I am a 72 year old female and a new member. I was diagnosed one year ago with ET by my hematologist , but after consulting with an MPN specialist...

Hi everyone I am a 72 year old female and a new member. I was diagnosed one yea...

violetta115

•3 years ago

4 Replies

Jak 2 symptoms help

Hi just been diagnosed with jak 2. On my 2nd visit to the haematologist today she said my blood was normal .my symptoms are getting worse I have ringing in the...

Hi just been diagnosed with jak 2. On my 2nd visit to the haematologist today sh...

alan53

•3 years ago

3 Replies

Antibody Levels Predictive of Moderna's Vaccine Efficacy: Study

NEW YORK (Reuters) - Antibody levels are a good predictor of how effective Moderna Inc's COVID-19 vaccine is, according to a new study released on Tuesday, a...

NEW YORK (Reuters) - Antibody levels are a good predictor of how effective Moder...

Manouche

•3 years ago

1 Reply

ET and MF

I am Spanish, but I live and work in Gloucester, England, and to say Hello .., I was diagnosed with ET in 2020 and MF this year, and trying to manage this,...

I am Spanish, but I live and work in Gloucester, England, and to say Hello .., I...

jorestep

•3 years ago

13 Replies

Booster shots?

Hi all, I’m curious on the consensus regarding a third booster shot given the recent recommendation for the immunosuppressed. Does ET treated with the max...

Hi all, I’m curious on the consensus regarding a third booster shot given the re...

Purple478273

•3 years ago

45 Replies

Has anyone experienced weight gain with hydoxycarbamide?

weight gain

Hidden

•3 years ago

18 Replies

ET SUFFERING DIZZINESS

Who else suffering dizziness swinging headache???

shiela23

•3 years ago

4 Replies

Update 5.8 = Good news.

Just did my updated labs. On the whole, I am very pleased with how things are going. The numbers look better than 4 weeks ago. PLT now WNL at 398 – down...

Just did my updated labs. On the whole, I am very pleased with how things are g...

hunter5582

•3 years ago

74 Replies

Two Questions. Interferon and JAK %

Had by 3 monthly consultation yesterday, bloods all ok, but my cough is still there.. The consultants are unaware of any possible link to interferon and have...

Had by 3 monthly consultation yesterday, bloods all ok, but my cough is still th...

shiftzz

•3 years ago

4 Replies

Advances in the Polycythemia Vera Paradigm Signal Hope for Providers in Pennsylvania Cluster Area

« The interferons are our older agents, but they're being studied in new ways. As we have molecular data available to us and as we have better tools to look at...

« The interferons are our older agents, but they're being studied in new ways. A...

Manouche

•3 years ago

3 Replies

Does HU lower neutraphils for anyone?

Does anyone in HU have low neutraphils? How often does blood need to be drawn?

otisthedog

•3 years ago

6 Replies

Interferon journey started with ET JAK+ at platelets counts 550

I start interferon journey yesterday after taking 4 months of hydroxyurea. My initial blood platelets was as high as ~950 in April, then gradually decreases to...

I start interferon journey yesterday after taking 4 months of hydroxyurea. My in...

Sam2022

•3 years ago

14 Replies

Has anyone with ET suffered sudden complete hearing loss in one ear?

This has happened to me after having my ear looked at querying wax. Told ear was clear and immediately after leaving audiologist my hearing had gone...

This has happened to me after having my ear looked at querying wax. Told ear was...

azaelea

•3 years ago

10 Replies

Nausea

Good morning everyone on MPN family. Just a brief query. I started Hydroxy a week ago and am having some nausea symptoms on and off. Can anyone advise how...

Good morning everyone on MPN family. Just a brief query. I started Hydroxy a we...

Oscarsboy

•3 years ago

34 Replies

Fingertip numbness

I've been on hydroxycarbamide for ET since January. The numbness occurs occasionally and leaves after around 30 mins. I'd be keen to know how common this is...

I've been on hydroxycarbamide for ET since January. The numbness occurs occasion...

Hidden

•3 years ago

5 Replies

Lower hemoglobin is good for health after all? It may protect against obesity and metabolic syndrome

« A new study led by the University of Oulu in Finland refutes the belief that high hemoglobin levels are always desirable for health. A study based on two...

« A new study led by the University of Oulu in Finland refutes the belief that h...

Manouche

•3 years ago

1 Reply

Mystery procedures

I’ve just had a telephone consultation with a haematologist and I’ve been told that I need to have an ultrasound done and some other procedure. The lady had a...

I’ve just had a telephone consultation with a haematologist and I’ve been told t...

hall2

•3 years ago

11 Replies

Can we get Shingrix vaccine ahead of MF treatment?

I read that we are more susceptible to shingles. We can't have the live vaccine but do mpn doctors recommend Shingrix before starting treatment?

I read that we are more susceptible to shingles. We can't have the live vaccine ...

Scaredy_cat

•3 years ago

5 Replies

Is ET a blood cancer?

Hi everyone. I am new to this support group and been following you for a couple of weeks now. I am very impressed with all the comments and help offered. I...

Hi everyone. I am new to this support group and been following you for a couple ...

Growingforward

•3 years ago

37 Replies

Advice please

Hi, I wondered if any of you could help me, I’m asking for a friend of a friend & I know a lot of you are very knowledgeable about blood cancers. This person...

Hi, I wondered if any of you could help me, I’m asking for a friend of a friend...

SRH55

•3 years ago

11 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for August 2021

Good News Day!

Not diagnosed, but suspected

Diagnosis of results?

Scan

Hydroxyurea

Antibody test

Puffy eyes

Jak question in regard to covid vaccine

Breathlessness

increased iron stores in bone marrow biopsy?

MPN-U

Jak 2 symptoms help

Antibody Levels Predictive of Moderna's Vaccine Efficacy: Study

ET and MF

Booster shots?

Has anyone experienced weight gain with hydoxycarbamide?

ET SUFFERING DIZZINESS

Update 5.8 = Good news.

Two Questions. Interferon and JAK %

Advances in the Polycythemia Vera Paradigm Signal Hope for Providers in Pennsylvania Cluster Area

Does HU lower neutraphils for anyone?

Interferon journey started with ET JAK+ at platelets counts 550

Has anyone with ET suffered sudden complete hearing loss in one ear?

Nausea

Fingertip numbness

Lower hemoglobin is good for health after all? It may protect against obesity and metabolic syndrome

Mystery procedures

Can we get Shingrix vaccine ahead of MF treatment?

Is ET a blood cancer?

Advice please

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