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MPN Voice

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All posts for June 2020

Illuminating novel biological aspects and potential new therapeutic approaches for chronic myeloproliferative malignancies

Abstract This review reflects the presentations and discussion at the 14th post‐ASH International Workshop on Chronic Myeloproliferative Malignancies, which...

Abstract This review reflects the presentations and discussion at the 14th post‐...

Manouche

•5 years ago

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E T and potassium

Hi all. I was diagnosed with E T few months ago. Haematologist is waiting for Covid to slow down more to start treatment as it will weaken my immune system....

Hi all. I was diagnosed with E T few months ago. Haematologist is waiting for Co...

Cokopops

•5 years ago

14 Replies

Critical illness insurance

Has anyone in the UK, managed to get critical illness insurance cover after a heart attack.

Has anyone in the UK, managed to get critical illness insurance cover after a h...

Hidden

•5 years ago

3 Replies

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Weight gain on hydroxycarbamide

Has anyone put a lot of weight on with hydroxycarbamide. I've been on it for 2 years and put nearly a stone on. I don't really eat a great deal and still...

Has anyone put a lot of weight on with hydroxycarbamide. I've been on it for 2 y...

poly2

•5 years ago

10 Replies

Pre-MF 31yr old

Hello, I am new here. 31 years old Got diagnosis pre-mf.. I've got no symptoms.. my blood panel is perfect. Only i have some troubles with my liver enzymes....

Hello, I am new here. 31 years old Got diagnosis pre-mf.. I've got no symptoms.....

littleluigi

•5 years ago

9 Replies

Milburn.

Quick Summary: Age 80. Diagnosed with ET 12 years ago when had blood clot in toe. Platelets @ 1.5m Put onto Hydro which worked well for some 10 years when I...

Quick Summary: Age 80. Diagnosed with ET 12 years ago when had blood clot in toe...

Milburn

•5 years ago

5 Replies

Query

Good afternoon Maz, I'm still shielding (live northern ireland), my question is my elderly father in law is just home from hospital (chest infection, uti etc),...

Good afternoon Maz, I'm still shielding (live northern ireland), my question is ...

Simris

•5 years ago

2 Replies

PV and Teaching Amidst Covid

Hi All. I am age 54, have PV and also rheumatoid arthritis that may or may not be related to my MPN. I was being treated with Pegasys, and my blood levels were...

Hi All. I am age 54, have PV and also rheumatoid arthritis that may or may not b...

clevemic

•5 years ago

5 Replies

Blood sugar spike

Ok last 2 blood tests have shown a major blood sugar spike.. Now looks like type 2 diebeties Doctors tomorrow to confirm Diet and control to reduce blood...

Ok last 2 blood tests have shown a major blood sugar spike.. Now looks like type...

Hughesf

•5 years ago

7 Replies

Update 3

After 2 inconclusive jak2 tests, i got the third one today that said a mutation has been detected in low percentage of the cells. :( So now i am waiting for my...

After 2 inconclusive jak2 tests, i got the third one today that said a mutation ...

Winterella

•5 years ago

6 Replies

Interesting articles effect of lockdown on mental health

Found these very interesting. https://metro.co.uk/2020/06/12/lockdowns-impact-mental-health-anxiety-12689994/...

Found these very interesting. https://metro.co.uk/2020/06/12/lockdowns-impact-...

Hidden

•5 years ago

1 Reply

What are parents doing for childcare arrangements?

Hi everyone. Last month our nursery started taking children again and in September my eldest is supposed to be starting school. What are other parents doing...

Hi everyone. Last month our nursery started taking children again and in Septe...

Timjonze

•5 years ago

13 Replies

Any MPN/MDS Crossover Syndrome Patients?

MDS/MPN overlap syndrome I was diagnosed in March 2019 and am currently on EPO weekly injections to improve my Haemoglobin. I take Asprin to help with my high...

MDS/MPN overlap syndrome I was diagnosed in March 2019 and am currently on EPO ...

Tartanlady

•5 years ago

13 Replies

PV and Turmeric

Hi does anyone know if it’s okay to take Turmeric if you are taking Hydroxycarbamide?

Hi does anyone know if it’s okay to take Turmeric if you are taking Hydroxycarba...

Denman23

•5 years ago

9 Replies

Mpn treatment?

https://www.pvreporter.com/immunotherapy-in-myeloproliferative-diseases/ Can group members pl read and elaborate i read a bit it ws shared on multiple...

https://www.pvreporter.com/immunotherapy-in-myeloproliferative-diseases/ Ca...

Aojai

•5 years ago

2 Replies

Bone Marrow Biopsy insights please

Hi friends, I’m having my first bone marrow biopsy on Wednesday and would be great to hear from any of you about how long the discomfort lasts after the...

Hi friends, I’m having my first bone marrow biopsy on Wednesday and would be gr...

IrishSarah

•5 years ago

74 Replies

Virtual Clinics

I had my first consultant appointment by phone yesterday - bang on schedule, plenty of time to discuss everything we needed and much quicker and more...

I had my first consultant appointment by phone yesterday - bang on schedule, ple...

AndyT

•5 years ago

11 Replies

Glaucoma

Is Glaucoma ET symptom or Hydroxy? I was diagnosed with glaucoma in the left eye and wondering if any others have gone down this road. Thank you all.

Is Glaucoma ET symptom or Hydroxy? I was diagnosed with glaucoma in the left eye...

krotsida

•5 years ago

22 Replies

update last blood count

platelets went down further naturally from 446 to 423 - truly baffled and mine blown because with that number i don't fit an mpn criteria. waiting for two...

platelets went down further naturally from 446 to 423 - truly baffled and mine b...

Winterella

•5 years ago

28 Replies

Is this ET symptom or Hydroxy?

Hello all, does anyone with ET experience upper back pain? For the past week or so my upper back ribs have been aching and I'm not sure if it's bone pain or...

Hello all, does anyone with ET experience upper back pain? For the past week or ...

azaelea

•5 years ago

14 Replies

Pressure to return to work

Hi All. I'm getting pressure to return to work. Anyone else having this?

Pat_Swyz

•5 years ago

9 Replies

Light-Headed / Dizzy

Woke up yesterday with an unusual and unrelenting bout of dizziness/light-headedness. I typically have some of this but this new level wont be sustainable. Not...

Woke up yesterday with an unusual and unrelenting bout of dizziness/light-headed...

JT_Marlin

•5 years ago

15 Replies

Shielding updates in England and Northern Ireland (24th June 2020)

The government has announced changes to the shielding guidance in England and Northern Ireland. This is based on evidence that fewer people are now infectious,...

The government has announced changes to the shielding guidance in England and No...

Mazcd

Partner•5 years ago

26 Replies

PV Question

Hello all I have PV for now my treatment has just been Phlebotomy and aspirin. I am experiencing some numbness in my right thumb and middle finger. Is this a...

Hello all I have PV for now my treatment has just been Phlebotomy and aspirin. I...

josup26

•5 years ago

11 Replies

PV or hydroxyurea - increased sensitivity to insect bites?

Hi everyone, I've been feeling increased sensitivity to insect bites and I'm wondering whether it's tied to either PV or Hydroxyurea. Or maybe it's just age....

Hi everyone, I've been feeling increased sensitivity to insect bites and I'm won...

souplover

•5 years ago

3 Replies

ET - medications not working out

Hello - just wondering about ET triple negative... What happens when hydroxy and Pegasus aren’t really working out? Both drugs have required such high doses to...

Hello - just wondering about ET triple negative... What happens when hydroxy and...

intothewoods

•5 years ago

13 Replies

Essential Thombocytosis - Application Form Declaration

Hello I am a 36 year old woman diagnosed in Feb 2019 with JAK2 positive ET. I have worked for the same employer for 14years since graduating and I am...

Hello I am a 36 year old woman diagnosed in Feb 2019 with JAK2 positive ET. I h...

Iregray

•5 years ago

15 Replies

What is MPN/MDS overlap syndrome?

Hi, My diagnosis is MPN/MDS overlap syndrome but I know next nothing about it. My haematology appt. in May was cancelled. Apparently this was diagnosed after...

Hi, My diagnosis is MPN/MDS overlap syndrome but I know next nothing about it. M...

Rokeroar

•5 years ago

10 Replies

Wondering

What dangers lurk out in the big wide world today that won’t be there on 6 July !!! Glad I am judging what’s safe for me not relying on the government . We...

What dangers lurk out in the big wide world today that won’t be there on 6 July ...

Mostew

•5 years ago

21 Replies

ET and approaching 60

I am new to this forum. I was diagnosed with ET with CALR genetic mutation 5 years ago and have been on 75g aspirin per day since then. NHS guidelines say...

I am new to this forum. I was diagnosed with ET with CALR genetic mutation 5 ye...

Freethorpe

•5 years ago

17 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for June 2020

Illuminating novel biological aspects and potential new therapeutic approaches for chronic myeloproliferative malignancies

E T and potassium

Critical illness insurance

Weight gain on hydroxycarbamide

Pre-MF 31yr old

Milburn.

Query

PV and Teaching Amidst Covid

Blood sugar spike

Update 3

Interesting articles effect of lockdown on mental health

What are parents doing for childcare arrangements?

Any MPN/MDS Crossover Syndrome Patients?

PV and Turmeric

Mpn treatment?

Bone Marrow Biopsy insights please

Virtual Clinics

Glaucoma

update last blood count

Is this ET symptom or Hydroxy?

Pressure to return to work

Light-Headed / Dizzy

Shielding updates in England and Northern Ireland (24th June 2020)

PV Question

PV or hydroxyurea - increased sensitivity to insect bites?

ET - medications not working out

Essential Thombocytosis - Application Form Declaration

What is MPN/MDS overlap syndrome?

Wondering

ET and approaching 60

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