Posts - MPN Voice | HealthUnlocked

MPN Voice

10,722 members • 14,843 posts

All posts for March 2020

Ocular manifestations are common among MPN patients

Thanks to Dr. Hans Hasselbalch and team for this innovative research paper!...

PVReporter

•4 years ago

10 Replies

New Study: Predicted Survival in Polycythemia Vera Patients

Anyone have any of these three mutations tested for? -- This study evaluated the impact of co-occurring mutations and clinical characteristics on prognosis in...

Anyone have any of these three mutations tested for? -- This study evaluated the...

JT_Marlin

•4 years ago

6 Replies

Hair loss ET treatment

hair loss. I am 72 and suffer from ET I took Hydroxycarbamide for six months, various problems plus hair loss. ( Hair loss normalised a few months after...

hair loss. I am 72 and suffer from ET I took Hydroxycarbamide for six months, va...

presto21

•4 years ago

4 Replies

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No more jokes about Coronavirus please

We are currently in a very unsettling and worrying situation with regards to the Coronavirus (COVID-19) outbreak. What we have to remember about the people...

We are currently in a very unsettling and worrying situation with regards to the...

Mazcd

Partner•4 years ago

59 Replies

Response from Consultant regarding upcoming check up

I wrote a post last week regarding my concerns about my upcoming haematology appointment. I couldn't get past the secretary so I decided to write and private...

I wrote a post last week regarding my concerns about my upcoming haematology app...

jillydabrat

•4 years ago

39 Replies

Advice regarding nursing/residential homes

I think we have all seen those poor seniors in lock down in their nursing home in America. This morning advice was given on Good Morning Britain that children...

I think we have all seen those poor seniors in lock down in their nursing home i...

jillydabrat

•4 years ago

6 Replies

PV and Depression

PV and Depression has anyone experienced this? Thanks

rkhabtec

•4 years ago

5 Replies

PV ?MF weight loss and fatigue

Hi all, My mum has PV and has done for about 30 years... recently her normal meds have stopped working and she has been changed to Anegralide. She’s currently...

Hi all, My mum has PV and has done for about 30 years... recently her normal med...

FamilyPV

•4 years ago

15 Replies

HAIR LOSS!!?!!! HELP?!

I am 30 and have been Dx with ET about a year ago I also have grade two bone marrow scarring. I have been on Hydroxyurea and they recently changed the dose to...

I am 30 and have been Dx with ET about a year ago I also have grade two bone mar...

Samiam1920

•4 years ago

15 Replies

Traveling now with coronavirus?

Is anyone cancelling their business trips due to Coronavirus? I have PV and currently am not taking any meds for it, and will be 62 this month. According to...

Is anyone cancelling their business trips due to Coronavirus? I have PV and curr...

Elizka

•4 years ago

10 Replies

Hashimoto's and PV

Hello, I am looking for information about autoimmune diseases like Hashimoto's disease, celiac one, etc and mieloproliferative syndromes and in special...

Hello, I am looking for information about autoimmune diseases like Hashimoto's d...

SoledadBarcelona

•4 years ago

4 Replies

What are the alternative treatments for ET?

I have just been diagnosed in January with ET and the thought of taking a chemotherapy drug terrifies me. My platelet count is 447 which seems borderline to...

I have just been diagnosed in January with ET and the thought of taking a chemot...

Franklyspeaking

•4 years ago

34 Replies

Easy Peasy

Easy to get space around when shopping etc and you don't people coughing and spluttering all over you, just say, in a VERY loud voice that you're just back...

Easy to get space around when shopping etc and you don't people coughing and spl...

lizzziep

•4 years ago

5 Replies

Covid-19

The BBC has been reporting on the risks of Coranavirus in recent days, drawing heavily on the recently published statistics from China....

The BBC has been reporting on the risks of Coranavirus in recent days, drawing h...

Applesnpears

•4 years ago

5 Replies

Erythromelalgia

Hi everyone I’ve written a couple of posts about the pains I was experiencing with my ET - and I called it joint pain (it’s hard to describe but it was...

Hi everyone I’ve written a couple of posts about the pains I was experiencing w...

Wakeboarder

•4 years ago

11 Replies

Here’s another one.Apologies to anyone who is Irish!

Have a good weekend everyone ....X

Loubprv

Volunteer•4 years ago

9 Replies

Another photo to make you laugh. Hopefully.

No comment.

Loubprv

Volunteer•4 years ago

21 Replies

Awaiting surgery with PV

Hi everyone I have Polycythemia diagnosed for just over 3 years and now am well controlled on Ruxoilitinib 15mgs bd and warfarin ( due to DVT and PE prior to...

Hi everyone I have Polycythemia diagnosed for just over 3 years and now am well...

Dianne-Guisborough

•4 years ago

28 Replies

Quick question...

When is a bone marrow biopsy performed? Are there indicators in blood work that would prompt a haematologist to request one?

When is a bone marrow biopsy performed? Are there indicators in blood work that ...

hansyhand

•4 years ago

14 Replies

Polycethemia Vera = Weak Bones

About a month ago I broke my femur. (39 Male) I was being foolish as I was skateboarding in the house, but wasn't going that fast. Anyway, I hit a rubber bump...

About a month ago I broke my femur. (39 Male) I was being foolish as I was skat...

lebowski42

•4 years ago

8 Replies

Run out of anti bac! Here’s the answer

I ve bought every pack in the uk so order from me. £20 a packet. Work a treat on supermarket trolleys, hands and for polishing fruit. ( the last bits a joke)...

I ve bought every pack in the uk so order from me. £20 a packet. Work a treat on...

Loubprv

Volunteer•4 years ago

13 Replies

Polycythemia and Covid19

Hi everyone sorry I haven't been on here for a while but I am doing fine and still am poly Jak2 negative. My Venesections are now 4 weekly from 6 weekly...

Hi everyone sorry I haven't been on here for a while but I am doing fine and sti...

Nozboz

•4 years ago

5 Replies

Mass hysteria, the lack of available face masks, and a great solution!

Rats! I tried to post a video and it wouldn’t work. If you would like a really good laugh then google Union Jack thong face mask you tube. Features a chap in a...

Rats! I tried to post a video and it wouldn’t work. If you would like a really g...

Loubprv

Volunteer•4 years ago

9 Replies

Worrying article but I think you all need to read this

cancerhealth.com The article is called "What people with cancer need to know about the Coronavirus"

cancerhealth.com The article is called "What people with cancer need to know ab...

jillydabrat

•4 years ago

62 Replies

Anyone needing blood transfusions

I do not want to be causing chaos but I have questions about how anyone who is transfusion dependent will be supported if this epidemic becomes really...

I do not want to be causing chaos but I have questions about how anyone who is t...

skodaguy

•4 years ago

4 Replies

First Haematologist appointment

I have my first appointment with a haematologist coming up due to high red cell count on a recent routine blood test. So no diagnosis as yet. Can anyone...

I have my first appointment with a haematologist coming up due to high red cell ...

Poppet2518

•4 years ago

15 Replies

Loss of skin sensation.

I have quite a large area of skin, left hip that suddenly I can’t feel. Although I can’t feel the skin to touch it feels like I have sunburn. Went to my GP,...

I have quite a large area of skin, left hip that suddenly I can’t feel. Although...

Raphael_UK

•4 years ago

11 Replies

How to handle fatigue naturally and symptoms of ET??

Hi all im 32yrs and ET diagnosed 7 months ago with platelets 500-700 fluctuate, i have these episodes of sudden fatigue and numbness cold hand and feet im on...

Hi all im 32yrs and ET diagnosed 7 months ago with platelets 500-700 fluctuate,...

Aojai

•4 years ago

5 Replies

Ropeginterferon superior to Interferon and HU in PV patients

TAKE-HOME MESSAGE In this phase III study and its associated extension study, 257 patients with polycythemia vera (PV) were randomized to receive a...

TAKE-HOME MESSAGE In this phase III study and its associated extension study, 2...

JT_Marlin

•4 years ago

4 Replies

Scared of the Coronavirus

I know there has been concerns raised about the virus already but I am in a quandry. I am due to have my 10 week check up with my Haematologist on the 23rd of...

I know there has been concerns raised about the virus already but I am in a quan...

jillydabrat

•4 years ago

27 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for March 2020

Ocular manifestations are common among MPN patients

New Study: Predicted Survival in Polycythemia Vera Patients

Hair loss ET treatment

No more jokes about Coronavirus please

Response from Consultant regarding upcoming check up

Advice regarding nursing/residential homes

PV and Depression

PV ?MF weight loss and fatigue

HAIR LOSS!!?!!! HELP?!

Traveling now with coronavirus?

Hashimoto's and PV

What are the alternative treatments for ET?

Easy Peasy

Covid-19

Erythromelalgia

Here’s another one.Apologies to anyone who is Irish!

Another photo to make you laugh. Hopefully.

Awaiting surgery with PV

Quick question...

Polycethemia Vera = Weak Bones

Run out of anti bac! Here’s the answer

Polycythemia and Covid19

Mass hysteria, the lack of available face masks, and a great solution!

Worrying article but I think you all need to read this

Anyone needing blood transfusions

First Haematologist appointment

Loss of skin sensation.

How to handle fatigue naturally and symptoms of ET??

Ropeginterferon superior to Interferon and HU in PV patients

Scared of the Coronavirus

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