Posts - MPN Voice | HealthUnlocked

MPN Voice

10,435 members • 14,382 posts

All posts for August 2019

Polycythemia unknown cause - Male 27y

Hello, I'm 27 year old male from Slovenia and only recently after a check-up for work have been referred to a hematologist because my hematocrit and...

Hello, I'm 27 year old male from Slovenia and only recently after a check-up fo...

rejvvv

•5 years ago

2 Replies

Low platelets

I've got ET like many of you . I was wondering though if there is a similar forum for very low platelet count? I've got a friend whose mum has this . I know...

I've got ET like many of you . I was wondering though if there is a similar foru...

carlyjo

•5 years ago

6 Replies

Researchers find a potential new combination therapy against a rare disease

by MPN-MATE Admin » Thu Aug 29, 2019 1:01 am Hey everyone this is a slightly older article, however, it definitely holds some interest for me as someone with...

by MPN-MATE Admin » Thu Aug 29, 2019 1:01 am Hey everyone this is a slightly old...

socrates_8

•5 years ago

6 Replies

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High platelets

Hi there. I was given a blood test 3 weeks ago from my mental health doctor, I have depression and anxiety. It came back with high platelets at 481. For about...

Hi there. I was given a blood test 3 weeks ago from my mental health doctor, I h...

Cutiepiesw

•5 years ago

17 Replies

Alternate Day Fasting Improves Physiological and Molecular Markers of Aging in Healthy, Non-obese Humans

Post by MPN-MATE Admin » Wed Aug 28, 2019 11:25 am Evening all from a beautiful sunny day in Sydney... :-) As a follow up to a previous message concerning...

Post by MPN-MATE Admin » Wed Aug 28, 2019 11:25 am Evening all from a beautifu...

socrates_8

•5 years ago

8 Replies

How do you cope with family indifference?

Hi my MPN family. To understand my question you will first have to understand my story. I have never been close to my siblings because of the way they treated...

Hi my MPN family. To understand my question you will first have to understand my...

jillydabrat

•5 years ago

28 Replies

Confusion about massage

Hi everyone, Have asked previously about if massages are safe to have and the general view was that most would be wary about having them although I know a few...

Hi everyone, Have asked previously about if massages are safe to have and the ge...

Pippa63

•5 years ago

19 Replies

Stabbing Pains

Hello, I’m new to the group. I’m trying to understand the pain I’m experiencing and to see if anyone else experiences the same type. I have ET and possible MF...

Hello, I’m new to the group. I’m trying to understand the pain I’m experiencing ...

StillaBuckeye

•5 years ago

5 Replies

Help we’re you need it most .

Hello everyone can I just say thanks to you all who replied to my post .I haven’t been on hear for a while and what a lovely group this is it’s so good to have...

Hello everyone can I just say thanks to you all who replied to my post .I haven’...

Angeltwin

•5 years ago

1 Reply

Mouth sores

My partner (post ET MF) is suffering with bad sores on his tongue. He also has fluid build up in his legs and abdomen and is very fatigued. Looking for advice...

My partner (post ET MF) is suffering with bad sores on his tongue. He also has f...

Goldfish212

•5 years ago

2 Replies

Anyone heard of fenbendazole

Has anyone heard of fenbendazole. There have been articles about it being a cure for cancer. It is actually sold for de-worming pets. I did read that is can...

Has anyone heard of fenbendazole. There have been articles about it being a cure...

ccsial

•5 years ago

1 Reply

SMILING & BEING POSITIVELY PROACTIVE INCREASES LONGEVITY... ;-)

New evidence that optimists live longer Post by MPN-MATE Admin » Tue Aug 27, 2019 5:48 am Hey everyone... Well, I guess that this might not be a...

New evidence that optimists live longer Post by MPN-MATE Admin » Tue Aug 27, 20...

socrates_8

•5 years ago

5 Replies

Hair

Hello I was wondering if anyone taking hydroxy have there hair gone thin ? I have ET calar have been on hydroxy for about 8 months now and my hair has gone...

Hello I was wondering if anyone taking hydroxy have there hair gone thin ? I hav...

Angeltwin

•5 years ago

50 Replies

Elevated platelets and feeling poorly all the time

Hello! I'm new here and took me a long time to write but I simply don't know what to do anymore. I don't even know I'm writing to the proper forum. First, let...

Hello! I'm new here and took me a long time to write but I simply don't know wha...

Jade0306

•5 years ago

23 Replies

Researchers discover that fasting reduces inflammation and improves chronic inflammatory diseases

Morning all from not so sunny Sydney... Following on from previous articles concerning Anti-Inflammatory Diets and the benefits of "FASTING" please the link...

Morning all from not so sunny Sydney... Following on from previous articles conc...

socrates_8

•5 years ago

11 Replies

Interferon and ears!

This is probably a daft question but is there any link with interferon and eustachian tube dysfunction?

This is probably a daft question but is there any link with interferon and eusta...

hansyhand

•5 years ago

4 Replies

Hydroxy effecting Haemoglobin and RBC

Age 35 Taking Hydroxy since 1.7 years Last 4 weeks taking Hydroxy : 6500/week (1500+ 1000+ 1500 + 1000+1500 off off) for last 2 weeks) JAK 2 negative...

Age 35 Taking Hydroxy since 1.7 years Last 4 weeks taking Hydroxy : 6500/week (...

MrThara

•5 years ago

3 Replies

Curious

Can anyone help me with why different countries treat MPNs so differently? If I am correct USA treat ET with meds as soon as platelets rise over 450 yet in...

Can anyone help me with why different countries treat MPNs so differently? If I ...

Mich10

•5 years ago

30 Replies

Petachie

My partner, (having a difficult time since diagnosis this year) has. post ET myelofibrosis. He has endured several chest infections which led to pnuemonia,...

My partner, (having a difficult time since diagnosis this year) has. post ET mye...

Goldfish212

•5 years ago

3 Replies

Turmeric

Does turmeric really lower platelets in ET patients?

Meeileem

•5 years ago

22 Replies

Ketogenic Diets Benefit Cancer Patients

Post by MPN-MATE Admin » Fri Aug 23, 2019 2:43 Hey guys... :-) For all of you interested in a Ketogenic Diet & some of the many benefits of including some...

Post by MPN-MATE Admin » Fri Aug 23, 2019 2:43 Hey guys... :-) For all of you...

socrates_8

•5 years ago

9 Replies

Pegasys - possibly closer to slowing progression than anything else?

Hopefully this is not an irresponsible header since may raise false hopes, especially for those who can not tolerate Pegasys. However the quote is from a...

Hopefully this is not an irresponsible header since may raise false hopes, espec...

Paul123456

•5 years ago

17 Replies

My update, for mouth sores test.

Hi all, I saw the oncologist yesterday, and after testing where my mouth sores were coming from, over the past two months, they took me off Hydroxycarbomide...

Hi all, I saw the oncologist yesterday, and after testing where my mouth sores w...

Yvette49

•5 years ago

10 Replies

Is itching caused by heavy metal toxicity

I am ETJAK2+ and don't suffer with itching so can't speak from experience but I am wondering could this itching some MPNers are suffering from be caused by...

I am ETJAK2+ and don't suffer with itching so can't speak from experience but I ...

Searcher56

•5 years ago

12 Replies

Any success with turmeric? Or anti inflammatory diet?

I was diagnosed with ET cal/R last February when I had a TIA episode, otherwise very healthy. Was wondering if any one has tried turmeric or other supplements...

I was diagnosed with ET cal/R last February when I had a TIA episode, otherwise ...

Teresa-E

•5 years ago

21 Replies

Pegasys, does it work for you ?

Hi ET peeps. I am on this forum from my son who was diagnosed with ET after a stroke at age 10 . he has been treated with Hydroxyurea untill last year when we...

Hi ET peeps. I am on this forum from my son who was diagnosed with ET after a s...

Louforjack

•5 years ago

9 Replies

For my blood brothers and sisters

😘

Sand-Dancer

•5 years ago

5 Replies

Liver lesion

Hi all... I was diagnosed with jak2 + and ET in March... my platelets were 621 but I have had a constant headache for 6 months... my haematologist started me...

Hi all... I was diagnosed with jak2 + and ET in March... my platelets were 621 ...

Dazakella2010

•5 years ago

18 Replies

Potential New MF Drug

CPI-0610 Demonstrates Activity in Patients With Myelofibrosis After Ruxolitinib Failure Post by socrates_8 » Tue Aug 20, 2019 7:43 am Morning everyone,...

CPI-0610 Demonstrates Activity in Patients With Myelofibrosis After Ruxolitinib ...

socrates_8

•5 years ago

6 Replies

MPN Voice needs your feedback to support an application to the Scottish Medicines Consortium (SMC)

We URGENTLY need your help and feedback to support an application to the Scottish Medicines Consortium (SMC) for the prescribing of Ruxolitinib (Jakavi)...

We URGENTLY need your help and feedback to support an application to the Scottis...

Mazcd

Partner•5 years ago

16 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for August 2019

Polycythemia unknown cause - Male 27y

Low platelets

Researchers find a potential new combination therapy against a rare disease

High platelets

Alternate Day Fasting Improves Physiological and Molecular Markers of Aging in Healthy, Non-obese Humans

How do you cope with family indifference?

Confusion about massage

Stabbing Pains

Help we’re you need it most .

Mouth sores

Anyone heard of fenbendazole

SMILING & BEING POSITIVELY PROACTIVE INCREASES LONGEVITY... ;-)

Hair

Elevated platelets and feeling poorly all the time

Researchers discover that fasting reduces inflammation and improves chronic inflammatory diseases

Interferon and ears!

Hydroxy effecting Haemoglobin and RBC

Curious

Petachie

Turmeric

Ketogenic Diets Benefit Cancer Patients

Pegasys - possibly closer to slowing progression than anything else?

My update, for mouth sores test.

Is itching caused by heavy metal toxicity

Any success with turmeric? Or anti inflammatory diet?

Pegasys, does it work for you ?

For my blood brothers and sisters

Liver lesion

Potential New MF Drug

MPN Voice needs your feedback to support an application to the Scottish Medicines Consortium (SMC)

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