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MPN Voice

10,445 members • 14,398 posts

All posts for November 2019

Alternative treatments for Busulfan

My wife was diagnosed with E.T. five and half years ago, she is 78 and lives in the UK. At the time, the main treatments were Hydroxycarbamide, followed by...

My wife was diagnosed with E.T. five and half years ago, she is 78 and lives in ...

Folly41

•4 years ago

5 Replies

Contact

I have recently been diagnosed with ET and feeling rather bewildered and alone, since it's a very rare condition I don't know anyone to talk with. I would be...

I have recently been diagnosed with ET and feeling rather bewildered and alone, ...

Simris

•4 years ago

14 Replies

Contact

69 years of age, just recently been diagnosed with ET, feeling very bewildered and alone with all this. Since very rare condition and don't know of anyone else...

69 years of age, just recently been diagnosed with ET, feeling very bewildered a...

Simris

•4 years ago

35 Replies

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In for long haul

Hi. Good morning everyone. I was diagnosed JK2 neg and Carl positive 4 years ago. Hydroxy 1500 mgms 5x3 Mon - Fri 2x1 Sat 1x1 Sun Plus 75mg aspirin daily...

Hi. Good morning everyone. I was diagnosed JK2 neg and Carl positive 4 years ago...

Lynne-G

•4 years ago

4 Replies

Interferon and Hydroxea

I visited an ET specialist who has recommended I keep waiting for Interferon to kick in ( I’ve been injecting for six months with limited results) and add in...

I visited an ET specialist who has recommended I keep waiting for Interferon to ...

Charlieapple2018

•4 years ago

3 Replies

Changes in exercise frequency and cardiovascular outcomes in older adults

Post by MPN-MATE Admin » Wed Nov 20, 2019 11:28 pm Hey everyone... :D When important studies such as this one point to so many positive outcomes, I simply...

Post by MPN-MATE Admin » Wed Nov 20, 2019 11:28 pm Hey everyone... :D When i...

socrates_8

•4 years ago

2 Replies

curcumin and ET Jak 2+

I have read many recent articles on curcumin (tumeric) saying that it has a positive effect on platelets and somewhat inhibits their proliferation. However,...

I have read many recent articles on curcumin (tumeric) saying that it has a pos...

milw532

•4 years ago

28 Replies

PV commercials on national TV

I am somewhat shocked at seeing PV commercials on national TV. The condition is not well known. Many nurses are unaware of it. The only explanation I can...

I am somewhat shocked at seeing PV commercials on national TV. The condition is...

MPN123

•4 years ago

26 Replies

A post-diagnosis reflection....

Hi everyone out there! And thank you for sharing all this info. It's been a life saver for me in my first two months post-diagnosis. My reaction to my...

Hi everyone out there! And thank you for sharing all this info. It's been a lif...

Bohus

•4 years ago

4 Replies

Weight gain on Hydroxyurea

Has anyone else had weight gain while taking Hydroxyurea? I have been on it 10 months and have gained 10 pounds. When I first started taking the drug I felt...

Has anyone else had weight gain while taking Hydroxyurea? I have been on it 10 ...

Cookiebaker

•4 years ago

16 Replies

Does Stress cause these outbreaks

Hi my MPN family. Those of you who are familiar with my posts know that I have problems with my family. The latest story happened two weeks ago when my...

Hi my MPN family. Those of you who are familiar with my posts know that I have p...

jillydabrat

•4 years ago

26 Replies

Yesterdays Living with MPNs day

Just had to say a huge thank you to everyone involved in yesterdays MPN Patient day in London. Maz and Nona for all their hard work yet again and not least...

Just had to say a huge thank you to everyone involved in yesterdays MPN Patient...

Sand-Dancer

•4 years ago

10 Replies

Et symptoms

Hi all... I was diagnosed with ET Jac2 + in April this year.... I had a one marrow biopsy done 3 weeks ago and have an appointment tomorrow to find out my...

Hi all... I was diagnosed with ET Jac2 + in April this year.... I had a one mar...

Dazakella2010

•4 years ago

5 Replies

Wonderful Living with MPN’s day

A huge Thank you to everyone who made the MPN Voice day possible yesterday. It was a real struggle for us to be able to attend due to work commitments,...

A huge Thank you to everyone who made the MPN Voice day possible yesterday. It w...

JojoWonder

•4 years ago

4 Replies

Earthquake on the way!

Encouraging video, discovering JAK2 was last big MPN earthquake and not a great deal has happened since then. However, according to this expert, we may get...

Encouraging video, discovering JAK2 was last big MPN earthquake and not a great ...

Paul123456

•4 years ago

9 Replies

Living With MPNs Day - London

Saturday’s forum in London was very good and it will be well worth looking up any videos that might be published for your own specific conditions, as well as...

Saturday’s forum in London was very good and it will be well worth looking up a...

MFBMT2011

•4 years ago

5 Replies

Dental crown

Hi there folks. My first post. All a bit scary isn’t it once you join but so nice to know so many of you out there in similar position and we can all support...

Hi there folks. My first post. All a bit scary isn’t it once you join but so nic...

Hopetohelp

•4 years ago

24 Replies

Thank you to everyone who helped organise the MPN day in London today

Hi. I couldn’t get to the big meeting on London today, but I managed to pick up the live stream of Reuben Mesa’s summing up at the end. I’m not sure how much...

Hi. I couldn’t get to the big meeting on London today, but I managed to pick up...

Rachelthepotter

•4 years ago

3 Replies

variation in JAK 2 platelet count

How much change from time to time (over 6-8 months ) can occur without being alarming? My platelet count has been 570, 582, 604 over the last many months. I...

How much change from time to time (over 6-8 months ) can occur without being al...

milw532

•4 years ago

11 Replies

Pre Ash summary from the Prof

https://www.vjhemonc.com/video/d5nz8j49lwe-mpns-looking-to-ash-2019/

Paul123456

•4 years ago

3 Replies

No fear and so grateful for Mutation diagnoses

So for the past eight years since starting treatment for ET I was in chronic all over skeletal pain also neurological (all from medication as I had NO pain...

So for the past eight years since starting treatment for ET I was in chronic all...

StreetPastor

•4 years ago

26 Replies

Body symmetry

Hi . Im 18 years old male. I think that half of my body (bilaterally) has normal growth while the other half has a slight retarded growth ( like ribcage, some...

Hi . Im 18 years old male. I think that half of my body (bilaterally) has norma...

Nobody2001

•4 years ago

3 Replies

Hu journey

Well platelets have gone down ..by...4 so not much. At least they haven't gone up. My HU has increased to 13 tablets a week .. back in a month. So I now stand...

Well platelets have gone down ..by...4 so not much. At least they haven't gone ...

heathermc

•4 years ago

4 Replies

CBD Oil

Hello All Has anyone used or thought of using CBD oil please? If so what for? Thoughts please? Thank you x

Hello All Has anyone used or thought of using CBD oil please? If so what for? T...

Mich10

•4 years ago

51 Replies

Hello

Hello my name is Melanie ... I am new and was diagnosed with ET Jack 2 positive ..started hydroxycarbomide..March 2019. I feel ok most of the time ...have a...

Hello my name is Melanie ... I am new and was diagnosed with ET Jack 2 positive ...

Melanie66

•4 years ago

15 Replies

Pegasys update

So after 8 weeks on 45 Mcg Pegasys my platelets are down to 420. Pre starting Peg they were at 820. Not an easy journey starting the meds but a whole lot...

So after 8 weeks on 45 Mcg Pegasys my platelets are down to 420. Pre starting Pe...

Graham7694

•4 years ago

11 Replies

Self monitoring / testing of HGB / HCT ?

Does anyone here use any sort of home testing devices to monitoring your own blood levels? I have been trying to associate my symptoms with elevated counts...

Does anyone here use any sort of home testing devices to monitoring your own blo...

jon1972

•4 years ago

5 Replies

Researchers examine the metabolic effects of an oral blood cancer drug ~ RUXOLITINIB (Jakafi)

Post by MPN-MATE Admin » Wed Nov 13, 2019 11:14 am NOV. 12, 2019 Researchers examine the metabolic effects of an oral blood cancer drug... by The Mount...

Post by MPN-MATE Admin » Wed Nov 13, 2019 11:14 am NOV. 12, 2019 Researchers ex...

socrates_8

•4 years ago

2 Replies

Bruising

Had my monthly blood test at Drs. Don't usually bruise but today really bad bruising from where she took blood. I know it's common but normally only get a red...

Had my monthly blood test at Drs. Don't usually bruise but today really bad brui...

heathermc

•4 years ago

9 Replies

Hypertension meds with Pv

Hi everyone, I was wondering if most people with PV also have high blood pressure and if so, which medication works well? My husband is 41, diagnosed in 2016...

Hi everyone, I was wondering if most people with PV also have high blood pressur...

Pinkandgreen

•4 years ago

9 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for November 2019

Alternative treatments for Busulfan

Contact

Contact

In for long haul

Interferon and Hydroxea

Changes in exercise frequency and cardiovascular outcomes in older adults

curcumin and ET Jak 2+

PV commercials on national TV

A post-diagnosis reflection....

Weight gain on Hydroxyurea

Does Stress cause these outbreaks

Yesterdays Living with MPNs day

Et symptoms

Wonderful Living with MPN’s day

Earthquake on the way!

Living With MPNs Day - London

Dental crown

Thank you to everyone who helped organise the MPN day in London today

variation in JAK 2 platelet count

Pre Ash summary from the Prof

No fear and so grateful for Mutation diagnoses

Body symmetry

Hu journey

CBD Oil

Hello

Pegasys update

Self monitoring / testing of HGB / HCT ?

Researchers examine the metabolic effects of an oral blood cancer drug ~ RUXOLITINIB (Jakafi)

Bruising

Hypertension meds with Pv

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