Posts - MPN Voice | HealthUnlocked

MPN Voice

10,437 members • 14,387 posts

All posts for September 2019

Interval Between Venesections

Hello everyone. I was diagnosed with PV almost a year ago, my treatment has just been low dose aspirin and venesections (whenever my hemoglobin exceeds 15)....

Hello everyone. I was diagnosed with PV almost a year ago, my treatment has jus...

JP2018

•5 years ago

8 Replies

BUYER BEWARE – NOT ALL CURCUMIN IS REALLY YELLOW...

Post by MPN-MATE Admin » Mon Sep 30, 2019 11:19 am Hey everyone... :-) This is an additional discussion about the use of Curcumin, and in particular, Where...

Post by MPN-MATE Admin » Mon Sep 30, 2019 11:19 am Hey everyone... :-) This ...

socrates_8

•5 years ago

8 Replies

True

😊

Sand-Dancer

•5 years ago

8 Replies

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HOT FLASHES

I never had hot flashes but at 69 I now do. I’m jak2 +, on HU & am either ET or pre-MF. Has anyone else experienced this? Thanks. Katie

I never had hot flashes but at 69 I now do. I’m jak2 +, on HU & am either ET o...

katiewalsh

•5 years ago

12 Replies

I've been bad and it feels good. Curcumin.

My Dr. told me to stop taking curcumin because of interactions with hydroxy and being the semi-obedient patient I did stop for awhile. It's been 2 months...

My Dr. told me to stop taking curcumin because of interactions with hydroxy and ...

h2ogal

•5 years ago

16 Replies

Was my Jakafi dosage lowered inappropriatelyand need to be raised?

I have stage 3 myelofibrosis, I was on 20mg of Ruxolitinib signed up for a study drug Navitoclax and the first thing a P.A did not a hematologist was lower my...

I have stage 3 myelofibrosis, I was on 20mg of Ruxolitinib signed up for a study...

Boriqua

•5 years ago

5 Replies

Diagnosed with PV but normal RBC count

Recently diagnosed with PV (JAK2+) however my blood counts are quite a bit different to others that I see posting here. My RBC count has been normal for as...

Recently diagnosed with PV (JAK2+) however my blood counts are quite a bit diffe...

Fuzzy_Duck

•5 years ago

9 Replies

Stem cell transplant for Myelofibrosis

After 12 years with PV and then 2 years with MF I explained in a letter to my consultant that were the decision to have a transplant entirely mine it is what I...

After 12 years with PV and then 2 years with MF I explained in a letter to my co...

Dodders

•5 years ago

39 Replies

Myelophibrosis and Ruxo

Hi! My mom has MF for 8 years and all of them is on Ruxo, but lately she started to feel worse-spleen has grown bigger (24cm), and she has huge pain,which is...

Hi! My mom has MF for 8 years and all of them is on Ruxo, but lately she started...

markokrist

•5 years ago

11 Replies

Blue badge

Just to update you all. Hello hope you are all feeling ok on this wet and windy weekend. I have been successful in obtaining a blue badge. This will be a...

Just to update you all. Hello hope you are all feeling ok on this wet and windy...

Spirit123

•5 years ago

9 Replies

Just diagnosed with pv

Hi I have just been diagnosed with pv after numerous blood tests over the last month . Still got too have a biopsy in 2 weeks to confirm but my heamo doc says...

Hi I have just been diagnosed with pv after numerous blood tests over the last m...

Dolman

•5 years ago

36 Replies

Just diagnosed with Polycythemia Vera

Hi I have just joined this group for hopefully advice,answers etc as I have just been diagnosed with pv as my red blood cell count was high . I am awaiting for...

Hi I have just joined this group for hopefully advice,answers etc as I have just...

Dolman

•5 years ago

9 Replies

Suprise after blood test

Before I went on holiday last week I had to have my INR blood taken. The result showed a reading of 1.8 whereas my range should be 2.5-3.5 so my blood was too...

Before I went on holiday last week I had to have my INR blood taken. The result...

jillydabrat

•5 years ago

16 Replies

Good looking sunsmart activewear...any ideas?

Hi all. It is spring here in Australia and I realise I am coming up to my first summer whilst taking hydrea ( 2 tabs a day) I have ET. I know I should be...

Hi all. It is spring here in Australia and I realise I am coming up to my first ...

Pollygator

•5 years ago

5 Replies

ET vs. Hydroxy side effects

I am trying to work out whether the major muscle weakness, especially in my legs, is caused by the ET or the treatment. I was pretty fit until recently and...

I am trying to work out whether the major muscle weakness, especially in my legs...

mjn500

•5 years ago

8 Replies

Worth watching re inflammation

Interesting video regarding reducing symptom burden and possibly even slowing progression. https://youtu.be/FzyoPAGTu-U And note the reference to...

Interesting video regarding reducing symptom burden and possibly even slowing pr...

Paul123456

•5 years ago

34 Replies

Muscle pain since starting HU

I started taking HU in Feb 2015. In March 2015 I started getting muscle pain in my mid to upper back on one side. Since then I have more muscle pain than not....

I started taking HU in Feb 2015. In March 2015 I started getting muscle pain in ...

130396

•5 years ago

5 Replies

Anyone with triple negative MF?

If so,what is your current treatment and future treatment plan?

Aneliv9

•5 years ago

17 Replies

Meeting

Hi does anyone know when there’s a meeting in Glasgow and if there’s a number to phone thanks Diana

Hi does anyone know when there’s a meeting in Glasgow and if there’s a number to...

D1i2a3

•5 years ago

1 Reply

PRV

Hi I've not been on for a while when is the next forum in Manchester or about, Cheers Peter. ps I've got prv.

Hi I've not been on for a while when is the next forum in Manchester or about, C...

pedders

•5 years ago

1 Reply

Platelets

Hey guys, I'm 34 years old had routine bloods done as I had a baby 7 weeks ago, doc said all okay except a very slight raise in platelets that will be checked...

Hey guys, I'm 34 years old had routine bloods done as I had a baby 7 weeks ago, ...

Isabellasmummy

•5 years ago

5 Replies

Prefibrotic MF

So, I finally had my appointment with my hematologist to diagnose me after all my test the last two weeks. She says my ET has progressed to prefibrotic MF. She...

So, I finally had my appointment with my hematologist to diagnose me after all m...

Cja1956

•5 years ago

21 Replies

CURCUMIN? – IS IT THE NEXT BEST THING...?

Post by MPN-MATE Admin » Wed Sep 25, 2019 10:29 am Hey all my MPN colleagues & friends... Thought that you might all enjoy a quick scan of this article on...

Post by MPN-MATE Admin » Wed Sep 25, 2019 10:29 am Hey all my MPN colleagues & ...

socrates_8

•5 years ago

36 Replies

CALR Mutation Video

This is a very clear and interesting presentation about genetic mutations in MPNs and in particular about CALR: https://youtu.be/LUDLU72m6hI

This is a very clear and interesting presentation about genetic mutations in MPN...

AndyT

•5 years ago

4 Replies

NEW HOPE FOR AML...

Post by MPN-MATE Admin » Wed Sep 25, 2019 2:05 am Hey everyone... :-) This article is a tad tough to read through because of all the terminologies (jargon)...

Post by MPN-MATE Admin » Wed Sep 25, 2019 2:05 am Hey everyone... :-) This art...

socrates_8

•5 years ago

10 Replies

Travel insurance

Has anyone been able to get travel insurance whilst taking rux or similar and a trial drug?

Has anyone been able to get travel insurance whilst taking rux or similar and a ...

skodaguy

•5 years ago

5 Replies

Safe to take vitamin A with Pv

Can we take vitamin A and D with my condition pv is it safe.

Zar77

•5 years ago

1 Reply

Empowering cancer patients to shift their mindsets could improve care, researchers argue by Cell Press

Post by MPN-MATE Admin » Tue Sep 24, 2019 12:07 pm Sept. 23, 2019 https://www.mpn-mate.com/forum/viewtopic.php?f=3&t=94 "We spend millions of dollars every...

Post by MPN-MATE Admin » Tue Sep 24, 2019 12:07 pm Sept. 23, 2019 https://www.m...

socrates_8

•5 years ago

8 Replies

Referrals

Hi it's my hubby who has MF and we are in the UK . Treatment is okay but his symptoms are progressing and I feel he should see a specialist. As we are I...

Hi it's my hubby who has MF and we are in the UK . Treatment is okay but his sym...

silverunicorn10

•5 years ago

10 Replies

CT scan

Diagnosed with PV last year and take small amount of hydroxy, things have been fairly stable since. But seen a doctor in August who confirmed my spleen was...

Diagnosed with PV last year and take small amount of hydroxy, things have been...

john0084

•5 years ago

5 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for September 2019

Interval Between Venesections

BUYER BEWARE – NOT ALL CURCUMIN IS REALLY YELLOW...

True

HOT FLASHES

I've been bad and it feels good. Curcumin.

Was my Jakafi dosage lowered inappropriatelyand need to be raised?

Diagnosed with PV but normal RBC count

Stem cell transplant for Myelofibrosis

Myelophibrosis and Ruxo

Blue badge

Just diagnosed with pv

Just diagnosed with Polycythemia Vera

Suprise after blood test

Good looking sunsmart activewear...any ideas?

ET vs. Hydroxy side effects

Worth watching re inflammation

Muscle pain since starting HU

Anyone with triple negative MF?

Meeting

PRV

Platelets

Prefibrotic MF

CURCUMIN? – IS IT THE NEXT BEST THING...?

CALR Mutation Video

NEW HOPE FOR AML...

Travel insurance

Safe to take vitamin A with Pv

Empowering cancer patients to shift their mindsets could improve care, researchers argue by Cell Press

Referrals

CT scan

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