Posts - MPN Voice | HealthUnlocked

MPN Voice

10,445 members • 14,398 posts

All posts for December 2023

Happy Christmas!

Wishinng Maz and all the team on MPN Voice , together with all our lovely friends on this forum a very Happy Christmasvand a good 2024 . Fran.🙏🙏🎄🎄

Wishinng Maz and all the team on MPN Voice , together with all our lovely friend...

azaelea

•5 months ago

4 Replies

Just diagnosed with 4.0 cm aneurysm of ascending aorta and severe calcification

Hi Friends I cannot express how shocked and dismayed I am finding out that I have severe calcification of my aorta and a 4.0 cm aneurysm. I have read that...

Hi Friends I cannot express how shocked and dismayed I am finding out that I h...

Wewo01

•5 months ago

10 Replies

COVID

Today I tested positive for the first time. My husband picked it up last Sunday and incubation time only 2 to 3 days. Did anyone with intermediate MF got...

Today I tested positive for the first time. My husband picked it up last Sunday ...

artydutch

•5 months ago

9 Replies

Want to take advantage of all our features? Just log in!

Christmas

Happy Christmas to all members, contributors and medics on this forum. Let’s hope 2024 will be a good year for MPN research. Xx

Happy Christmas to all members, contributors and medics on this forum. Let’s hop...

artydutch

•5 months ago

Be the first to reply

Merry Christmas!

Merry Christmas everyone! Hope everyone has a Happy and Healthy New Year! (Pic is of the Robin my husband has been feeding for about 3 years, haven’t got a...

Merry Christmas everyone! Hope everyone has a Happy and Healthy New Year! (Pic ...

lizzziep

•5 months ago

7 Replies

Amatryptiline use with myelofibrosis advice

Seeking advice please. Have had 2 recent admissions to hospital with high potassium, which resulted in me having gallstones. This follows 4 admissions in...

Seeking advice please. Have had 2 recent admissions to hospital with high potass...

Didgeridoo2

•5 months ago

6 Replies

Update and Besremi associated Ads

Hi all - thought I would give an update from my last note regarding platelet crash while on Besremi 500 ug. Also add some thoughts re AEs I feel associated...

Hi all - thought I would give an update from my last note regarding platelet cra...

gjh8733

•5 months ago

4 Replies

Possible Future Treatment Involves Healing Your Gut

I’ve been wrestling with ET now for 9 years. For the past 3 I’ve had neurological symptoms that make it a bit hard to walk and leaves me feeling dizzy most of...

I’ve been wrestling with ET now for 9 years. For the past 3 I’ve had neurologica...

George1976

•5 months ago

7 Replies

Anyone else out there with both ET & MBL?

In addition to my ET (diagnosed in 2003 and now well controlled on Pegasys) I’ve recently been diagnosed with Monoclonal B-Cell Lymphocytosis (MBL). This...

In addition to my ET (diagnosed in 2003 and now well controlled on Pegasys) I’ve...

AndyT

•5 months ago

2 Replies

toe nail coming off from the bottom

hi everyone I have a very weird question for you I have ET JAK 2 and recently diagnosed with Raynauds syndrome has anyone’s toe nail ever started coming...

hi everyone I have a very weird question for you I have ET JAK 2 and recently d...

Nc3500

•5 months ago

3 Replies

re: 1500mg Hydroxyurea per day

I am a 72 year old male and was Diagnosed with early myelofibrosis after seeing my platelet counts over 1100 and having a bone marrow biopsy. I was put on...

I am a 72 year old male and was Diagnosed with early myelofibrosis after seein...

oglesby

•5 months ago

3 Replies

The time has come

I start taking peg interferon early January. I've not got the greatest haemotologist in the world and he's simply told me to pick up the prescription from the...

I start taking peg interferon early January. I've not got the greatest haemotolo...

conno61

•5 months ago

13 Replies

skin cancer and Ruxo

Hello, all, so interesting thing happened to me yesterday. I’ve been having eye issues for a long time, at least six months, and I finally went to an...

Hello, all, so interesting thing happened to me yesterday. I’ve been having eye ...

Cja1956

•5 months ago

7 Replies

Bone Marrow JAK2 V617F Results

Hello my 22 yo son is under the care of a hematologist since he had aDVST last February. Our journey has been very unclear which I’m finding can be the case...

Hello my 22 yo son is under the care of a hematologist since he had aDVST last F...

Bindi77

•5 months ago

26 Replies

Start of SCT journey

Quick recap for those that haven't followed my previous posts. Diagnosed September 2022 with primary MF, no previous signs or symptoms before catching Covid in...

Quick recap for those that haven't followed my previous posts. Diagnosed Septemb...

Flyingsteamer

•5 months ago

13 Replies

festive wishes

hello people A very quick post to wish all on this wonderful forum a safe and peaceful holiday - thanks as always to Maz + the team for their support to us...

hello people A very quick post to wish all on this wonderful forum a safe and ...

amhann

•5 months ago

6 Replies

Latest blood results showing low Folates

Hello I just got my latest set of results from my recent blood check up and was told that I know have low folate levels and as such my specialist has...

Hello I just got my latest set of results from my recent blood check up and wa...

Shanders

•5 months ago

3 Replies

Update 7.8

Besremi increased to 175mcg on 11/22/23. As of 12/15, HCT is basically stable at 45.4% following two increased doses of Besremi 175mcg. HGB is stable at...

Besremi increased to 175mcg on 11/22/23. As of 12/15, HCT is basically stable a...

hunter5582

•5 months ago

37 Replies

Imetelstat?

I just learned about this drug. There was a study that showed it to be very effective for ET in 2015. https://www.nejm.org/doi/full/10.1056/nejmoa1503479 Why...

I just learned about this drug. There was a study that showed it to be very effe...

yippinurse

•5 months ago

1 Reply

MPN patients in Surrey -meet up

Hi. Denbies Winery cafe on Sunday 14th January 2024 at 10.30 for coffee and chat seems to be a goer for at least a couple of people. I’ll be there, in the...

Hi. Denbies Winery cafe on Sunday 14th January 2024 at 10.30 for coffee and cha...

Gipsy123

•5 months ago

4 Replies

Covid

Just recovering from a very nasty covid bout - my first. I'm a pretty healthy, active 76 year old with no medical issues other than PV. I don't need to take...

Just recovering from a very nasty covid bout - my first. I'm a pretty healthy, a...

saltmarsh

•5 months ago

3 Replies

GP cancelled my free prescriptions as doesn't classify ET as a blood cancer, and even if it was, I'm not recieving ongoing treatment!?

Well Folks, I've got a personal battle to fight with my GP.... Having recently recieved a letter from the NHS Business Services Authority informing me that...

Well Folks, I've got a personal battle to fight with my GP.... Having recently...

anewpath

•5 months ago

25 Replies

Imetelstat Users?

Hi All, I have Myelofibrosis and have been taking Jakavi for about 3 years, and it has been pretty successful in suppressing my symptoms. Unfortunately my...

Hi All, I have Myelofibrosis and have been taking Jakavi for about 3 years, an...

TimGS

•5 months ago

8 Replies

Pain in hip, leg down to shins, ET Jak2 prefibrotic MF

Diagnosed earlier this year with ET Jak2 and Prefibrotic myelofibrosis. Have been in pain since 1st Nov - checked for DVT -nothing - Having MRI of hip on...

Diagnosed earlier this year with ET Jak2 and Prefibrotic myelofibrosis. Have be...

JOL13

•5 months ago

7 Replies

Bone marrow biopsy results.

Today I received the news I was expecting. My PV has progressed to MF. Although the signs have been building up in my blood results for some time, I am...

Today I received the news I was expecting. My PV has progressed to MF. Although ...

MCW22

•5 months ago

25 Replies

To my MPN family!

Wishing you all Merry Christmas and happy New Year. Wishing that the New Year brings us all, good news on new better healing discoveries. Lana

Wishing you all Merry Christmas and happy New Year. Wishing that the New Year b...

light

•5 months ago

10 Replies

Pegasys starting dose for PMF

Hello everyone! I have primary myelofibrosis since February 2021 Doctor put me on Hydroxyurea because of elevated platelets(1700). Now, because of my age(41...

Hello everyone! I have primary myelofibrosis since February 2021 Doctor put me ...

Goldie41

•5 months ago

14 Replies

Anyone near Dorking in Surrey who’d like to meet up?

Hi. I’ve had a diagnosis of PMF for over seven years now, and it looks as tho I’ll need to be based near Dorking, in Surrey ( my family home) for the...

Hi. I’ve had a diagnosis of PMF for over seven years now, and it looks as tho I’...

Gipsy123

•5 months ago

5 Replies

Peg reduction

hi all I’m just giving you a positive post about my Peg intake. I cannot believe that is roughly two yrs since I started Peg and I’m still reducing my dose....

hi all I’m just giving you a positive post about my Peg intake. I cannot believ...

Wyebird

•5 months ago

19 Replies

Shingles injection

Hi iam on peggasy and have p v having shingles jab soon any problems with this thank you

Hi iam on peggasy and have p v having shingles jab soon any problems with this t...

baggies

•5 months ago

3 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for December 2023

Happy Christmas!

Just diagnosed with 4.0 cm aneurysm of ascending aorta and severe calcification

COVID

Christmas

Merry Christmas!

Amatryptiline use with myelofibrosis advice

Update and Besremi associated Ads

Possible Future Treatment Involves Healing Your Gut

Anyone else out there with both ET & MBL?

toe nail coming off from the bottom

re: 1500mg Hydroxyurea per day

The time has come

skin cancer and Ruxo

Bone Marrow JAK2 V617F Results

Start of SCT journey

festive wishes

Latest blood results showing low Folates

Update 7.8

Imetelstat?

MPN patients in Surrey -meet up

Covid

GP cancelled my free prescriptions as doesn't classify ET as a blood cancer, and even if it was, I'm not recieving ongoing treatment!?

Imetelstat Users?

Pain in hip, leg down to shins, ET Jak2 prefibrotic MF

Bone marrow biopsy results.

To my MPN family!

Pegasys starting dose for PMF

Anyone near Dorking in Surrey who’d like to meet up?

Peg reduction

Shingles injection

Search posts

Pinned Posts

Latest poll

What age were you when your MPN was diagnosed?

Topics

Archive