Posts - MPN Voice | HealthUnlocked

MPN Voice

10,647 members • 14,731 posts

All posts for December 2022

Relief for Liver?

Have ET / JAK which treatment has been interrupted due to very high (4x) liver enzyme values. I have been on 2 mg anagrelide per day for several months with...

Have ET / JAK which treatment has been interrupted due to very high (4x) liver e...

Mishie14

•2 years ago

9 Replies

ET and hydrea

I have ET and after 6 years I stopped taking my Hyderabad 1 year ago because they kept increasing my dose and was upsetting my stomach.

I have ET and after 6 years I stopped taking my Hyderabad 1 year ago because the...

Silveryeam2

•2 years ago

7 Replies

ET , newly diagnosed and have a couple of questions.

Hi. I'm was diagnosed with ET - Calr in October 22 (female aged 52) (taking Asprin), I had gone to my gp in Dec 21 as I found out my blood pressure was though...

Hi. I'm was diagnosed with ET - Calr in October 22 (female aged 52) (taking Aspr...

Cat_lady52

•2 years ago

19 Replies

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

Increased wbc

I have ET and had lab tests yesterday. My platelets are at 584000 and my wbcs are up to 9500. I take hydroxyurea once a day, have been for 2 years. This is the...

I have ET and had lab tests yesterday. My platelets are at 584000 and my wbcs ar...

Whitehair51

•2 years ago

3 Replies

would it matter if

hi everyone, we are spending Xmas in Italy for a couple of days, and just wondering…..if our flight back hits and cancellations coming back, would it matter if...

hi everyone, we are spending Xmas in Italy for a couple of days, and just wonder...

Yvette49

•2 years ago

7 Replies

Further booster jabs - I'm confused.

Hi all, Today I received an email from the NHS asking me to go for a further booster jab saying " Our records indicate that you have not been vaccinated yet...

Hi all, Today I received an email from the NHS asking me to go for a further bo...

MarkD6701

•2 years ago

13 Replies

Update on possible transformation to M f

After worrying all night about what the clinical specialist nurse said to me yesterday I phoned back this morning for clarification. She said maybe she...

After worrying all night about what the clinical specialist nurse said to me yes...

lizzziep

•2 years ago

4 Replies

Looking for ET patients, post 15 mark

I am 52, a mother of a high school senior, and two in their early college years. Might sound old to some, but in my mind, I am hopeful of living long enough...

I am 52, a mother of a high school senior, and two in their early college years....

JenngeetingR828

•2 years ago

51 Replies

New Type of Jak inhibitor

There is a 2nd generation Type 2 Jak-i. This is two ways better than Rux in concept which is only 1st gen type 1. Mouse studies have shown it is lots better...

There is a 2nd generation Type 2 Jak-i. This is two ways better than Rux in con...

EPguy

•2 years ago

6 Replies

Sample from ASH 2022, CALR antibody

Progress on the immune therapy we've discussed: "In a mouse model of essential thrombocythemia, INCA033989 selectively decreased levels of mutant...

Progress on the immune therapy we've discussed: "In a mouse model of essential ...

EPguy

•2 years ago

1 Reply

MPN's and afib

Hi, Hi, I'm curious if anyone has had afib after you were dx with an MPN? I had it for the first time on December 1. Besremi was ruled out as the cause,...

Hi, Hi, I'm curious if anyone has had afib after you were dx with an MPN? ...

Elizka

•2 years ago

7 Replies

Thrombosis score

Is there such a thing as a thrombosis score? I see it mentioned in the odd article? If so what affects this risk. I have a follow up appointment next week....

Is there such a thing as a thrombosis score? I see it mentioned in the odd artic...

artydutch

•2 years ago

2 Replies

Possible transformation to MF?

I’ve spoken with the specialist nurse from haematology this morning, my iron infusion has helped my anaemia but the consultant wants me to have another bmb...

I’ve spoken with the specialist nurse from haematology this morning, my iron inf...

lizzziep

•2 years ago

26 Replies

Future treatment to cure Cancer

This is may become the future treatment to cure cancer un form tumor or hematology use our own CAR -T

This is may become the future treatment to cure cancer un form tumor or hematolo...

william-Indo

•2 years ago

5 Replies

ASH ( American Society for Hematology) conference

https://youtu.be/SnF1AEuxqQM This is the roundtable discussion about MPNs from this year’s ASH. Big haematology conference in the USA. Good stuff on MF drugs...

https://youtu.be/SnF1AEuxqQM This is the roundtable discussion about MPNs from...

Rachelthepotter

•2 years ago

6 Replies

Possibly not an ET symptom but thought I would ask :)

Hi everyone, I thought this place would be a good place to ask as it's a wealth of knowledge 😊 and it might be ET related or not. I have never experienced...

Hi everyone, I thought this place would be a good place to ask as it's a wealth ...

EmeraldA

•2 years ago

29 Replies

Has anyone [else] on Besremi had issues with elevated serum potassium?

My last several chemistry labs have had elevated Potassium levels and my diet hadn't really changed except for adding Curcumin TID... Now my MPN MD has me on...

My last several chemistry labs have had elevated Potassium levels and my diet ha...

PhysAssist

•2 years ago

11 Replies

myelofibrosis

I'm really really struggling with my new diagnosis of mf and the watch and wait approach,I am continually tired with no energy, what do others do to overcome...

I'm really really struggling with my new diagnosis of mf and the watch and wait ...

glyndale

•2 years ago

45 Replies

et diagnoses age 30

hi all I’ve been diagnosed with ET after ongoing tests from July confirmed with a BmB I didn’t have the gene but still awaiting mutation result my question is...

hi all I’ve been diagnosed with ET after ongoing tests from July confirmed with ...

Bracken2022

•2 years ago

6 Replies

Astonishing' Results: Skip Salvage Chemo,Go Straight to HSCT

»NEW ORLEANS — Investigators confessed to being "astonished" by results of a randomized trial showing that patients with acute myeloid leukemia who have a...

»NEW ORLEANS — Investigators confessed to being "astonished" by results of a ra...

Manouche

•2 years ago

1 Reply

Hydroxycarbamide long term

Hi I have taken Hydroxycarbamide for 16 years. I started very soon after being diagnosed with PV at age 51 and take 1000mgs per day. My blood results have...

Hi I have taken Hydroxycarbamide for 16 years. I started very soon after being ...

Wesleygrange2a

•2 years ago

17 Replies

nausea feeling but in throat

just wanted to ask, over the last couple of days I have a ‘sicky feeling’ but in my throat. It’s like any food I have eaten has not gone down and is stuck in...

just wanted to ask, over the last couple of days I have a ‘sicky feeling’ but in...

Grendall

•2 years ago

10 Replies

pro-drug Curcumin shows clinical potential

Dear Fellow MPN patients, as someone who has been taking a Curcumin supplement for more than 3 years, I was encouraged to come across this research by Kyoto...

Dear Fellow MPN patients, as someone who has been taking a Curcumin supplement f...

welshhuw

•2 years ago

2 Replies

Peg upped

Hi I started taken Peg 4tmg in October. My platelets are up again so I am have my peg upped to 90mg. When I took my first peg 45 I was ill for 2 days.Has...

Hi I started taken Peg 4tmg in October. My platelets are up again so I am have m...

JeniMac

•2 years ago

11 Replies

Hydroxyurea

Does this medication help shrink spleen

Rainyday22

•2 years ago

2 Replies

Weight gain on Hydroxycarbamide

Greeting all, I'm 70 and had my first colonoscopy last week. It revealed a redundant/tortuous colon with significant looping, but no polyps. It was a...

Greeting all, I'm 70 and had my first colonoscopy last week. It revealed a re...

Hidden

•2 years ago

4 Replies

Scared - warm hospital to cold house

My partner John has now been in hospital for 18 days. He first went into Resuscitation for two days - after I called for an ambulance. The morning after a...

My partner John has now been in hospital for 18 days. He first went into Resusc...

MaggieSylvie

•2 years ago

13 Replies

Combo Rux + Peg for MF pts.

https://twitter.com/RaajitRampal/status/1601672354266222594?t=h9CV8zlpBH5pkFqNLlLCyw&s=19 This combo of Rux and Peg also to treating MF with good outcome

https://twitter.com/RaajitRampal/status/1601672354266222594?t=h9CV8zlpBH5pkFqNLl...

william-Indo

•2 years ago

Be the first to reply

Prescription denied • Pegasys 180MCG

Insurance denied my Hematologists request so I asked him to appeal it. Waiting to hear back. I’m in the U.S. Not giving up yet. For anyone one taking Pegasys,...

Insurance denied my Hematologists request so I asked him to appeal it. Waiting t...

Zeppelin11

•2 years ago

9 Replies

Online calculator for MF

this is online calculator for MF came from oral presentation at the AHSS 2022

william-Indo

•2 years ago

5 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for December 2022

Relief for Liver?

ET and hydrea

ET , newly diagnosed and have a couple of questions.

Increased wbc

would it matter if

Further booster jabs - I'm confused.

Update on possible transformation to M f

Looking for ET patients, post 15 mark

New Type of Jak inhibitor

Sample from ASH 2022, CALR antibody

MPN's and afib

Thrombosis score

Possible transformation to MF?

Future treatment to cure Cancer

ASH ( American Society for Hematology) conference

Possibly not an ET symptom but thought I would ask :)

Has anyone [else] on Besremi had issues with elevated serum potassium?

myelofibrosis

et diagnoses age 30

Astonishing' Results: Skip Salvage Chemo,Go Straight to HSCT

Hydroxycarbamide long term

nausea feeling but in throat

pro-drug Curcumin shows clinical potential

Peg upped

Hydroxyurea

Weight gain on Hydroxycarbamide

Scared - warm hospital to cold house

Combo Rux + Peg for MF pts.

Prescription denied • Pegasys 180MCG

Online calculator for MF

Search posts

Pinned Posts

Latest poll

What age were you when your MPN was diagnosed?

Topics

Archive