Posts - MPN Voice | HealthUnlocked

MPN Voice

10,497 members • 14,485 posts

All posts for May 2023

Eyes and Chemotherapy

Hi All, After reading Polly PV post regarding her Eye issues, I have decided to write my issues! I started out with ET five years ago some 3 months later MF...

Hi All, After reading Polly PV post regarding her Eye issues, I have decided t...

pontygirl

•1 year ago

25 Replies

PV diagnosed in Jan 2023

diagnosed with PV just after my 33rd birthday earlier this year in January. Still getting my head around it. Married father of a 2 year old daughter and...

diagnosed with PV just after my 33rd birthday earlier this year in January. Stil...

Aussiesam

•1 year ago

21 Replies

Blood "thinness" test

Are there any members whose Dr checks for blood thick/thin-ness? Many supplements can thin blood, so for those on aspirin it could be additive. My Dr is ok...

Are there any members whose Dr checks for blood thick/thin-ness? Many supplemen...

EPguy

•1 year ago

9 Replies

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Another fresh Rux trial, RuxoBeat

This is a small phase 2b trial I've mentioned. It's at only 6 months, they plan to continue since it is getting good results....

This is a small phase 2b trial I've mentioned. It's at only 6 months, they plan...

EPguy

•1 year ago

4 Replies

Rux Experience at 5 weeks

Started Rux at 10mg twice daily 5 weeks ago after MPN specialist suggested it might help with my non-specific symptoms she thinks may be related to my Type 2...

Started Rux at 10mg twice daily 5 weeks ago after MPN specialist suggested it mi...

George1976

•1 year ago

5 Replies

Specialist in MPN + Neurology?

Hello all, I'm looking for an MPN specialist who might also have some experence in Neurology. I'm willing to travel pretty much anywhere in the US. Any...

Hello all, I'm looking for an MPN specialist who might also have some experence...

George1976

•1 year ago

8 Replies

Another attempt

https://www.birmingham.ac.uk/news/2023/incurable-blood-cancer-trial-finds-new-drug-better-than-existing-treatments

https://www.birmingham.ac.uk/news/2023/incurable-blood-cancer-trial-finds-new-dr...

JP1952

•1 year ago

12 Replies

Good news on Rux

https://www.birmingham.ac.uk/news/2023/incurable-blood-cancer-trial-finds-new-drug-better-than-existing-treatmentsSaw this on Twitter. I could actually...

https://www.birmingham.ac.uk/news/2023/incurable-blood-cancer-trial-finds-new-dr...

JP1952

•1 year ago

1 Reply

Royal Marsden Hospital Sutton - anyone else being treated there?

Hi I have primary myelofibrosis, still on rux 15 mg twice a day. Don’t seem to qualify for any of the other meds, 🙁 and I’m getting by with blood...

Hi I have primary myelofibrosis, still on rux 15 mg twice a day. Don’t seem to ...

Gipsy123

•1 year ago

1 Reply

pseudohyperkalemia

update from recent doctor discussion. She agreed we proved Pseudohyperkalemia. This week’s blood testing adventure again triggered unnecessary attention but...

update from recent doctor discussion. She agreed we proved Pseudohyperkalemia. ...

Mishie14

•1 year ago

5 Replies

My new Rux journey

See end for reason for the image. -- I've been on Rux for just over a month. As posted I switched from Bes after the IFN and Flu Vax blew up on me. I'm at...

See end for reason for the image. -- I've been on Rux for just over a month. ...

EPguy

•1 year ago

11 Replies

NAC and Glutathione, and my reaction

There have been numerous posts of these supplements. It's supposed to have benefits, and NAC is being trialed now for MPNs. NAC is converted to Glut in the...

There have been numerous posts of these supplements. It's supposed to have bene...

EPguy

•1 year ago

28 Replies

Ruxolitinib Versus Best Available Therapy for Polycythemia Vera posted by Manouche

Manouche posted the very new Majic-PV trial. Some thoughts (sorry it's not better organized, I'm not top of my game these days): Rux is looking similar to...

Manouche posted the very new Majic-PV trial. Some thoughts (sorry it's not bett...

EPguy

•1 year ago

6 Replies

HU resistance and bad outcomes

We've discussed in some posts comments from Drs. Harrison and Gotlib on the high risk for pts intolerant/resistant to HU. 5-7 X higher risk of transformation...

We've discussed in some posts comments from Drs. Harrison and Gotlib on the high...

EPguy

•1 year ago

3 Replies

Ultrasound Results

I have PV and had a routine ultrasound to check my liver and spleen. I am waiting for a call back from the doctor to review the results. In the meantime… has...

I have PV and had a routine ultrasound to check my liver and spleen. I am waitin...

Sheena2020

•1 year ago

13 Replies

bad itch and body rash

I am a 79 year old female UK. I’ve posted first of all when I was diagnosed about 1 year ago. I have ET and BmB confirmed this. I live in Paisley, Scotland...

I am a 79 year old female UK. I’ve posted first of all when I was diagnosed abo...

Hannah2308

•1 year ago

24 Replies

forum Antrim and Belfast

Good afternoon, I would like to say how terribly disappointed I am that Antrim and Belfast forum has had to be cancelled, I was diagnosed October 2019 and...

Good afternoon, I would like to say how terribly disappointed I am that Antri...

Simris

•1 year ago

4 Replies

Hydrea hair

Hi folks, I've been on 500 mg of Hydrea daily since 1st March. Apart from the tiredness I've noticed that my hair doesn't feel like my normal hair. I never...

Hi folks, I've been on 500 mg of Hydrea daily since 1st March. Apart from the t...

Janglo

•1 year ago

18 Replies

Forum in Galway

Hey due to the MPN forum in Northern Ireland sadly being cancelled, I was just wondering if anyone is travelling to the Galway forum and would either be able...

Hey due to the MPN forum in Northern Ireland sadly being cancelled, I was just w...

Assoonas

•1 year ago

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Autoimmune myelofibrosis

Hi has anyone successfully got a diagnosis of autoimmune myelofibrosis? It appears that it is commonly missed and primary mf is diagnosed instead. Outcomes...

Hi has anyone successfully got a diagnosis of autoimmune myelofibrosis? It appea...

Bakerloo73

•1 year ago

6 Replies

Shingles vaccine

My wife was refused the shingles vaccine by her GP as she wasn't old enough (not over 70) we asked for it a year after she had shingles which she really...

My wife was refused the shingles vaccine by her GP as she wasn't old enough (not...

jointpain

•1 year ago

19 Replies

Besremi vs hydroxurea

new to this community. Diagnosed with JAK2 in 2019 via BMB. Transitioned to PV last year. Have had 4 monthly phlebotomies since. New BMB last month confirmed...

new to this community. Diagnosed with JAK2 in 2019 via BMB. Transitioned to PV l...

Teachme85

•1 year ago

4 Replies

Alle burden ratio

I'm due for a review with a consultant in August and won't to understand some technical matters regarding my pv, I'm jak2 positive but I don't know my alle...

I'm due for a review with a consultant in August and won't to understand some ...

john0084

•1 year ago

7 Replies

Besremi/Travel

Has anyone traveled with Besremi? I have never traveled with a medicine that has to be kept cold or an injection. We are flying in June for work but it isn’t...

Has anyone traveled with Besremi? I have never traveled with a medicine that ha...

KLCTJC

•1 year ago

14 Replies

ET-The mental aspect

M52, diagnosed with ET/JAK2+ (confirmed by a BMB) a few years back as my platelet count spiked over 600k. In fact I had a change from "normal" to over 450k at...

M52, diagnosed with ET/JAK2+ (confirmed by a BMB) a few years back as my platele...

Metronome

•1 year ago

70 Replies

Ruxolitinib Versus Best Available Therapy for Polycythemia Vera Intolerant or Resistant to Hydroxycarbamide in a Randomized Trial

« Patients with PV often have high JAK2 V 617F VAF (>50%) because of the emergence of a dominant clone with concurrent loss of wild-type JAK2, which in turn...

« Patients with PV often have high JAK2 V 617F VAF (>50%) because of the emerge...

Manouche

•1 year ago

6 Replies

Hydroxyurea and Shingles

Well I got an answer from my haematologist saying that I did well stopping the pills during therapy and I must start again 10 days after ending the Zovirax...

Well I got an answer from my haematologist saying that I did well stopping the p...

Kelly2

•1 year ago

6 Replies

Inflated potassium again

another blood test showing very high potassium that I am not accepting, however, the only way to combat it is to take another blood test. Irritates me that the...

another blood test showing very high potassium that I am not accepting, however,...

Mishie14

•1 year ago

11 Replies

Waiting on a DX

Good Day! This is my first post. I have been seeing a hematologist since the end of last year (2022). I have been unwell since 2017. I have been through so...

Good Day! This is my first post. I have been seeing a hematologist since the e...

Kmow222

•1 year ago

9 Replies

gastritis and Gerd

I have been taking HU for ET for 4 years. Can this cause gastritis and GERD ?

I have been taking HU for ET for 4 years. Can this cause gastritis and GERD ? ...

Cookiebaker

•1 year ago

6 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for May 2023

Eyes and Chemotherapy

PV diagnosed in Jan 2023

Blood "thinness" test

Another fresh Rux trial, RuxoBeat

Rux Experience at 5 weeks

Specialist in MPN + Neurology?

Another attempt

Good news on Rux

Royal Marsden Hospital Sutton - anyone else being treated there?

pseudohyperkalemia

My new Rux journey

NAC and Glutathione, and my reaction

Ruxolitinib Versus Best Available Therapy for Polycythemia Vera posted by Manouche

HU resistance and bad outcomes

Ultrasound Results

bad itch and body rash

forum Antrim and Belfast

Hydrea hair

Forum in Galway

Autoimmune myelofibrosis

Shingles vaccine

Besremi vs hydroxurea

Alle burden ratio

Besremi/Travel

ET-The mental aspect

Ruxolitinib Versus Best Available Therapy for Polycythemia Vera Intolerant or Resistant to Hydroxycarbamide in a Randomized Trial

Hydroxyurea and Shingles

Inflated potassium again

Waiting on a DX

gastritis and Gerd

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