Posts - MPN Voice | HealthUnlocked

MPN Voice

10,784 members • 14,980 posts

All posts for June 2024

traveling with Besremi

hello community Instructions for besremi are to keep it refrigerated has anyone travelled for a month at a time or longer? Wondering how this would be...

hello community Instructions for besremi are to keep it refrigerated has anyo...

Laluna5683

•4 months ago

8 Replies

ET jak2 to PV

I have been treated with Hydrea 500mg a day since January of 2021. My bone biopsy that year indicated ET/Jak2. I am seen at a local hematologist here in...

I have been treated with Hydrea 500mg a day since January of 2021. My bone biops...

Auggie17

•4 months ago

12 Replies

Switch (forced) from Peg to Besremi?

So it would appear that there is a scarcity of Peg - went to pharmacy today and was told that they have not had Peg in a number of weeks and that they are not...

So it would appear that there is a scarcity of Peg - went to pharmacy today and ...

Solyesh

•4 months ago

3 Replies

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Why are my platelets normal now with ET?

I just had my routine 4 month bloodwork and my platelets are normal at 399. They were also normal in March at 396. I haven’t had normal platelets in about 10...

I just had my routine 4 month bloodwork and my platelets are normal at 399. They...

Sharkdive1

•4 months ago

38 Replies

broken bones and MPN

I’ve never broken any bone in my body but last week I broke my ankle. I’ve been told it’s a stable fracture and have been given a boot and crutches. I do...

I’ve never broken any bone in my body but last week I broke my ankle. I’ve been ...

Val_P

•4 months ago

4 Replies

Dublin meeting

Hi I would just like to say a really big thank you to all who organised today’s meeting in Dublin. So many excellent talks by the speakers and so much...

Hi I would just like to say a really big thank you to all who organised today’s ...

Margo18

•4 months ago

2 Replies

Clinical impact of mutated JAK2 allele burden reduction in polycythemia vera and essential thrombocythemia

»The variant allele frequency (VAF) of driver mutations (JAK2, CALR) in myeloproliferative neoplasms is associated with features of advanced disease and...

»The variant allele frequency (VAF) of driver mutations (JAK2, CALR) in myelopr...

Manouche

•4 months ago

20 Replies

Osteoarthritis and Platelets rising.

This is my first post, i read daily but have never posted. I was diagnosed last year in Febuary with ET and Jak2. My Platelets when diagnosed were 1300 Feb...

This is my first post, i read daily but have never posted. I was diagnosed last ...

Kareneliz

•4 months ago

4 Replies

Mrs M

can anyone tell me if I can get sedation at the dentist on hydrea

Daisyduke40

•4 months ago

4 Replies

should I start interferon?

I’d be grateful for any advice or guidance on starting Interferon for ET CalR mutation. I was diagnosed with ET approximately 12 years ago when I was 57. I...

I’d be grateful for any advice or guidance on starting Interferon for ET CalR mu...

Reggieroo

•4 months ago

45 Replies

Chronic Venous Insufficiency

Hi all Have regularly read your posts which are extremely helpful and have posted occasionally. I have recently been diagnosed with CVI, has anyone else had...

Hi all Have regularly read your posts which are extremely helpful and have post...

lindyloulou

•4 months ago

5 Replies

Getting admitted to hospital, why is it so bloody difficult in Wales?

My now long suffering wife, had another blood test this morning, and told to go home afterwards and await the results. The results were Hgb 79 platelets 4 yes...

My now long suffering wife, had another blood test this morning, and told to go ...

jointpain

•4 months ago

39 Replies

Breathing and standing!

Hello. A disparate couple of questions for you with longer term experience of PV please? I'm having a slightly uncomfortable breathing symptom. Have had it...

Hello. A disparate couple of questions for you with longer term experience of PV...

RoundTheWorld

•4 months ago

22 Replies

Advice please from those post SCT about dentistry

Hi everyone, thank you for reading. I'm now 2.5 years post transplant for myelofibrosis. My treatment was very intense which had left me with alot of long...

Hi everyone, thank you for reading. I'm now 2.5 years post transplant for myel...

Marchhare7

•4 months ago

8 Replies

ET Jak2 . Low iron

I’m reaching out to the knowledgeable members of this incredible community from whom I have learned so much… to maybe give me some further insight…. I was...

I’m reaching out to the knowledgeable members of this incredible community from ...

Stargaye

•4 months ago

5 Replies

Jak2 V617F Positive

Good morning everyone! My name is Melis. I'm a 38-year-old female who found out I'm Jak 2 positive. I have an appointment with the hematologist on 06/11. Does...

Good morning everyone! My name is Melis. I'm a 38-year-old female who found out ...

Jakgal

•4 months ago

37 Replies

It pays to chat

Following my last post re shingles vaccine and that I had not had a face to face consultation since pre covid I have had a telephone consultation and I thought...

Following my last post re shingles vaccine and that I had not had a face to face...

nanmc

•4 months ago

6 Replies

Blood in syringe

Hi all Just a quick question to those who self inject please. I've just given myself my peg shot, and when I removed the syringe, I noticed that there was...

Hi all Just a quick question to those who self inject please. I've just given...

Skyehope

•4 months ago

10 Replies

shingrix

I am nearly 79 and have been dx with ET since 2021 and on hydroxycarbamide and low dose aspirin. I got shingles in June 2022 and it was pretty awful for about...

I am nearly 79 and have been dx with ET since 2021 and on hydroxycarbamide and l...

Michali45

•4 months ago

41 Replies

Operation

Well had my bowel resection 8 weeks ago my concerns about general anaesthetic because of ET and never had operation before was unfounded surgeon said I woke...

Well had my bowel resection 8 weeks ago my concerns about general anaesthetic b...

ChillyAsh34

•4 months ago

11 Replies

MPN specialist Dr. Josef Prchal out of Salt Lake City Utah

I was wondering if anyone is seeing him? I am out of Las Vegas, and am currently loosing my hematologist/oncologist. He was not a specialist even though his...

I was wondering if anyone is seeing him? I am out of Las Vegas, and am currently...

FINFAN1970

•4 months ago

1 Reply

Eye Supplement Concern

Eye doctor highly recommended taking supplement Preservision. I cleared with hematology re peginterferon but after buying it, researching ingredients and...

Eye doctor highly recommended taking supplement Preservision. I cleared with he...

Mishie14

•4 months ago

17 Replies

Parvovirus B19 with EY

hi my husband has ET and just got Parvovirus B19 I’m reading online that it is not good any one have any advice on this?

hi my husband has ET and just got Parvovirus B19 I’m reading online that it is n...

Chez311

•4 months ago

2 Replies

Started Rux

Hello All, I am a 75 year old guy, diagnosed with MF two years ago, and been on 1 Hydrea 500/ day since. In May my dr convinced me to switch to Rux. We are...

Hello All, I am a 75 year old guy, diagnosed with MF two years ago, and been on ...

Arami

•4 months ago

10 Replies

PV - need medical codes for allele burden test

I have polycythemia vera and have been on hydroxyurea since November 2023. My doctor has finally agreed to prescribe Besemri but, I have asked him to first...

I have polycythemia vera and have been on hydroxyurea since November 2023. My d...

FlannelPJs

•4 months ago

10 Replies

Blood Parameters effected by dieting?

I just finished a diet of 4 weeks where I lost just over 10 pounds. So 3 or 4 days after the diet I had blood work done - These are the changes in 4 weeks...

I just finished a diet of 4 weeks where I lost just over 10 pounds. So 3 or ...

ET824

•4 months ago

11 Replies

E.T. Symptoms

I’m JAK2 positive and have been diagnosed with E.T. a few weeks ago. I’m on hydroxycarbamide plus aspirin and am 74 and, apart from this, am reasonably fit....

I’m JAK2 positive and have been diagnosed with E.T. a few weeks ago. I’m on hydr...

Hbm1

•4 months ago

23 Replies

blood morphology

Does everyone have morphology when CBC is done . I have blood done every 2 months and see hemo every 4 . The morphology was strange … showing anthracites,...

Does everyone have morphology when CBC is done . I have blood done every 2 mont...

Cookiebaker

•4 months ago

7 Replies

ET triple negative

Hi. Diagnosed at 16 and I'm now 45. I've had various medications throughout, some ok, some not so great. They've either made me miserable or become tolerated....

Hi. Diagnosed at 16 and I'm now 45. I've had various medications throughout, so...

FernBee

•4 months ago

29 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for June 2024

traveling with Besremi

ET jak2 to PV

Switch (forced) from Peg to Besremi?

Why are my platelets normal now with ET?

broken bones and MPN

Dublin meeting

Clinical impact of mutated JAK2 allele burden reduction in polycythemia vera and essential thrombocythemia

Osteoarthritis and Platelets rising.

Mrs M

should I start interferon?

Chronic Venous Insufficiency

Getting admitted to hospital, why is it so bloody difficult in Wales?

Breathing and standing!

Advice please from those post SCT about dentistry

ET Jak2 . Low iron

Jak2 V617F Positive

It pays to chat

Blood in syringe

shingrix

Operation

MPN specialist Dr. Josef Prchal out of Salt Lake City Utah

Eye Supplement Concern

Parvovirus B19 with EY

Started Rux

PV - need medical codes for allele burden test

Blood Parameters effected by dieting?

E.T. Symptoms

blood morphology

ET triple negative

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