Posts - MPN Voice | HealthUnlocked

MPN Voice

10,445 members • 14,398 posts

All posts for April 2023

MPN Jargon

Being new to this forum, there is lots of interesting information on here, but I do not understand all of the technical terms/jargon. Is there a glossary on...

Being new to this forum, there is lots of interesting information on here, but I...

ETket

•1 year ago

13 Replies

FDA Approves Cell Therapy for Patients with Blood Cancers to Reduce Risk of Infection Following Stem Cell Transplantation- Released 4/17/23

Today [4/17/23], the U.S. Food and Drug Administration approved Omisirge (omidubicel-onlv), a substantially modified allogeneic (donor) cord blood-based cell...

Today [4/17/23], the U.S. Food and Drug Administration approved Omisirge (omidub...

PhysAssist

•1 year ago

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Ruxolitinib and Skin Cancer

Contacting on behalf of my 78 year old husband . He was diagnosed with Polycythemia Vera MPN and in July 2017 he eventually was prescribed the above drug. He...

Contacting on behalf of my 78 year old husband . He was diagnosed with Polycythe...

waddles22

•1 year ago

15 Replies

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Appointments-results

Hi guys had mu cystoscopy done just showed up recent infections ,had ultrasound done the cyst in left kidney are simple,the sonographer suggested that I have a...

Hi guys had mu cystoscopy done just showed up recent infections ,had ultrasound ...

Jody00

•1 year ago

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How high is your WBC in polycythemia vera?

Hey all how often does your WBC fluctuate. Mine hover around 8 to 14 They say some variations is expected in pv but when should we really be concerned to ask...

Hey all how often does your WBC fluctuate. Mine hover around 8 to 14 They say so...

Xuzy

•1 year ago

17 Replies

Advice please.

Hi all. For those that have contacted Prof Harrison my question is did you have to go in person or would she do a telephone appointment. I have been taking...

Hi all. For those that have contacted Prof Harrison my question is did you have...

Arnoldthecat

•1 year ago

22 Replies

What's wrong with me?

Hi everyone. My problem is I'm triple ney, had bone marrow biopsy which did not indicate an MPL, however I was expecting to be discharged from haematologist...

Hi everyone. My problem is I'm triple ney, had bone marrow biopsy which did not ...

Jewels707

•1 year ago

4 Replies

Polycythemia Vera Management Often Does Not Follow Guidelines

« Overall, the authors said their data suggest physicians are overreliant on phlebotomy, even though a relatively low percentage of patients are achieving...

« Overall, the authors said their data suggest physicians are overreliant on phl...

Manouche

•1 year ago

22 Replies

Prof Claire Harrison shared ET paper via Twitter

https://www.sciencedirect.com/science/article/abs/pii/S0006497122080831

Magg

•1 year ago

17 Replies

fatigue - do vitamin B12 shots help?

Hi everyone, Recently my hematologist suggested vitamin B12 shots to help with fatigue. Has anyone else tried this and did it work? Are there negative side...

Hi everyone, Recently my hematologist suggested vitamin B12 shots to help with ...

souplover

•1 year ago

12 Replies

Change in bowel habits

hi there, I am Jak2+ and have ET/ mylofibrosis. I have read where there is an ink between Ulcerative Colitis and Jak2+. Anyone ese having bowel trouble....

hi there, I am Jak2+ and have ET/ mylofibrosis. I have read where there is an in...

Cabert

•1 year ago

12 Replies

Hydroxycarbamide

About to start this, but I see it advises protection for sex and oral sex, but I read a post saying this was only seen on the voice and macmillan .No one else...

About to start this, but I see it advises protection for sex and oral sex, but I...

bloby

•1 year ago

12 Replies

struggling with ET symptoms after covid

Hi all. I was diagnosed with JAK2 positive ET 2 years ago and up until early this week I was injecting 180mg of interferon weekly. My platelets have hovered...

Hi all. I was diagnosed with JAK2 positive ET 2 years ago and up until early thi...

FashionLover

•1 year ago

6 Replies

Fatigue

have not posted in a while. Posting for my husband who is 73yr male diagnosed with MF JAK2 back in 2020 He has seen an MPN Dr since 2020 when first diagnosed....

have not posted in a while. Posting for my husband who is 73yr male diagnosed wi...

Bainbridge

•1 year ago

14 Replies

ET, Joint Pain, and NAC: Seeking Alternative Solutions

I have ET with joint pain in my knees and elbows. N-acetylcysteine (NAC) has effectively reduced my pain by 90%. However, I found a study...

I have ET with joint pain in my knees and elbows. N-acetylcysteine (NAC) has eff...

BlastedKnees

•1 year ago

28 Replies

HealthUnlocked 'Daily Digest' has disappeared

For some unknown reason, I have suddenly stopped receiving MPN 'Daily Digest' notifications to my email account. I haven't made any system changes and wondered...

For some unknown reason, I have suddenly stopped receiving MPN 'Daily Digest' no...

welshhuw

•1 year ago

2 Replies

anyone else with extreme high TSH levels ????

I had my thyroid levels checked yesterday and my TSH is 62 !!!!!!!!! My mpn specialist is making me stop Besremi until I see an endocrinologist . Anyone else...

I had my thyroid levels checked yesterday and my TSH is 62 !!!!!!!!! My mpn spec...

Ggrana3192

•1 year ago

5 Replies

Dosing Jakafi

After 2 years on Hydrea for CALR ET, 4 weeks ago I started jakafi 10mg twice a day . Getting cbc every two weeks has shown platelets increasing each time....

After 2 years on Hydrea for CALR ET, 4 weeks ago I started jakafi 10mg twice a d...

George1976

•1 year ago

13 Replies

ET/MPNs cause or irritate musculoskeletal issues

Hi all, I hope everyone is keeping as well as they can be…. I have read a few stories and queries on here recently and it peaked my thoughts. I have had a...

Hi all, I hope everyone is keeping as well as they can be…. I have read a few ...

Grendall

•1 year ago

14 Replies

JAK2V617F allele burden in polycythemia vera: burden of proof

« The JAK2V617F variant allele frequency (VAF) is a key determinant of outcomes in PV, including thrombosis and myelofibrotic progression. Here, we critically...

« The JAK2V617F variant allele frequency (VAF) is a key determinant of outcomes ...

Manouche

•1 year ago

5 Replies

'Astonishing' Results: Skip Salvage Chemo, Go Straight to HSCT from ASH 2022 [For Refractory AML/Relapsed AML]

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

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

PhysAssist

•1 year ago

1 Reply

MPN Voice Vlogcasts – In Conversation With… Prof Lesley Anderson, Chief Investigator for the MOSAICC Epidemiology Study

MPN Voice Vlogcasts – In Conversation With… a series of monthly informal conversations with members of the MPN community with Nona co-chair of MPN Voice and a...

MPN Voice Vlogcasts – In Conversation With… a series of monthly informal convers...

Mazcd

Partner•1 year ago

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Fatigue

HI all, im hoping someone will be able to help me or at least tell me their story. I am 48 have had PV for 2 years now. Treatment has been baby aspirin and...

HI all, im hoping someone will be able to help me or at least tell me their stor...

iswhatitis1

•1 year ago

69 Replies

Travel insurance help please

Hi all, for the first time in 12 year bf and I can afford a holiday abroad. I have pv/ mf and I’m 81 with several other ongoing health conditions. Stay sure...

Hi all, for the first time in 12 year bf and I can afford a holiday abroad. I ha...

Mal42

•1 year ago

3 Replies

PV at a young age

hello everyone, I am wondering if anyone else here has been diagnosed with PV at a young age & how they have faired. I’m only 26 years old and my anxiety has...

hello everyone, I am wondering if anyone else here has been diagnosed with PV at...

Nrl303

•1 year ago

32 Replies

Besremi being denied by Medicare

Hoping to hear from one of you on Medicare this is an aberration, but I got a letter today indicating that the Medicare appeal submitted by my local cancer...

Hoping to hear from one of you on Medicare this is an aberration, but I got a le...

Ovidess

•1 year ago

22 Replies

Besremi - Dosing Change

I consulted my hematologist after having 3 months of low WBC, RBC, and HCT. I followed his suggestion to inject 100 mcg of Besremi every month instead of of...

I consulted my hematologist after having 3 months of low WBC, RBC, and HCT. I fo...

Pat032018

•1 year ago

2 Replies

Post Peg side effects

Hi, I’ve posted on here a few times re Hydroxy V Peg, then posted after first & second Peg doses. You have all been really supportive and helpful. Thank you. I...

Hi, I’ve posted on here a few times re Hydroxy V Peg, then posted after first & ...

RazB

•1 year ago

4 Replies

Daisy-May

Has anyone had the spring Covid Booster

Daisy-May

•1 year ago

51 Replies

Shocking Price of Jakafi

So I am in the USA. I have ET diagnosed in 2018. Have taken Hydroxyurea since then. I have been having lots of side effects from Hydrea, so my Dr. suggested a...

So I am in the USA. I have ET diagnosed in 2018. Have taken Hydroxyurea since th...

dogsandhorses

•1 year ago

16 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for April 2023

MPN Jargon

FDA Approves Cell Therapy for Patients with Blood Cancers to Reduce Risk of Infection Following Stem Cell Transplantation- Released 4/17/23

Ruxolitinib and Skin Cancer

Appointments-results

How high is your WBC in polycythemia vera?

Advice please.

What's wrong with me?

Polycythemia Vera Management Often Does Not Follow Guidelines

Prof Claire Harrison shared ET paper via Twitter

fatigue - do vitamin B12 shots help?

Change in bowel habits

Hydroxycarbamide

struggling with ET symptoms after covid

Fatigue

ET, Joint Pain, and NAC: Seeking Alternative Solutions

HealthUnlocked 'Daily Digest' has disappeared

anyone else with extreme high TSH levels ????

Dosing Jakafi

ET/MPNs cause or irritate musculoskeletal issues

JAK2V617F allele burden in polycythemia vera: burden of proof

'Astonishing' Results: Skip Salvage Chemo, Go Straight to HSCT from ASH 2022 [For Refractory AML/Relapsed AML]

MPN Voice Vlogcasts – In Conversation With… Prof Lesley Anderson, Chief Investigator for the MOSAICC Epidemiology Study

Fatigue

Travel insurance help please

PV at a young age

Besremi being denied by Medicare

Besremi - Dosing Change

Post Peg side effects

Daisy-May

Shocking Price of Jakafi

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