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MPN Voice

10,575 members • 14,620 posts

All posts for May 2022

Monthly blog dedicated to young people living with MPNsAlice’s eighth blog: A Day in the Life: Having a Bone Marrow Biopsy

This month Alice talks about bone marrow biopsies, and tells us about her experience of having her first bone marrow biopsy, and describes what it was like for...

This month Alice talks about bone marrow biopsies, and tells us about her experi...

Mazcd

Partner•2 years ago

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First Visit With My MPN Specialist!

Oh my goodness! There was no comparison to the level of care I’ve been receiving and what I experienced today. Thank you all so much for encouraging me...

Oh my goodness! There was no comparison to the level of care I’ve been rec...

Barbiebreath

•2 years ago

18 Replies

Aching and tingling… is this my PV?

Hello! I have PV, JAK2 diagnosed in 2015. I have been on Pegasys for the last 2 years and my numbers are well controlled. Lately, my lower legs, knees, and...

Hello! I have PV, JAK2 diagnosed in 2015. I have been on Pegasys for the last...

DN515

•2 years ago

3 Replies

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Update! Does anyone know?

Update from blood test. I had a hemorrhage in the calf after an injury so it may have affected the result. Does anyone have experience with this? One month ago...

Update from blood test. I had a hemorrhage in the calf after an injury so it may...

Johan2021

•2 years ago

5 Replies

Ruxolitinib

Husband has PV and MPN currently on Ruxolitinib which for him has been amazing and life saving. Only drawback is having had some skin cancers. Presently he...

Husband has PV and MPN currently on Ruxolitinib which for him has been amazing a...

waddles22

•2 years ago

13 Replies

Is this a sign of progression from ET to MF?

Hey there, I'm 28yrs old and was diagnosed a year ago with ET. Platelets were around 470 when I was diagnosed and steadily increased to around 720 in February...

Hey there, I'm 28yrs old and was diagnosed a year ago with ET. Platelets were a...

RaspberryRen

•2 years ago

13 Replies

MPN Specialist

We just got word that one of the lead MPN Specialists at Johns Hopkins (my current doc, Dr. Evan Braunstein) will be leaving to become the Medical Director at...

We just got word that one of the lead MPN Specialists at Johns Hopkins (my curre...

hunter5582

•2 years ago

26 Replies

High platelet count, new doctor said normal. HELP

Hi, hope everyone is well. Im am 37 years old and I've been having blood tests every 6 weeks for months now as my platelet count has been slowly rising. My...

Hi, hope everyone is well. Im am 37 years old and I've been having blood tests e...

Staceylou841

•2 years ago

33 Replies

Burning sensation

Can anyone tell me if this is an MPN symptom please. At first I periodically get a warm glow feeling on the arch of my foot. It’s there for about a minute. I...

Can anyone tell me if this is an MPN symptom please. At first I periodically get...

Wyebird

•2 years ago

49 Replies

Update ,coronery stent

I did had the stent procedure on Thursday, it went well but they informed that I have 2 more stents to be placed.I am grateful for the supportive feedback...

I did had the stent procedure on Thursday, it went well but they informed that I...

krotsida

•2 years ago

10 Replies

Night sweats

I am 62 with MF and wondering how u can tell the difference between a night sweats and menopausal hot flushes

I am 62 with MF and wondering how u can tell the difference between a night swea...

Stripecat

•2 years ago

12 Replies

Discovery of a signaling feedback circuit that defines interferon responses in MPN

« Interferons (IFNs) are key initiators and effectors of the immune response against malignant cells and also directly inhibit tumor growth. IFNα is highly...

« Interferons (IFNs) are key initiators and effectors of the immune response aga...

Manouche

•2 years ago

5 Replies

It never rains but it bleep bleep pours!

A follow up from my last post. It appears that the fungal/mould spores from our leaky kitchen/bathroom floors have done their worst and I’m now in hospital...

A follow up from my last post. It appears that the fungal/mould spores from our ...

beetle

•2 years ago

30 Replies

Home today!!!!!

Neutrophils are 0.6 and I'm going home today! Having a transfusion first and waiting for the pharmacy to do its thing. I will be back in early June probably....

Neutrophils are 0.6 and I'm going home today! Having a transfusion first and wai...

Otterfield

•2 years ago

40 Replies

BESREMI ACHIEVES PATIENT-SPECIFIC TREATMENT GOALS IN POLYCYTHEMIA VERA: FINAL RESULTS FROM THE PROUD-PV/CONTINUATION-PV STUDIES

« No phlebotomies were required to maintain hematocrit <45% in the 6th year of treatment in 81.4% of patients receiving Besremi compared with 60.0% of patients...

« No phlebotomies were required to maintain hematocrit <45% in the 6th year of t...

Manouche

•2 years ago

12 Replies

Immunotherapy with checkpoint inhibitors for MPN

Often the body's natural defense system can distinguish the cancer cells from healthy cells but sometimes the immune response is insufficient to clear the...

Often the body's natural defense system can distinguish the cancer cells from he...

Paul1993et

•2 years ago

4 Replies

Night sweats

Hi I’m a lady coming up to 70 been on HU 10 pills a week now since 2015 have ET jak 2 positive for a while now I get night sweating but not bad that it wets...

Hi I’m a lady coming up to 70 been on HU 10 pills a week now since 2015 have ET...

Birdlady2021

•2 years ago

10 Replies

Sepsis and Covid

I had ET in 2016, the re-diagnosed with MF and atrial fibrilation in 2017, various treatments since, but both stable for the last year, but admitted to...

I had ET in 2016, the re-diagnosed with MF and atrial fibrilation in 2017, var...

Andrew8

•2 years ago

2 Replies

Can Pv and peg interferon cause issues with your immune system

Morning Wondered if anyone else has had issues with immune system since being diagnosed with an Mpn and being treated with peg interferon I started on 45mcg...

Morning Wondered if anyone else has had issues with immune system since being d...

Dottiedot

•2 years ago

8 Replies

Latest CBC CMP Besremi 3+ months

Just an update on current numbers as Bes continues. I wrote about eye concerns recently, and we shared many ideas there. Here is HCT. It's going the right...

Just an update on current numbers as Bes continues. I wrote about eye concerns ...

EPguy

•2 years ago

18 Replies

Curcumin Real Clinical Study, Anti Inflam

Came across this one. I think it's a rare Curc study using real people, vs animal or lab tests. It's looking for benefits in kidney disease. I was looking...

Came across this one. I think it's a rare Curc study using real people, vs anim...

EPguy

•2 years ago

2 Replies

How often should we have erythropoietin and LDH checked?

Hi there, When I was seeing my specialist at Vanderbilt, he was checking my Erythropoietin and LDH every 2-3 months. My local Heme/Onc doctor never orders...

Hi there, When I was seeing my specialist at Vanderbilt, he was checking my Ery...

Wewo01

•2 years ago

18 Replies

Jardiance and lower HCT/Hgb

I am trying to sort an unusual but positive change in my PV. I am Jak2 + and was diagnosed 4 years ago. I am on Hydroxy 500 mg once a day for 5 days and 2 tabs...

I am trying to sort an unusual but positive change in my PV. I am Jak2 + and was...

Jsb45

•2 years ago

4 Replies

Questions about Jakafi

Good morning everyone, I have PV. I am 75 and was diagnosed about 5 years ago. For the most part I feel fine. My Hematologist would like me to try Jakafi. I...

Good morning everyone, I have PV. I am 75 and was diagnosed about 5 years ago. ...

Bluetoday1

•2 years ago

4 Replies

coronery stent

Hello friends I am programmed tomorrow for coronery stant, is there anyone who has done the same surgery and how it went, it hurt, what to expect next, do I...

Hello friends I am programmed tomorrow for coronery stant, is there anyone who ...

krotsida

•2 years ago

16 Replies

Considering Besremi

Hi all (first post) i am 76 & was diagnosed with PV 3 years ago. I am just being treated with aspirin (81 mg, once a day) and phlebotomy. I usually need...

Hi all (first post) i am 76 & was diagnosed with PV 3 years ago. I am just being...

wateron

•2 years ago

19 Replies

Hydroxyurea-induced ankle ulcers

85, been on 1000 mg/day of Urea for five years fighting essential thrombocytosis. Now have a nasty ankle ulcer and my doc wants me to switch to...

85, been on 1000 mg/day of Urea for five years fighting essential thrombocytosis...

veryoldman

•2 years ago

9 Replies

Hydroxycarbamide and Butec (buprenorphine) pain patch

Hello everyone. I thought I would post the information I have got about an interaction between these drugs. I have been speaking in depth to a pharmacist and...

Hello everyone. I thought I would post the information I have got about an inte...

Jelbea

•2 years ago

13 Replies

Liver Issues on Inf (Peg) (apologies for long post)

So spoke with my MPN specialist last night about my recent CBC results. The good news is that the 90mcg of Peg (bi-weekly) appears to be doing a good job...

So spoke with my MPN specialist last night about my recent CBC results. The good...

Solyesh

•2 years ago

7 Replies

Sharing my experience with Covid19 and Antiviral meds!

On Saturday I tested positive for Covid19. Called 119 and reported it and was told that someone will call me and received few texts from NHS but no call form...

On Saturday I tested positive for Covid19. Called 119 and reported it and was to...

light

•2 years ago

9 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for May 2022

Monthly blog dedicated to young people living with MPNsAlice’s eighth blog: A Day in the Life: Having a Bone Marrow Biopsy

First Visit With My MPN Specialist!

Aching and tingling… is this my PV?

Update! Does anyone know?

Ruxolitinib

Is this a sign of progression from ET to MF?

MPN Specialist

High platelet count, new doctor said normal. HELP

Burning sensation

Update ,coronery stent

Night sweats

Discovery of a signaling feedback circuit that defines interferon responses in MPN

It never rains but it bleep bleep pours!

Home today!!!!!

BESREMI ACHIEVES PATIENT-SPECIFIC TREATMENT GOALS IN POLYCYTHEMIA VERA: FINAL RESULTS FROM THE PROUD-PV/CONTINUATION-PV STUDIES

Immunotherapy with checkpoint inhibitors for MPN

Night sweats

Sepsis and Covid

Can Pv and peg interferon cause issues with your immune system

Latest CBC CMP Besremi 3+ months

Curcumin Real Clinical Study, Anti Inflam

How often should we have erythropoietin and LDH checked?

Jardiance and lower HCT/Hgb

Questions about Jakafi

coronery stent

Considering Besremi

Hydroxyurea-induced ankle ulcers

Hydroxycarbamide and Butec (buprenorphine) pain patch

Liver Issues on Inf (Peg) (apologies for long post)

Sharing my experience with Covid19 and Antiviral meds!

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