Posts - MPN Voice | HealthUnlocked

MPN Voice

10,445 members • 14,398 posts

All posts for February 2023

SCT while feeling well

I have been put forward for a SCT, providing a further heart scan is ok. I have Post ET Myelofibrosis, MPL positive, I also have another mutation, which I’ve...

I have been put forward for a SCT, providing a further heart scan is ok. I have ...

SRH55

•1 year ago

38 Replies

bruising

hello My husband is taking aspirin as he said he was getting like a pressure like feeling in his forehead he thinks that the aspirin has helped with that....

hello My husband is taking aspirin as he said he was getting like a pressure li...

Green1988

•1 year ago

4 Replies

Interesting

Clinical Review of ropeginterferon alfa-2b Suggests Amended Dosing Schedule May Support Improved Clinical Outcomes in Polycythemia Vera Review of studies...

Clinical Review of ropeginterferon alfa-2b Suggests Amended Dosing Schedule Ma...

wateron

•1 year ago

8 Replies

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North Tees Hospital Stockton

Is anyone in the group under the care of the Haematology Unit at North Tees in Stockton? If so, what is your experience of the care you receive? I'm...

Is anyone in the group under the care of the Haematology Unit at North Tees in S...

Transporter

•1 year ago

11 Replies

Sauna/steam and raised platlets

I've starred new chat re. Above as some might miss this debate...Just rang hospital . The heamo nurse double checked and said as far as they are aware it's...

I've starred new chat re. Above as some might miss this debate...Just rang hosp...

Mostew

•1 year ago

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Correction sct latest

Neutrophils 0.15 not as per last post. Couldn't find a way of editing previous post

Neutrophils 0.15 not as per last post. Couldn't find a way of editing previous p...

Scaredy_cat

•1 year ago

5 Replies

My sct progress

Here's an update on my sct. I had my donor cells 31 Jan following 6 days radiotherapy and 5 days chemo. My neutrophils have crept up in the last 3 days to 1.15...

Here's an update on my sct. I had my donor cells 31 Jan following 6 days radioth...

Scaredy_cat

•1 year ago

5 Replies

Hydroxy v Inteferon

At last…started Peg last night! Took all your advice (thank you), and did the injection last thing, swallowed 2 paracetamol and headed for bed. Had a decent...

At last…started Peg last night! Took all your advice (thank you), and did the in...

RazB

•1 year ago

11 Replies

Odd consultant appointment

I had my consultant appt today, my last was 3 months ago. Last venesection also around 3 months ago as they were happy with my hematocrit level. Ongoing...

I had my consultant appt today, my last was 3 months ago. Last venesection also...

Lilliegarden

•1 year ago

14 Replies

Update on week appointment

Hi all , Just updated on my appointment from last week has put my treatment on hold last week to see how nerphils wbc still on low side but slightly going...

Hi all , Just updated on my appointment from last week has put my treatment on ...

Jody00

•1 year ago

2 Replies

Essential Thrombocythaemia and Pneumococcal vaccine safe to take?

hello my husband is 36 with Essential Thrombocythaemia Calr type 1 and on aspirin only he has received a letter for the Pneumococcal vaccine but I’m...

hello my husband is 36 with Essential Thrombocythaemia Calr type 1 and on aspi...

Green1988

•1 year ago

11 Replies

Recommendation for an MPN Specialist at MD Anderson

With Dr. Verstovsek's retirement, does anyone have any recommendations for an MPN Specialist at MD Anderson? I see a local MPN specialist but go to MD Anderson...

With Dr. Verstovsek's retirement, does anyone have any recommendations for an MP...

GardNerd

•1 year ago

12 Replies

Pegasys & thyroid

HiI have been taking Pegasys for 10yrs & recently my thyroid levels have been increasing. I am aware that the treatment can affect the thyroid. Does anyone...

HiI have been taking Pegasys for 10yrs & recently my thyroid levels have been i...

Beartime

•1 year ago

12 Replies

Sauna support

Hello, just a little thing…I have recently started swimming 3 times a week (am training for a sea swim) and am having a 15 minute sauna afterwards. I wanted to...

Hello, just a little thing…I have recently started swimming 3 times a week (am t...

RazB

•1 year ago

22 Replies

Pre MF /MF treatment info wanted

I was diagnosed with pre MF after a recent bmb. I’m seeing the doctor in a couple of weeks and would like to know how others are reacting to the different...

I was diagnosed with pre MF after a recent bmb. I’m seeing the doctor in a coupl...

lizzziep

•1 year ago

28 Replies

Upcoming Events of Interest

Just received an announcement from our friends at MPN Advocacy & Education International of some interesting upcoming events. ...

Just received an announcement from our friends at MPN Advocacy & Education Inte...

hunter5582

•1 year ago

4 Replies

New Pegasys Manufacturer

Just received my next 6 month supply of Pegasys. Packaging and presentation is identical to the former Roche version but it’s now from the new licence holder...

Just received my next 6 month supply of Pegasys. Packaging and presentation is i...

AndyT

•1 year ago

5 Replies

Update on Pegylated interferon and parastheasia

Hi I wondered if anyone out there who is experiencing the finger and feet numbness using Pegylated interferon treatment ,has a noticeable reduction with...

Hi I wondered if anyone out there who is experiencing the finger and feet numb...

Bobadog

•1 year ago

22 Replies

Telephone review with haematologist

At my recent telephone appointment with the haematologist I was told that in future I’d only have a review every 6 months instead of every three to four...

At my recent telephone appointment with the haematologist I was told that in fut...

hall2

•1 year ago

37 Replies

APS - Increased Risk of Blood Clots

Has anyone with an MPN with JAK-2 had an Extended Antiphospholipid Profile done? These blood tests check your antibodies (immunoglobulin) which are...

Has anyone with an MPN with JAK-2 had an Extended Antiphospholipid Profile done...

Buggerbear

•1 year ago

1 Reply

Anyone on interferon who has retinoschisis?

Hello I have ET and am getting more and more interested in changing from hydroxycarbemide to interferon Pegasus. I did note that a rare side effect is to cause...

Hello I have ET and am getting more and more interested in changing from hydroxy...

Na56

•1 year ago

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Webinar – MPN Specialized Care and Technology: Digital Health and Symptom Management

PEN (Patient Empowerment Network) is hosting a MPN webinar on Tue 4th April 2023 entitled “MPN Specialized Care and Technology: Digital Health and Symptom...

PEN (Patient Empowerment Network) is hosting a MPN webinar on Tue 4th April 2023...

Mazcd

Partner•1 year ago

1 Reply

Webinar – MPN Specialized Care and Technology: The Ongoing Role of Telemedicine

PEN (Patient Empowerment Network) is hosting a MPN webinar on Tue 7th March 2023, entitled “MPN Specialized Care and Technology: The Ongoing Role of...

PEN (Patient Empowerment Network) is hosting a MPN webinar on Tue 7th March 2023...

Mazcd

Partner•1 year ago

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Very scared for life. Need assistance

Hi. I'm 23 year old male. I've been known to have polycythemia since 2018, records showing high hb since 2016 itself.I made several trips to the hematologist....

Hi. I'm 23 year old male. I've been known to have polycythemia since 2018, recor...

Xuzy

•1 year ago

13 Replies

Anaemia following venesection for PV…advice

Hi folks. I hope everyone is having a great week and getting ready for that well deserved weekend break. I am looking for some advice from you guys. It seems...

Hi folks. I hope everyone is having a great week and getting ready for that wel...

LittleLuna

•1 year ago

18 Replies

Allogenic Stem Cell Transplant

I received a Stem cell transplant six months ago. My decision was based on the availability of a suitable donor and being able to get to remission through...

I received a Stem cell transplant six months ago. My decision was based on the a...

GarciaB

•1 year ago

5 Replies

Besremi and anxiety/depression.

I have been on Besremi since June 22. Largest dosage was 100 mcg. I recently went to 50 as my h/h was 39 and 13. The Best yet! The Besremi seems to finally...

I have been on Besremi since June 22. Largest dosage was 100 mcg. I recently w...

JeanieRN

•1 year ago

16 Replies

living with mpn

just wondering (I have many questions)do other people get anxious when something out of the ordinary happens in their lives eg routine being put out, visitors...

just wondering (I have many questions)do other people get anxious when something...

Chinaplatejules

•1 year ago

31 Replies

Aspirin

Hi Just a question to ask now my platelets have gone into normal range,why do I need to keep taking aspirin daily, ? Thankyou

Hi Just a question to ask now my platelets have gone into normal range,why do ...

Jody00

•1 year ago

11 Replies

Hydroxyurea and skin cancer

I was diagnosed with JAK2 ET last September and have been on Hydroxyurea since then, with good clinical results and minimal side effects. However, I have also...

I was diagnosed with JAK2 ET last September and have been on Hydroxyurea since t...

Minify

•1 year ago

14 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for February 2023

SCT while feeling well

bruising

Interesting

North Tees Hospital Stockton

Sauna/steam and raised platlets

Correction sct latest

My sct progress

Hydroxy v Inteferon

Odd consultant appointment

Update on week appointment

Essential Thrombocythaemia and Pneumococcal vaccine safe to take?

Recommendation for an MPN Specialist at MD Anderson

Pegasys & thyroid

Sauna support

Pre MF /MF treatment info wanted

Upcoming Events of Interest

New Pegasys Manufacturer

Update on Pegylated interferon and parastheasia

Telephone review with haematologist

APS - Increased Risk of Blood Clots

Anyone on interferon who has retinoschisis?

Webinar – MPN Specialized Care and Technology: Digital Health and Symptom Management

Webinar – MPN Specialized Care and Technology: The Ongoing Role of Telemedicine

Very scared for life. Need assistance

Anaemia following venesection for PV…advice

Allogenic Stem Cell Transplant

Besremi and anxiety/depression.

living with mpn

Aspirin

Hydroxyurea and skin cancer

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