Posts - MPN Voice | HealthUnlocked

MPN Voice

10,443 members • 14,393 posts

All posts for November 2021

Pegasys/ ET and HRT

I have ET, my platelets have been very high at over 1500 and I have taken up to 270mcg Pegasys weekly at one point and must say that was not the best. However...

I have ET, my platelets have been very high at over 1500 and I have taken up to ...

Suebon

•2 years ago

5 Replies

Interesting appointment today.

I had an interesting appointment today with my local hematologist. I'll start by saying I'm ET Calr 1. I see a specialist in Denver at UCHealth Anschutz. He...

I had an interesting appointment today with my local hematologist. I'll start b...

mother2britton

•2 years ago

12 Replies

Major surgery with PV

Unfortunately 4 weeks ago I was diagnosed with cancer in my sigmoid colon for which I am due to have an operation on the 29th. I am just a little anxious about...

Unfortunately 4 weeks ago I was diagnosed with cancer in my sigmoid colon for wh...

Gordon335

•2 years ago

16 Replies

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Iron Supplement for Anaemia ?

I had a telephone consultation with my haematologist today, who told me that my Haemaglobin levels were a bit low, therefore making me slightly anaemic. ..I...

I had a telephone consultation with my haematologist today, who told me that my ...

CraftySpider

•2 years ago

13 Replies

Can anyone recommend a good haematologist in Ukraine? Specifically, a specialist working with pegylated Interferon-alfa2b?

Hi guys! I live in Ukraine and am currently looking for a good haematologist to advise on the best treatment for our case of PV/MPF. Ideally, pegylated...

Hi guys! I live in Ukraine and am currently looking for a good haematologist to ...

Dovakin

•2 years ago

7 Replies

hydroxyurea and lactose intolerance

Hi everyone, At the ripe old age of 73, I suddenly seem to have developed lactose intolerance. I'm wondering whether it's connected to the hydroxyurea. How...

Hi everyone, At the ripe old age of 73, I suddenly seem to have developed lactos...

souplover

•2 years ago

14 Replies

I need some help please finding a Dr in Greece

Hi my dear friends i am Nikos from Greece and three months ago I found I have pv with jak2 positive i am 42 years old with two kids i started phlebotomies at...

Hi my dear friends i am Nikos from Greece and three months ago I found I have pv...

niktsoukalas

•2 years ago

39 Replies

Pruritus. (Extreme itching) .Can no longer shower....

Background : 65 year old male. Asymptomatic PV since 2013.Only take aspirin.3-4 phlebotomies per year.All else is fine. I can no longer bear the 30+ minutes...

Background : 65 year old male. Asymptomatic PV since 2013.Only take aspirin.3-4...

Innessant

•2 years ago

37 Replies

Video of the MPN Voice ‘Virtual’ Patients’ Forum – Belfast, now available to view

Held on Saturday 13th November 2021 The video of the forum is now available to view on the MPN Voice YouTube channel....

Held on Saturday 13th November 2021 The video of the forum is now available to v...

Mazcd

Partner•2 years ago

1 Reply

Enlarged spleen

Enlarged spleen. Does any one heard about different effect of h.u and peg interferon on spleen?since I started to use peg my spleen got bigger from 15-16 to 18...

Enlarged spleen. Does any one heard about different effect of h.u and peg interf...

eladhil

•2 years ago

6 Replies

Hydroxy curls!

Has anyone else developed curly hair whilst taking Hydroxy! I've always had a wave in my hair but now my hair is dry, frizzy and very curly. I straighten it,...

Has anyone else developed curly hair whilst taking Hydroxy! I've always had a wa...

Cakeface

•2 years ago

36 Replies

Jabs jabs

Had my 3rd Jab tonight and they told me to check with my hematologist wether she wants me to have a 2nd booster or not anyone else had this

Had my 3rd Jab tonight and they told me to check with my hematologist wether sh...

ChillyAsh34

•2 years ago

10 Replies

10 facts MPN patients need to know about FDA approval of Ropegylated interferon alpha2b (Besremi).

Ruben Mesa, MD, FACP, executive director of Mays Cancer Center, home to UT Health San Antonio MD Anderson Cancer Center, and MPN expert and investigator,...

Ruben Mesa, MD, FACP, executive director of Mays Cancer Center, home to UT Healt...

Manouche

•2 years ago

9 Replies

Information on Acute Myeloid Leukaemia

After PV for many years , Myelofibrosis for two years , I now have AML. On Ruxolitinib and EPO injections I’m having panic attacks, it seems no treatment is...

After PV for many years , Myelofibrosis for two years , I now have AML. On Ruxol...

Mysi

•2 years ago

14 Replies

Antibody test update. Good News!

I have just received my result for the Covid Cancer Antibody Survey which I posted about last week. I am very pleased to say I have antibodies. It doesn’t say...

I have just received my result for the Covid Cancer Antibody Survey which I post...

azaelea

•2 years ago

14 Replies

Increasingly outspoken!

Hi everyone I feel somewhat embarrassed and a bit of an idiot asking this question but the longer I have PV ( and living well with it) and the longer I take...

Hi everyone I feel somewhat embarrassed and a bit of an idiot asking this questi...

Loubprv

Volunteer•2 years ago

39 Replies

Hernia of the spleen

Hi, I just wondered if anyone else has been diagnosed with a hernia of the spleen. I had an ultrasound a few months ago and everything seemed fine. In the...

Hi, I just wondered if anyone else has been diagnosed with a hernia of the splee...

Aime

•2 years ago

15 Replies

Thank you to Maz and Nona

Thank you Maz and Nona for an excellent Belfast Forum today Very helpful and informative as usual Here’s to the next time in person Margo

Thank you Maz and Nona for an excellent Belfast Forum today Very helpful and in...

Margo18

•2 years ago

2 Replies

FDA Approves Ropeginterferon Alfa-2b-njft for Polycythemia Vera

The FDA has approved ropeginterferon alfa-2b-njft (Besremi) for use as a treatment in patients with polycythemia vera.1 The regulatory decision was based on...

The FDA has approved ropeginterferon alfa-2b-njft (Besremi) for use as a treatm...

JT_Marlin

•2 years ago

26 Replies

US Ropeg approval!

I'm probably not the only one with a quick clickly finger, but I've been watching today. It's for real....

I'm probably not the only one with a quick clickly finger, but I've been watchin...

EPguy

•2 years ago

3 Replies

HU & breathlessness

I’ve been on HU for 7!years and I noticed after about 9 months I was getting very slightly breathless. However, 7 years down the line I am extremely breathless...

I’ve been on HU for 7!years and I noticed after about 9 months I was getting ver...

130396

•2 years ago

46 Replies

Has anyone on hydroxy been told why it's so difficult to lose any weight restrictive eating?

I'm on 500mg hydroxycarbamide for ET, my platelets are now normal.

Hidden

•2 years ago

15 Replies

Vitamin B12 affecting HCT ?

Hi I’ve just started taking Peg(45mcg fortnightly) My HCT levels have increased more than before taking Peg. I have required 2 venesections within 3 weeks.(.47...

Hi I’ve just started taking Peg(45mcg fortnightly) My HCT levels have increased ...

Bobadog

•2 years ago

15 Replies

SCT risks

My husband and I are just back from Southampton after another appointment with my SCT specialist. This was the one where he went through all the risks of the...

My husband and I are just back from Southampton after another appointment with m...

Otterfield

•2 years ago

34 Replies

Some good news...

Some good news... Call from my haematology consultant, she is very pleased with my results, she is stopping my chemotherapy today, she said my JAK2 gene count...

Some good news... Call from my haematology consultant, she is very pleased with...

shiftzz

•2 years ago

36 Replies

Wrong culprit?

Few weeks ago I’ve restarted hydroxycarbamide to see if I could cope better this time. Had some reservations re anagrelide. Anyway, about the same time I...

Few weeks ago I’ve restarted hydroxycarbamide to see if I could cope better this...

Cokopops

•2 years ago

6 Replies

Hu platelets still rising

Good morning All. Just a quick one My haemotoligist has upped my hu to 2000mg mon to Friday then 2500 weekends yet my platelets are still on the up how is...

Good morning All. Just a quick one My haemotoligist has upped my hu to 2000mg m...

JeniMac

•2 years ago

8 Replies

Update 5.9

The journey with Pegasys continues to go well. I continue to have no side effects at 45mcg/week. All CMP numbers look good. No sign of any issues with...

The journey with Pegasys continues to go well. I continue to have no side effe...

hunter5582

•2 years ago

58 Replies

Vaccination

Hi all I got a letter other day saying something about a 3rd vaccination not booster vaccination has I've already had my booster jab ,does this me we are...

Hi all I got a letter other day saying something about a 3rd vaccination not boo...

Jody00

•2 years ago

7 Replies

Covid Cancer Survey

Don’t know if it has been publicised or not, but on a face to face appointment with my Haematologist last week, she said that the Government were carrying out...

Don’t know if it has been publicised or not, but on a face to face appointment w...

azaelea

•2 years ago

34 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for November 2021

Pegasys/ ET and HRT

Interesting appointment today.

Major surgery with PV

Iron Supplement for Anaemia ?

Can anyone recommend a good haematologist in Ukraine? Specifically, a specialist working with pegylated Interferon-alfa2b?

hydroxyurea and lactose intolerance

I need some help please finding a Dr in Greece

Pruritus. (Extreme itching) .Can no longer shower....

Video of the MPN Voice ‘Virtual’ Patients’ Forum – Belfast, now available to view

Enlarged spleen

Hydroxy curls!

Jabs jabs

10 facts MPN patients need to know about FDA approval of Ropegylated interferon alpha2b (Besremi).

Information on Acute Myeloid Leukaemia

Antibody test update. Good News!

Increasingly outspoken!

Hernia of the spleen

Thank you to Maz and Nona

FDA Approves Ropeginterferon Alfa-2b-njft for Polycythemia Vera

US Ropeg approval!

HU & breathlessness

Has anyone on hydroxy been told why it's so difficult to lose any weight restrictive eating?

Vitamin B12 affecting HCT ?

SCT risks

Some good news...

Wrong culprit?

Hu platelets still rising

Update 5.9

Vaccination

Covid Cancer Survey

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