Posts - MPN Voice | HealthUnlocked

MPN Voice

10,438 members • 14,388 posts

All posts for September 2023

HYDROXY / IFN - long term effects

Hello, I really appreciate the information you all bring to the site. My daughter, 17 yrs old was diagnosed JAK2+ ET two years ago. It has been challenging...

Hello, I really appreciate the information you all bring to the site. My daught...

Piperpeeps

•7 months ago

14 Replies

best MPN specialists in NYC?

Hi everyone, I have PV. I live outside the city - and I'm under the care of a local hematologist. I think she's good, but she's not an MPN specialist. I'd...

Hi everyone, I have PV. I live outside the city - and I'm under the care of a ...

souplover

•7 months ago

4 Replies

covid vaccination

I was wondering if most people are having the covid vaccine ?

Juliet46

•7 months ago

69 Replies

Want to take advantage of all our features? Just log in!

low platelets

My bloods came back with platelets considerably low at 83 10*9 L. Bottom of normal range for the lab is 135. Two weeks ago they were at 112. They have...

My bloods came back with platelets considerably low at 83 10*9 L. Bottom of ...

artydutch

•7 months ago

8 Replies

Besremi in France?

Hi all, I mentioned Besremi to my hematologist (as I am not tolerating Peg well). He knew about it, but said it was not available in France yet. :( I asked if...

Hi all, I mentioned Besremi to my hematologist (as I am not tolerating Peg well)...

JustKeepSw1mming

•7 months ago

12 Replies

Being taking off Pegasys. :( Looking for alternatives

Hi all, I have ET & PV with Jak2. I am 40. I have been on aspirin for over 10 years, but had to start Pegasys 3 months ago. I haven't tolerated it well....

Hi all, I have ET & PV with Jak2. I am 40. I have been on aspirin for over 10 y...

JustKeepSw1mming

•7 months ago

15 Replies

Neutrophonics?

My wife's platelets dropped from 1280 to 600s over two years. The last test was a sudden and welcome drop to 350 thanks to HU. However, at the same time the...

My wife's platelets dropped from 1280 to 600s over two years. The last test was...

Whitegate

•7 months ago

3 Replies

Looking for an MPN specialist near Washington DC

Living in Northern VA and looking for a local-ish MPN specialist recommendation. Not having any luck with local hematologist oncologists being well-informed...

Living in Northern VA and looking for a local-ish MPN specialist recommendation....

110srh

•7 months ago

9 Replies

constipation anyone ? Here’s a good solution

hi everyone I ve read here and there posts regarding constipation. If you’re affected you might like to try my homemade rocket muesli! I prefer to make my own...

hi everyone I ve read here and there posts regarding constipation. If you’re aff...

Loubprv

Volunteer•7 months ago

9 Replies

Blood Results

Am I the only person who struggles to get my own blood results? When I used to get my bloods done by my local practice nurse she always printed off the...

Am I the only person who struggles to get my own blood results? When I used to g...

Tartanlady

•7 months ago

29 Replies

Fingers Crossed 🤞

I’ve managed to speak to my GP (well, locum) this afternoon and asked for him to refer me to Professor Harrison, he said a letter had been sent in August from...

I’ve managed to speak to my GP (well, locum) this afternoon and asked for him to...

lizzziep

•7 months ago

11 Replies

bone pain in PMF

I’ve had PMF for approx 12 years with no real symptoms. I am now experiencing extreme sweating & itching & intermittent shooting bone pains in legs. My bloods...

I’ve had PMF for approx 12 years with no real symptoms. I am now experiencing ex...

Itch

•7 months ago

7 Replies

hydroxy and aging

Do you think hydroxy ages you? I’m on 6000mg a week and I feel I’ve aged so much the last couple of years.. My hair is so thin and doesn’t take the tint any...

Do you think hydroxy ages you? I’m on 6000mg a week and I feel I’ve aged so muc...

Cokopops

•7 months ago

53 Replies

Jakafi

It has been two weeks that I am taking one pill a day. My hemoglobin today was an8 and last week was 11 ,has anyone had a drop like this and one week with...

It has been two weeks that I am taking one pill a day. My hemoglobin today was ...

Ggrana3192

•7 months ago

5 Replies

integrated cancer care appointment

I have appointment At university Hospital London in October. It ties in nicely with one at Guys . Booked transport and place to stay. I got another...

I have appointment At university Hospital London in October. It ties in nicely ...

Mostew

•7 months ago

11 Replies

Medication

I have just had a consultation with my haematologist ,last visit in August revealed my hemocrit was a bit low they said to have one 500 grams of...

I have just had a consultation with my haematologist ,last visit in August revea...

ChillyAsh34

•7 months ago

1 Reply

Hyperbaric Chamber for PV

I would like to know something about this issue but I dont find any paper. Do you know anything about it? Thanks

I would like to know something about this issue but I dont find any paper. Do yo...

SoledadBarcelona

•7 months ago

7 Replies

Bone marrow biopsy

I had my first BMB yesterday and wanted to reassure people who probably like myself are dreading it!! I can assure you it was nothing!! I felt no pain just...

I had my first BMB yesterday and wanted to reassure people who probably like mys...

Presley1935

•7 months ago

8 Replies

Reducing / eliminating sugar

hi just wondering what information anyone has on sugar and blood cancers ? I am trying to be good about reducing sugar .. wondering what tips anyone has??...

hi just wondering what information anyone has on sugar and blood cancers ? I am ...

Threestreams

•7 months ago

23 Replies

Confusion about MPN. Please help

I posted this on Reddit and a kind user referred me to this forum, so here I am… I’m 36 and have had chronically high platelets since my early 20’s...

I posted this on Reddit and a kind user referred me to this forum, so here I am…...

Macch1493

•7 months ago

5 Replies

Anagrelide in UK and in the USA😱

My long suffering wife has been taking Anagrelide and a little hydroxycarbamide for five years now. During these five years she has endured numerous upper GI...

My long suffering wife has been taking Anagrelide and a little hydroxycarbamide ...

jointpain

•7 months ago

3 Replies

Bone Marrow Biopsy

Hi, Diagnosed with ET and JAK2+ 14/9. Next appointment 2/11. Platelet levels have not been particularly high. Haematology Specialist Registrar phoned...

Hi, Diagnosed with ET and JAK2+ 14/9. Next appointment 2/11. Platelet levels...

Carol0925

•7 months ago

5 Replies

Besremi & depression

I began Besremi about 4 months ago and at first I felt more like myself than I have in quite awhile. The past month or two I'e felt some depression, feeling...

I began Besremi about 4 months ago and at first I felt more like myself than I h...

givingITMybest

•7 months ago

6 Replies

Still waiting …

Quite a while ago I asked my haematologist to refer me to Professor Harrison at Guys, he says he now has eventually sent a letter via ‘snail mail’ ( royal...

Quite a while ago I asked my haematologist to refer me to Professor Harrison at ...

lizzziep

•7 months ago

23 Replies

newly diagnosed queries

Hi, recently diagnosed with ET, to say I was shocked is an understatement, as platelets elevated slightly 460 & JAK2 positive results was a surprise to...

Hi, recently diagnosed with ET, to say I was shocked is an understatement, as p...

NickyRobinson

•7 months ago

10 Replies

Anagrelide heart palpitations/pounding

I started taking Angerlide a few weeks ago and still take 1 Hydrea a day. The only side effect I have noticed is the feeling of my heart pounding. Does this...

I started taking Angerlide a few weeks ago and still take 1 Hydrea a day. The on...

Zeppelin11

•7 months ago

15 Replies

Not diagnosed yet

I'm 61 years old, female. I recently went for a routine PE and when my labs came back, the doctor said "we need to watch your WBC". I was surprised and...

I'm 61 years old, female. I recently went for a routine PE and when my labs c...

Fallorange

•7 months ago

8 Replies

Diagnosed 2015 complete CBC has changed

last phlebotomy was in June of 2023, since then my HCT is stuck @ 39, HGB is now @ 11.9, MCV,MCH,MCH are dropping each month, RBC is stable @ 5. My ferritin...

last phlebotomy was in June of 2023, since then my HCT is stuck @ 39, HGB is now...

Pickleball11

•7 months ago

17 Replies

immune system

Hi Everyone Can anyone tell me what affect Pegasys has on the immune system. A few tears ago I had a positive ANA and Anti-Ro blood test, was seen by a...

Hi Everyone Can anyone tell me what affect Pegasys has on the immune system. A...

lindyloulou

•7 months ago

19 Replies

Covid

I started to have cold symptoms a week ago and took a test which was negative. Felt like the worse cold ever - terrible muscle aches, cough and congestion....

I started to have cold symptoms a week ago and took a test which was negative. F...

Wesleygrange2a

•7 months ago

32 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for September 2023

HYDROXY / IFN - long term effects

best MPN specialists in NYC?

covid vaccination

low platelets

Besremi in France?

Being taking off Pegasys. :( Looking for alternatives

Neutrophonics?

Looking for an MPN specialist near Washington DC

constipation anyone ? Here’s a good solution

Blood Results

Fingers Crossed 🤞

bone pain in PMF

hydroxy and aging

Jakafi

integrated cancer care appointment

Medication

Hyperbaric Chamber for PV

Bone marrow biopsy

Reducing / eliminating sugar

Confusion about MPN. Please help

Anagrelide in UK and in the USA😱

Bone Marrow Biopsy

Besremi & depression

Still waiting …

newly diagnosed queries

Anagrelide heart palpitations/pounding

Not diagnosed yet

Diagnosed 2015 complete CBC has changed

immune system

Covid

Search posts

Pinned Posts

Latest poll

What age were you when your MPN was diagnosed?

Topics

Archive