Sksarja year ago
Merry Christmas and a very Happy New Year to Everyone
8 Replies1 Like
E T and Vitamin d
linphya year ago
Hello everyone, wondering if anyone else is low on vitamin d. I was seen in immunology this week. My consultant is shocked I'm still walking...
Happy Christmas to everyone
Sand-Dancera year ago
So here we are it's Christmas Eve and this years almost done
We've laughed, we've cried and tried our best our trials to overcome.
5 Replies16 Likes
Travelling abroad with ET
Spearsey89a year ago
Hi there, my mum has recently been diagnosed with ET and been put on a relatively low dose of HU. She's 71 but still likes to regularly trav...
To my MPN family
lighta year ago
Wishing you Merry Christmas and Happy New Year.
May God shower over us all healing, comfort and peace blessings.
1 Reply7 Likes
Trying to Hibernate
JediRejecta year agoPOPULAR
Hello All, it's been a good while since I posted and some of my long standing Forum friends might be wondering if I'm still kicking and brea...
31 Replies10 Likes
Consultation with a Private Doctor
Searcher56a year agoPOPULAR
I am 61 and have ET. I was on 2x500mg Hydroxy plus 75mg Aspirin. I stopped taking it in September. In December I went to see a private do...
22 Replies8 Likes
Merry X-mas LGBT Cancer Community new to this MPN group
Toshabeatthisa year ago
Hello and Merry X-mas to all new to this site glad to know there is a LGBT communtity with Cancers. I have PV (Polycythemia Vera) much to le...
5 Replies3 Likes
Jak 2 Negative 😕 confused 0klahoma, USA Bone marrow biopsy?? 😨 told i was diagnosed with Polycythemia Vera 2 years prior.. 😕
It's been awhile since i wrote a brief post or concern. Having a bone marrow biopsy on the 8th January 2018.. Hard to believe 2 years since ...
5 Replies2 Likes
Dr. Michael Grunwald, ASH 2017 Patient Reported Symptom Burden and Peripheral Blood Counts Among PV Patients - First Interview in Series
PVReportera year ago
"Surprising Findings" from the REVEAL Study - pvreporter.com/blog/dr-mich...
Happy holidays to y'all! (that is a Southern...
Be the first to reply1 Like
Not yet Hydroxy !!
BloodZeroa year agoPOPULAR
Im new here and have started reading posts. Im surprised to hear that some go on Hydroxy when their platelets are under 1000. Some even unde...
21 Replies3 Likes
Garden987a year ago
I wonder if any of you are experiencing "reversed body times. My sleep pattern is interrupted quite frequently by sweating but I usually g...
Hydroxy is doing it's thing!
Mica11a year agoPOPULAR
Good news. Saw my consultant yesterday and after doubling my meds a month ago my platelets have come down by over 200 and I don't have to go...
20 Replies3 Likes
Hope you have a happy ,healthy ,Christmas ,lots of love sent to you all for good luck in the new year ...
Twinklya year ago
Well folks ..it's another year older ,maybe a little bit wiser .i do hope so !
I went to a day surgery unit on Friday .i had a spot come up...
12 Replies8 Likes
Ovingitea year ago
I hope I'm not transgressing by posting this here, but I'm guessing that many of you will be trying to keep up to date with the latest MPN r...
Starting on Hydrea
Janet46a year ago
Went to haematology clinic yesterday my blood count was up from 39.6 3 weeks ago to 46.5 so a venesection is booked for Friday. My platelets...
13 Replies1 Like
MPN information diets etc
Rachelthepottera year ago
The US analogue of our MPNVoice is the mpn research foundation. They do some good ( and reliable) patient info on MPNs and include dietar...
Bone Marrow Biopsy
Jen76a year ago
Hi I have been told I will probably need a bone marrow biopsy despite being JAK2 positive. Can anybody give me any advice about this procedu...
urea and dementia
catkinspolymera year ago
answer from Prof Cooper
Thanks for your kind message.
I am unaware of an association between hydroxyurea and dementia.
What we ha...
1 Reply5 Likes
Is ET the same as PV?
Starfire1970a year ago
My hemotologists spoke of both ET and PV, but my medical record had Erythrocytosis as my diagnosis. He tested for Jak2, haven't heard yet ab...
Ginger for inflammation
Skye333a year ago
I rececently read a post about inflammation, of course stupid me can’t find it but I have just seen this on Facebook and thought I’d give it...
3 Replies3 Likes
Hiddena year ago
I wish I could write a happier post but for the last two years I have become increasingly fearful about going out in case I " catch " someth...
7 Replies1 Like
friendofpigleta year ago
First of all, here's wishing you all a happy Christmas.
I had a 24 hour ambulatory BPM the other day and it seems my diastolic pr...
Paul123456a year ago
Is it useful if we pool our shared experiences on how to minimise symptoms into one tread?
My ‘tips’ would be (and no science here!)
8 Replies2 Likes
Murry33a year ago
Has anyone on here taken Jakafi and if so what results and side effects have you had?
CBD Oil. Does it affect platelets???
130396a year agoPOPULAR
I did post about this earlier this year but unfortunately I didn’t get much in the way of responses.
Does using CBD OIL have any aff...
34 Replies5 Likes
Kat666a year ago
I would like to wish everyone in MPN a great Christmas 🎄 and a Healthy New Year x Don't post often but read all your posts and find them in...
2 Replies4 Likes
Urea on the brain leading to dementia
For those of you that follow the medical Science, World Prof Garth Cooper of Manchester University has show that high levels of Urea in the ...
Superwomana year ago
This is just to wish all my MPN family a very merry Christmas and a very healthy and happy New Year.
7 Replies7 Likes
Happy Christmas and... a plea for help regarding gout or something like it?!
stillkickinga year ago
First a Happy Christmas to everyone. Thank you for your help over the last few months that I have been visiting this forum. I don't...
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