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MPN Voice

10,445 members • 14,398 posts

All posts for December 2017

Merry X-mas LGBT Cancer Community new to this MPN group

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 learn about been...

Hello and Merry X-mas to all new to this site glad to know there is a LGBT commu...

Toshabeatthis

•6 years ago

5 Replies

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 the day diagnosed....

It's been awhile since i wrote a brief post or concern. Having a bone marrow bio...

Toshabeatthis

•6 years ago

6 Replies

Dr. Michael Grunwald, ASH 2017 Patient Reported Symptom Burden and Peripheral Blood Counts Among PV Patients - First Interview in Series

"Surprising Findings" from the REVEAL Study -...

PVReporter

•6 years ago

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Not yet Hydroxy !!

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 under 500. Im guessing...

Im new here and have started reading posts. Im surprised to hear that some go on...

BloodZero

•6 years ago

24 Replies

Body clock

I wonder if any of you are experiencing "reversed body times. My sleep pattern is interrupted quite frequently by sweating but I usually get up at 7.OO a.m....

I wonder if any of you are experiencing "reversed body times. My sleep pattern...

Garden987

•6 years ago

9 Replies

Hydroxy is doing it's thing!

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 back for 8 weeks!...

Good news. Saw my consultant yesterday and after doubling my meds a month ago my...

Mica11

•6 years ago

20 Replies

Hope you have a happy ,healthy ,Christmas ,lots of love sent to you all for good luck in the new year ...

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 on my right hand...

Well folks ..it's another year older ,maybe a little bit wiser .i do hope so ! ...

Twinkly

•6 years ago

12 Replies

Athens access?

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 research, so may...

I hope I'm not transgressing by posting this here, but I'm guessing that many of...

Ovingite

•6 years ago

5 Replies

Starting on Hydrea

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 are down but still...

Went to haematology clinic yesterday my blood count was up from 39.6 3 weeks ago...

Janet46

•6 years ago

13 Replies

MPN information diets etc

Hi The US analogue of our MPNVoice is the mpn research foundation. They do some good ( and reliable) patient info on MPNs and include dietary and exercise...

Hi The US analogue of our MPNVoice is the mpn research foundation. They do some...

Rachelthepotter

•6 years ago

1 Reply

Bone Marrow Biopsy

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 procedure, is it painful?...

Hi I have been told I will probably need a bone marrow biopsy despite being JAK2...

Poppy112

•6 years ago

14 Replies

urea and dementia

answer from Prof Cooper Dear Chris, Thanks for your kind message. I am unaware of an association between hydroxyurea and dementia. What we have been...

answer from Prof Cooper Dear Chris, Thanks for your kind message. I am unaw...

catkinspolymer

•6 years ago

1 Reply

Is ET the same as PV?

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 about that, I see him...

My hemotologists spoke of both ET and PV, but my medical record had Erythrocytos...

Starfire1970

•6 years ago

12 Replies

Ginger for inflammation

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 a go. Anything to...

I rececently read a post about inflammation, of course stupid me can’t find it b...

Skye333

•6 years ago

3 Replies

Fearful

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 " something . It's got to...

I wish I could write a happier post but for the last two years I have become inc...

Hidden

•6 years ago

7 Replies

Hypertension medication

Hi everyone. 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 pressure is a shade...

Hi everyone. First of all, here's wishing you all a happy Christmas. I had a 24 ...

friendofpiglet

•6 years ago

12 Replies

Tips/advice

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!) To combat itchy legs post...

Is it useful if we pool our shared experiences on how to minimise symptoms into ...

Paul123456

•6 years ago

8 Replies

Jackifi

Has anyone on here taken Jakafi and if so what results and side effects have you had?

Has anyone on here taken Jakafi and if so what results and side effects have you...

Murry33

•6 years ago

16 Replies

CBD Oil. Does it affect platelets???

Hello all 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 affect on......

Hello all I did post about this earlier this year but unfortunately I didn’t get...

130396

•6 years ago

36 Replies

Christmas 🎄

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 informative x😊🎄

I would like to wish everyone in MPN a great Christmas 🎄 and a Healthy New Year...

Kat666

•6 years ago

2 Replies

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 brain can lead to...

For those of you that follow the medical Science, World Prof Garth Cooper of Man...

catkinspolymer

•6 years ago

8 Replies

Merry Christmas

This is just to wish all my MPN family a very merry Christmas and a very healthy and happy New Year. Jean

This is just to wish all my MPN family a very merry Christmas and a very healthy...

Superwoman

•6 years ago

7 Replies

Happy Christmas and... a plea for help regarding gout or something like it?!

Dear All, 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 always comment...

Dear All, First a Happy Christmas to everyone. Thank you for your help over the...

stillkicking

•6 years ago

12 Replies

246810

any one with polycythanemia had a hip replacement

Hidden

•6 years ago

21 Replies

james

hi I am a 64 year old male I have polycythanemia ruby Vera primary I have to have a hip replacement soon suergon said there is a risk of blood clots and...

hi I am a 64 year old male I have polycythanemia ruby Vera primary I have to hav...

Hidden

•6 years ago

8 Replies

sensitive to HU ?

Hi everyone just want to wish everyone on this forum a very happy Christmas and most of all a healthy one ! Also a big thank you to Maz and the team for all...

Hi everyone just want to wish everyone on this forum a very happy Christmas and ...

catwoman2015

•6 years ago

4 Replies

Recently diagnosed.

Hi, I am a 48 year old female who has been recently diagnosed with MPN- ET (JAK2) I had a brain hemorrhage earlier this year and the blood disorder was...

Hi, I am a 48 year old female who has been recently diagnosed with MPN- ET (JAK2...

Atlantic5

•6 years ago

13 Replies

Hydroxycarbamide & nauseous

I started on Hydroxycarbamide earlier this week, I feel ok ish!!! But do have a constant nauseous feeling, can anyone suggest anything to take which might help...

I started on Hydroxycarbamide earlier this week, I feel ok ish!!! But do have a ...

Sueworthington

•6 years ago

8 Replies

Sticky Eyes / Dry Nasal Passage

Does anyone else suffer from dry eyes & nose who are on Hydroxycarbamide? Or have I got something else going on that I should see my GP. (Added later. . . I...

Does anyone else suffer from dry eyes & nose who are on Hydroxycarbamide? Or hav...

Raphael_UK

•6 years ago

6 Replies

Platelets went down, only on aspirin

Hi everyone, just wanted to update , today I visited my haemotologist. 3 weeks b4 my platelets were 1067, n.today they reduced to 946..I am so excited, bcz I...

Hi everyone, just wanted to update , today I visited my haemotologist. 3 weeks b...

mustabshra

•6 years ago

6 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for December 2017

Merry X-mas LGBT Cancer Community new to this MPN group

Jak 2 Negative 😕 confused 0klahoma, USA Bone marrow biopsy?? 😨 told i was diagnosed with Polycythemia Vera 2 years prior.. 😕

Dr. Michael Grunwald, ASH 2017 Patient Reported Symptom Burden and Peripheral Blood Counts Among PV Patients - First Interview in Series

Not yet Hydroxy !!

Body clock

Hydroxy is doing it's thing!

Hope you have a happy ,healthy ,Christmas ,lots of love sent to you all for good luck in the new year ...

Athens access?

Starting on Hydrea

MPN information diets etc

Bone Marrow Biopsy

urea and dementia

Is ET the same as PV?

Ginger for inflammation

Fearful

Hypertension medication

Tips/advice

Jackifi

CBD Oil. Does it affect platelets???

Christmas 🎄

Urea on the brain leading to dementia

Merry Christmas

Happy Christmas and... a plea for help regarding gout or something like it?!

246810

james

sensitive to HU ?

Recently diagnosed.

Hydroxycarbamide & nauseous

Sticky Eyes / Dry Nasal Passage

Platelets went down, only on aspirin

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