Posts - MPN Voice | HealthUnlocked

MPN Voice

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All posts for June 2017

Was it Haematology or Mythology?

I had my long waited for follow up visit to my haematologist earlier in the week. I thought I had prepared well for the consultation, in that I prepared a...

I had my long waited for follow up visit to my haematologist earlier in the week...

stillkicking

•8 years ago

18 Replies

Replays of June 24 Town Meeting Now Available!

Great replays now available from last Saturday's very informative MPN town meeting with Drs. Stein (Lurie Cancer Center of Northwestern) and Pemmaraju (MD...

Great replays now available from last Saturday's very informative MPN town meeti...

tclementi

•8 years ago

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Good results today

Good results at my 3-monthly clinic appointment today - platelets 349 with other counts OK too and LFT back to normal 😀 Staying with Pegasys 90mcg every 4...

Good results at my 3-monthly clinic appointment today - platelets 349 with other...

AndyT

•8 years ago

14 Replies

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Schwannamatosis [NF3] or Neurofibromatosis [NF2]

Just had results, testing whether I have one or the other, I have symptoms for both, more tests are lined up, I jokingly said maybe I have NF4? Does not exist,...

Just had results, testing whether I have one or the other, I have symptoms for b...

Adlon57

•8 years ago

5 Replies

Fatigue and pneumonia

10 years ago I contracted pneumonia and was ill for months and never really recovered. After 5 years of repeated visits to GP it was discovered that I had ET...

10 years ago I contracted pneumonia and was ill for months and never really reco...

Garden987

•8 years ago

9 Replies

HELP, PINS AND NEEDLES RETURN

Hello my MPN family, I had terrible pins and needles in my hands, was started on 500mg hydroxy and voila took pins n needles away. Ive been on 1gram now for...

Hello my MPN family, I had terrible pins and needles in my hands, was started on...

Lainy1

•8 years ago

2 Replies

Annoyed at my haematologist's attitude

My platelets are quite high at 1400. At my last apt, they'd gone down to 1100. I was told they'd never go below 1000. I told my Dr I was feeling rubbish, with...

My platelets are quite high at 1400. At my last apt, they'd gone down to 1100. I...

lynnieb

•8 years ago

16 Replies

Psoriasis and raised platelets?

Hi All, I need some advice. I have just had blood tests for an MPN ET, in particular after having raised platelets only 522 so not that bad compared to you...

Hi All, I need some advice. I have just had blood tests for an MPN ET, in partic...

vickyturff

•8 years ago

19 Replies

Dealing with fatigue?

Hi there. I'm compiling the next issue of MPD Life and would love some current stories/tips from MPN patients of how you are dealing with fatigue. If you could...

Hi there. I'm compiling the next issue of MPD Life and would love some current s...

Florence1961

•8 years ago

27 Replies

B12 low

Hello everyone, My vitamin B12 was 41 and I have just finished my loading doses. Go says I have to have them every 2 months now. Does this mean I have...

Hello everyone, My vitamin B12 was 41 and I have just finished my loading doses....

Glammy35

•8 years ago

3 Replies

Anyone out there on PEGASYS Interferon ?

Hi all, I am 54 next month and was diagnosed 3 weeks ago with ET with CALR+ after blood counts of 1220 and 1250. I had my first and very constructive meeting...

Hi all, I am 54 next month and was diagnosed 3 weeks ago with ET with CALR+ afte...

Jocko

•8 years ago

36 Replies

No venesection today

I have just returned from my 8 weekly hospital visit. My diagnosis of PV was in Dec 2015. On each visit except one other and today, I have had a venesection,...

I have just returned from my 8 weekly hospital visit. My diagnosis of PV was in...

Fionnuaghla

•8 years ago

2 Replies

Still Dancing

In the last month platelets have dropped from 1900 to 1605 and today down to 1463 - still a long way to go I know (over 1000) but at last things are moving in...

In the last month platelets have dropped from 1900 to 1605 and today down to 146...

Chris3875

•8 years ago

7 Replies

A naive query?

Hi I am a 64 year old male with psoriatic arthritis. Was on methotrexate but now on a biological therapy via Benepali injections. Over recent months my HG has...

Hi I am a 64 year old male with psoriatic arthritis. Was on methotrexate but now...

James53

•8 years ago

2 Replies

Itching? What itching?

Hi everybody. I have great news. After posting a couple of weeks ago about terrible problems with the itching that we are all prone to, I got lots of great...

Hi everybody. I have great news. After posting a couple of weeks ago about ter...

Splb3317

•8 years ago

13 Replies

Understanding Polycythemia Vera

Here is an informative video on PV. I hope you find it helpful - https://mpncancerconnection.org/2017/04/understanding-polycythemia-vera/ Regards, David - PV...

Here is an informative video on PV. I hope you find it helpful - https://mpncan...

PVReporter

•8 years ago

3 Replies

Yeah bloods down to 940

Just saw heam and bloods down after 4 weeks of hydroxy. I've to increase dose to two a day now. Oh no hope side effects not going to get worse. Keep working...

Just saw heam and bloods down after 4 weeks of hydroxy. I've to increase dose to...

Lainy1

•8 years ago

20 Replies

Newly diagnosed with ET jak2+ and just looking for reassurance

I'm a 38 year old female from Auckland, New Zealand. A couple of months ago I went to the Dr thinking I had low iron to be told my platlets were concerning...

I'm a 38 year old female from Auckland, New Zealand. A couple of months ago I we...

Kris_nz

•8 years ago

16 Replies

MF side effects>

my partner has had MF for 3years now. All that can be done is being done & she gets the best treatment possible in the world. My question is as things progress...

my partner has had MF for 3years now. All that can be done is being done & she g...

digbydivot

•8 years ago

4 Replies

Knee and lower leg swelling..Just taking Hydrox a week..

Hello Everyone, Again, so grateful for this site. Especially being new. Today knees and lower leg swelling. Have elevated and iced. Also, drinking LOTS of...

Hello Everyone, Again, so grateful for this site. Especially being new. Today kn...

jojo20

•8 years ago

6 Replies

Pegasys

Has anyone on Pegasys experienced any episodes of severe dizziness or fainting?

Has anyone on Pegasys experienced any episodes of severe dizziness or fainting? ...

HelenK

•8 years ago

3 Replies

Deaf, a bit Down, but delighted NZ won first 2 America's cup final races!

Ever since going to great lengths at school to avoid sport I have rarely taken much interest in it, however, I do get a little surge of enthusiasm when I see...

Ever since going to great lengths at school to avoid sport I have rarely taken m...

stillkicking

•8 years ago

14 Replies

ET & diet

I know that the general advice is to eat healthily but are there any foods which are particularly helpful or not advisable for anyone with ET? Apparently I'm...

I know that the general advice is to eat healthily but are there any foods which...

ChrisAnnSen

•8 years ago

4 Replies

ET and Vasovagus

Before I was diagnosed with ET JAK2 + nearly two months ago, I was occasionally having visual disturbances, almost passing out, with cold sweats and sometimes...

Before I was diagnosed with ET JAK2 + nearly two months ago, I was occasionally ...

DavidBates

•8 years ago

8 Replies

Repeat blood results !

Hi All just to say , i had repeated blood test after fbc came back with blood infection , so was asked to repeat by Gp B12 Ferritin and folate acid , well i...

Hi All just to say , i had repeated blood test after fbc came back with blood in...

catwoman2015

•8 years ago

11 Replies

ET Diagnosed in 2004 - I blame it on Agent Orange exposure during Vietnam tour in 1968-69.

Platelets increased in early 2000's. I took Hydroxuria from 2004-12. Platelet count is now in normal range. Vietnam era Agent Orange VA claim for ET denied in...

Platelets increased in early 2000's. I took Hydroxuria from 2004-12. Platelet co...

Bippers

•8 years ago

2 Replies

Started to bruise on fingers ?

Was simply just putting a new bin bag in bin after doing dishes (hands warm) and got big throbbing bruise (hematoma)on inside of my finger. Surely my platelets...

Was simply just putting a new bin bag in bin after doing dishes (hands warm) and...

Lainy1

•8 years ago

13 Replies

Two Free Webinars Next Week!

Hi all, Wanted to make sure you were aware of 2 educational opportunities happening next week. Next Wednesday at 12 pm PT, Patient Power is hosting a webinar...

Hi all, Wanted to make sure you were aware of 2 educational opportunities happe...

tclementi

•8 years ago

2 Replies

This is about right!

Is this us??

lizzziep

•8 years ago

7 Replies

Bumpy skull.

Hiya.i have noticed over the past year that my skull has a definate ledge to it at the back, just above the nape of my neck. I wasnt too worried but now i have...

Hiya.i have noticed over the past year that my skull has a definate ledge to it ...

Mollypie

•8 years ago

4 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for June 2017

Was it Haematology or Mythology?

Replays of June 24 Town Meeting Now Available!

Good results today

Schwannamatosis [NF3] or Neurofibromatosis [NF2]

Fatigue and pneumonia

HELP, PINS AND NEEDLES RETURN

Annoyed at my haematologist's attitude

Psoriasis and raised platelets?

Dealing with fatigue?

B12 low

Anyone out there on PEGASYS Interferon ?

No venesection today

Still Dancing

A naive query?

Itching? What itching?

Understanding Polycythemia Vera

Yeah bloods down to 940

Newly diagnosed with ET jak2+ and just looking for reassurance

MF side effects>

Knee and lower leg swelling..Just taking Hydrox a week..

Pegasys

Deaf, a bit Down, but delighted NZ won first 2 America's cup final races!

ET & diet

ET and Vasovagus

Repeat blood results !

ET Diagnosed in 2004 - I blame it on Agent Orange exposure during Vietnam tour in 1968-69.

Started to bruise on fingers ?

Two Free Webinars Next Week!

This is about right!

Bumpy skull.

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