Platelets now at 1336000. Is this OK or should my wife be seen urgently?
jointpain5 months ago
Been over a week since our return from France. My wife saw the GP last Monday, though he knows nothing about MPN he did saw he would refer h...
Let’s make the most of summer while we can
Loubprv5 months ago
I notice that many of you struggle in the heat, as we all seem to.
I love the sun but it no longer loves me, what a b.......... but, you kn...
5 Replies8 Likes
Larger red blood cells than normal
tina65 months ago
Morning all ET jak2 pos, just had a review from docs and now he wants to see me as I now have a larger red blood cells than normal my platel...
Wyebird5 months ago
Hi folks, I’m CALR ET.
Can anyone discribe their lightheadedness symptoms please?Over the last few weeks I have had moments of lightheadedne...
What a good holiday
Superwoman5 months ago
Well folks, my week in glorious Devon was wonderful, such wonderful views from the cottage in Bideford which I hasten to add also had its ow...
17 Replies10 Likes
Struggling in the heat
lynnieb5 months ago
With temperatures in the 30s at the moment, I'm really struggling. The slightest bit of sunshine that touches my skin hurts really badly. It...
Mackydee1235 months agoPOPULAR
So I’m just out of my 2nd blood count since starting Peg, it’s a week early as it’s holiday season...after 6 injections (7th this e...
20 Replies9 Likes
MF and low HGB
Skye3335 months ago
Hi I am early MF but due to worsening itching enlarged spleen and tiredness my haematologist started me on 30mg a day Rux. For the first cou...
Is This Medical Negligence. High Platlet count unknown to myself for 10 years causing mini stroke & Being diagnosed with ET.
Mycancerconcern15 months agoPOPULAR
Hi i wounder if anyone else has experienced the same as myself were GP's have not informed you that your Platlet count is to high and acted ...
26 Replies2 Likes
Pegylated Interferon available in Australia?
CommonDaisy5 months ago
I’m from Melbourne, Aus. Can someone let me know if pegysus (pegylated interferon) is available in Australia?
I’ve been finding confl...
Problems with the sun/heat
Rastavapa5 months ago
I used to love the sun when I used to live in southern Italy it got to the forty's in the summer but since I changed years ago from hydrea t...
13 Replies1 Like
Critical illness claim for essential thrombocythemia
Jbone6365 months ago
Has anyone been able to make a successful claim on critical illness for ET?
9 Replies1 Like
Well that was a surprise - hydration
lizk19935 months ago
Had cardiac review a week past Friday, and as I had haematology the following Wednesday asked for the blood test for that be done at same ti...
5 Replies6 Likes
ET patient with new symptoms (Tightness in chest, shortness of breath)
mustabshra5 months ago
I was diagnosed almost one year before with ET.Currently on plavix only.Recently I developed scarry symptoms. At first they ...
Stevesmum425 months ago
I am wondering if anyone has been in a similar position to myself
I am 75. Diabetic. ET calr for several years , have been on aspi...
Anybody pregnant and on Interferon
Rani365 months ago
Hello, I am Valentina, diagnosed ET, currently 10 week pregnant and just started Iterferon alpha 2b (Intron A). I am a bit scared for my bab...
Pegasys ( peginterferon alfa -2a)
Elab5 months ago
Hope you are coping well in this hot hot weather. ......and drink loads of water .....and gin and tonic 😂😜.
I need your help pls.
Would you continue with this doctor?
Naming no names or surgery. If you have followed my wife's story so far, she had a grade 5 spleen rupture in France on May 1st and after the...
17 Replies2 Likes
Anyone else turned down Hydroxycarbamide?
rdevans5 months agoPOPULAR
I've now hit 60, and have decided to turn down the Hydroxy recommendation - don't want to take a a chemo drug. Will continue aspiri...
28 Replies4 Likes
samwoolrich5 months ago
I was diagnosed with ET Jak2+ last October. I started Hydroxycarbamide in December 500mg weekdays and 1000mg sat and sun. I also take asp...
6 Replies1 Like
ET not cancer, and dental issues
BonnieJ5 months agoPOPULAR
Hi everyone! I am in the USA. I was diagnosed with JAK2+ ET a little over 2 years ago. I saw my new oncologist today and when I mentioned t...
29 Replies3 Likes
Feeling sad, upset, angry and let down after my BMB in NZ
Wentry5 months agoPOPULAR
I'm feeling really sad, upset, angry and let down, I've just sent a complaint to the District Health Board here in Wellington. I got to my a...
Joall6 months ago
Morning. Can anyone give me info on having an iron infusion. How long does it take and is there any side effects?
Rising platelet count and anxious
Whacks6 months ago
I have been following this forum since I was diagnosed with ET calr in 2015 at the age of 41 but this is my first post, so here goes!
Travel Insurance with a SCT pending for MF
RobMa6 months ago
I was amazed to find that the 3 insurance companies I contacted did not care that I have a SCT coming up in August. One didn't even ...
8 Replies1 Like
Encouraging trial results re MF
Paul1234566 months ago
Trial result of Peginterferon combined with Ruxo. Worked especially well for early stage MF patients although side effects/20% discontinuati...
9 Replies6 Likes
VonWillebrand and Pegasys Interferon
2017S6 months ago
I recently saw a specialist in NYC. At the appointment they said I should remain on my baby aspirin a day and wouldn't need trea...
Anyone else in "limbo land" for years?
fernie6 months ago
Hi everyone, I've been reading on and off for a number of years and not really knowing if I belong here. My platelets started to go up abo...
Graham76946 months ago
Had my first haemo appointment today since starting Ruxolitinib 2 1/2 weeks ago. My bloods were all good and my platelets have moved down (a...
9 Replies8 Likes
Raynauds and high platelets
Stanley286 months ago
Hello - I have ET and am on aspirin. I have recently developed Raynauds syndrome (my fingers become very painful and turn white, red or blue...
7 Replies2 Likes
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