New to chemo. Why no choice?
PenelopeMKa day ago
I have already posted replies but does this mean that my other posts didn't go on the site because I hadn't yet seen my email to verify my e...
9 Replies1 Like
HYDROXICARBOMIDE NAIL FATIGUE
ashby77632 days ago
Hi Gang, just a quick update on the state of my nails. Well good news, after using the CND nail varnish stuff I can honestly say, what a tra...
4 Replies7 Likes
Confusion over polycythemia causes
Elcee2532 days ago
I have recently been seeing a haematologist due to high haemoglobin, haemocrit and red blood counts. I went to the doctor last s...
Criteria for diagnosing ET!
Sarahjane1002 days agoPOPULAR
Hello, sarahjane here. I have just had my 2nd heamotoligist appointment, and feeling frustrated and uninformed! My platelet level is 591 rig...
39 Replies1 Like
Pippa632 days ago
Hi everyone . I previously did a post regarding a rash or red spots on my lower legs which some of you kindly replied to ....the rash itsel...
8 Replies1 Like
Annie463 days ago
I’m on hydroxy & aspirin for ET & am Jak2+. I have random episodes where suddenly my gums bleed for no reason . It’s unrelated to eating, ex...
ET is back after years in remission.
CommonDaisy3 days ago
I have just joined this forum because reading your experiences and seeing your support for each other has kept my anxiety at bay these...
10 Replies1 Like
Chelle_3 days ago
Folks, I've been given this blasted Sando K (low potassium) to drink for the next 10 days - it is horrific. I already take 3 other liquid me...
15 Replies2 Likes
Hydrea over age 65 ET
Meatloaf94 days agoPOPULAR
Wondering if anyone over age 65 with ET is not being treated with meds for their condition. I am 68 with Jak2+ ET and my platelets b...
25 Replies2 Likes
Kelly24 days ago
Any of you ladies know if we are allowed to have microblading semi permanent brow tattoo? I read somewhere that when on drugs it is not allo...
Feeling 110 🤪
Sand-Dancer5 days ago
Ok, so I look 90 and feel 110 after a days travelling but hey we’re here and enjoying coffee in the sunshine 😊. Hope you all have a fabulou...
12 Replies12 Likes
LucyGeering5 days ago
What do you take when your spleen’s hurting? Mine’s been tweaking since January, and has now started aching enough to stop me sleeping at ni...
6 Replies1 Like
Thoughts on starting Hyroxyurea? #'s 500-600 so far, but numbness in hands, and jawline/face?
JenngeetingR8285 days ago
Would love to get in input from others - as my HM team, seems to be unfamiliar with the updated data provided on the MPNResearch Foundation...
18 Replies1 Like
JaynieQ6 days agoPOPULAR
Does anyone else suffer? Mine are driving me crazy, particularly at night. I get bad foot cramps too.. I’ve ET Jak neg, just taking aspirin ...
49 Replies1 Like
Off to Portugal tomorrow
Sand-Dancer6 days agoPOPULAR
Just thought I’d leave you with this - 😊
34 Replies26 Likes
Fionnuaghla6 days ago
I posted on here on Wednesday last, after my hospital appointment. I received kind and useful replies, all of which I acknowledged individu...
14 Replies7 Likes
Mental Tiredness and Anxiety
isimmy7 days agoPOPULAR
Hi. My name is Ian and I was diagnosed with ET in 2004. Until September 2018 my treatment was limited to 6 monthly hospital check ups and d...
2016 WHO diagnostic criteria for MPNs
Rachelthepotter7 days ago
Hi This is a link link the current diagnostic criteria for MPNs. Its from Nature.
12 Replies8 Likes
Good article on Pacritinib
Paul1234567 days ago
7 Replies2 Likes
Impact of diet on symptom burden
Interesting, especially alcohol associated with lower symptom burden. I’ll drink to that if I’ve read it correctly!
6 Replies5 Likes
Need some coping advice.
Kinsalelady7 days agoPOPULAR
Good day all. I never post but do read all posts daily and send prayers. I was diagnosed with Jak2 PV several years ago. So far managing it ...
30 Replies1 Like
ET and PV?
rlwarren7 days ago
I am newly diagnosed with ET and due to start treatment next week. I’m JAK2 positive and slowly getting my head around this condition.
EleanorPV8 days ago
A pleasant surprise. My bloods haven’t moved since my venesection in January. I’ve been on Pegasys 16 months. My HCT is 38, perfect for my ...
7 Replies4 Likes
Hello from North Carolina USA
PamelaNC8 days ago
As of today, I have been officially diagnosed with ET following the results of my BMB and bloodwork. My name is Pam and I am a 62 year old w...
5 Replies2 Likes
Joerp8 days ago
Quick question. Those of you on peg interferon, how long and on what dose did you start to see results in platelet reduction?
Consultant appointment - ET
Garden9878 days ago
Need a rant everyone! Have just come home from seeing specialist having had hospital transport. Waited from 10.30 til 12.40 to see him. ...
6 Replies2 Likes
ONWARDS AND UPWARDS !!
JediReject8 days agoPOPULAR
Hi Folks , I know it's been a while since I posted an update for those of you who have been following my progress both before and after my S...
57 Replies25 Likes
Consultant has brought my appt forward.
jillydabrat9 days ago
I telephoned my haemotology consultant and spoke to her secretary about my slurring speech (which has now abated) and I got a call yesterday...
9 Replies5 Likes
Basal cell skin cancer recurrence: anyone else had similar thing happen
Rachelthepotter9 days ago
Hi. I’ve got myelofibrosis and I’ve been on ruxolitinib and epo and apart from some weight gain and chest pains I’m doing OK.
However I’d ...
Newly Diagnosed (9/2017) with PV and ET
bmboulanger9 days ago
I'm newly diagnosed with both PV and ET and still learning about the symptoms and treatments. Once diagnosed, my hematologist asked that I ...
4 Replies3 Likes
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