Holidaying at altitude
SueYoung2 years ago
It's a month till my haematology appointment and I was thinking of asking my Haematologist about holidaying at altitude. Can anyone tell me ...
My Great North Run Number has arrived 🚶🏻🏃🏅🎖👟
Phelpsy2 years agoPOPULAR
Well it's afficial,
No backing out now ,
Only 4 weeks to the off
Trainings going well , 🏅🙏🏃👟
WISH ME LUCK
EVERY STEP IS HOPEFULLY NEARER ...
23 Replies2 Likes
Unexplained secondary PV
Mckenzie072 years ago
I was diagnosed with secondary polycythemia 16 years ago. I am a smoker but smoke at the most a pack a day years ago. I am quitting... My...
17 Replies1 Like
BeckyM42 years ago
Hello, all! I just had to share that my oldest son, Joe, got married last weekend! We were blessed with great weather and no major issues. ...
Great North Run for MPN Voice - update
Chrissie28852 years ago
My update on Great North Run training. Today I managed my first 10 mile race in South Shields and last Sunday my first Darlington 10k race....
2 Replies1 Like
Jennifer19742 years agoPOPULAR
My last cbc 3 weeks ago showed normal blood counts for everything except my platelets which were 616. Since then I've been diagnosed with MP...
22 Replies1 Like
MPN Voice Nottingham Support Group Guest speakers confirmed for August, September, October and November meetings, and Cake Sale
Mazcd2 years ago
August 17th - Jayne Mills, Clinical Psychologist at the City Hospital, topics will include living with a chronic disease, cop...
Be the first to reply1 Like
light2 years ago
HACKING INTO CANCER’S SPREAD
Even as researchers design more-potent cancer therapies, they face a major challenge in making sure the drugs af...
1 Reply4 Likes
mhos612 years ago
I wonder if you could ask Proffessor Harrison a question on my behalf?. It regards platelet counts at the lower end of abnormal.
MPN Voice Patients’ Forum – Inverness
Friday 28th October 2016, 10 am - 2 pm, registration from 9.30 am
Eden Court Theatre, Bishops Road, Inverness, IV3 5SA
The forum will be held ...
Spotlight on: MPN Cancer Connection (MPN-CC)
krayburn2 years ago
Interview with David Wallace, publisher of the PV Reporter, about starting a new endeavor with his non-profit MPN Cancer Connection (MPN-CC)...
MarkD67012 years ago
I just wondered if anyone else does a Parkrun on Saturday morning? I've found it's a great way to keep up my fitness and I certainly fee...
3 Replies1 Like
When is it time for a change?
Hidden2 years agoPOPULAR
I'm 44, JAK negative with ET and currently only on a low dose aspirin regimen. I saw my hematologist yesterday and my platelets have...
Still got nasty toes!? Advice please.
lizzziep2 years ago
I'm now off Hydroxycarbamide (less than a week) and on Anagrelide. My toes are still a mess. The "oldest" is starting to dry, but Now my big...
Help. Thyroid Cancer Survivor now MPN Survivor?
The doctor just called. I'm Jak2+ . I'm 41 years old. I have a 22 month son and found out my platelets were elevated (507) at my prenatal ap...
CRP blood test
Aime2 years ago
Hope you are well. I have written this as a post rather than asking you directly as I know the last time I mentioned it, there were o...
Bone Marrow Biopsy results question.
kentuckyrain2 years ago
Sorry if this is a silly question. When checking the bone marrow for ET what are they looking for? My daughter just had her first one in th...
Hydroxy/seems to make me go into v deep sleep problem last night I was almost sleep walking
jeanr2 years ago
Hi everyone;: I'm on hydroxy the 500 1 pill a day I take at night. I've been on it for about a year with no problem. I find usually I fall a...
19 Replies1 Like
Weight gains & chest pains???
socrates_82 years agoPOPULAR
It's been almost 5 calendar months since I first learned of my MPN, and what has become increasingly disturbing is my weight ...
Bone Marrow Biopsy on Warfarin
RobinBrum2 years ago
Pick your brains, please? I'm PV for at least 6 years; diagnosed after repeated DVTs while warfarinised. I take a daily dose of 9-10mg warf...
problems with Rux : erythropoietin?
jane132 years ago
Hi, have higher risk MF, been on Rux for 3 months. Initially on 15mg x 2 per day and felt GREAT! However, Hb counts have fallen consistently...
First Day on Anagrelide!
I've seen the haematologist today, managed to get an appointment a week early after I phoned the specialist nurse and told her about my mess...
Any news on Jane65
crapaud2 years ago
Does anyone have any news about Jane65?
It's been about a month now.
Bye for now.
3 Replies2 Likes
Ruxolitinib & GvHD
I've been on higher doses of cortisone the last month or so to get over a chronic GvHD in my liver, after initial improvement things have re...
16 Replies2 Likes
Osteoporosis drugs and ET
DH652 years ago
Can we take osteoporosis drugs while on HU? Are there some we can't take?
I'm feeling rather depressed as now one more drug. Is anyone doing ...
Foss332 years ago
I have PV and wondered if any of you ladies out there know if it is safe to have contraceptive injections or implant? Thanks in advance
Sharing my good news
I feel the need to share my good news with everyone. I have been to the haematologist this morning and my platelets are now down to 288 (fro...
19 Replies8 Likes
Hidden2 years ago
Hi all , can anyone tell me if hair shedding in us women Is also a symptom of having MPN ? mine has got worse and this is before i start on ...
Have you tried Pomi,T.. It's a cancer supplement
Twinkly2 years ago
Talking about diet and good supplement ,s . This is one I have tried with good results ..
17 Replies4 Likes
katiewalsh2 years ago
In a recent edition of CURE magazine, it was reported that acupressure effectively reduced fatigue in breast cancer patients. The patients ...
10 Replies1 Like
Start a Community