Posts - MPN Voice | HealthUnlocked

MPN Voice

10,445 members • 14,398 posts

All posts for August 2016

Holidaying at altitude

It's a month till my haematology appointment and I was thinking of asking my Haematologist about holidaying at altitude. Can anyone tell me what the risks are?...

It's a month till my haematology appointment and I was thinking of asking my Hae...

SueYoung

•8 years ago

5 Replies

My Great North Run Number has arrived 🚶🏻🏃🏅🎖👟

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 TO A CURE FOR...

Well it's afficial, No backing out now , Only 4 weeks to the off Trainings go...

Phelpsy

•8 years ago

23 Replies

Unexplained secondary PV

Hi, 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 question is,...

Hi, I was diagnosed with secondary polycythemia 16 years ago. I am a smoker but ...

Mckenzie07

•8 years ago

17 Replies

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Exciting weekend!

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. (although my...

Hello, all! I just had to share that my oldest son, Joe, got married last weeke...

BeckyM4

•8 years ago

6 Replies

Great North Run for MPN Voice - update

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. Very pleased as I...

My update on Great North Run training. Today I managed my first 10 mile race in...

Chrissie2885

•8 years ago

2 Replies

Spaced Out?

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 MPN JAK 2+ ..working...

My last cbc 3 weeks ago showed normal blood counts for everything except my plat...

Jennifer1974

•8 years ago

22 Replies

MPN Voice Nottingham Support Group Guest speakers confirmed for August, September, October and November meetings, and Cake Sale

Guest speakers August 17th - Jayne Mills, Clinical Psychologist at the City Hospital, topics will include living with a chronic disease, coping...

Guest speakers August 17th - Jayne Mills, Clinical Psychologist at the City Ho...

Mazcd

Partner•8 years ago

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New discoveries!

HACKING INTO CANCER’S SPREAD Even as researchers design more-potent cancer therapies, they face a major challenge in making sure the drugs affect tumors...

HACKING INTO CANCER’S SPREAD Even as researchers design more-potent cancer thera...

light

•8 years ago

1 Reply

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...

Friday 28th October 2016, 10 am - 2 pm, registration from 9.30 am Eden Court The...

Mazcd

Partner•8 years ago

2 Replies

Spotlight on: MPN Cancer Connection (MPN-CC)

Interview with David Wallace, publisher of the PV Reporter, about starting a new endeavor with his non-profit MPN Cancer Connection (MPN-CC). See the full link...

Interview with David Wallace, publisher of the PV Reporter, about starting a new...

krayburn

•8 years ago

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Parkrun

All, 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 feel a lot better...

All, I just wondered if anyone else does a Parkrun on Saturday morning? I've fo...

MarkD6701

•8 years ago

3 Replies

When is it time for a change?

Hi All, 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 gone from 959 to...

Hi All, I'm 44, JAK negative with ET and currently only on a low dose aspirin r...

Hidden

•8 years ago

21 Replies

Still got nasty toes!? Advice please.

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 toe is swollen,...

I'm now off Hydroxycarbamide (less than a week) and on Anagrelide. My toes are s...

lizzziep

•8 years ago

10 Replies

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 appointment with my...

The doctor just called. I'm Jak2+ . I'm 41 years old. I have a 22 month son and ...

Jennifer1974

•8 years ago

30 Replies

CRP blood test

Hi Maz, 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 other forum members...

Hi Maz, Hope you are well. I have written this as a post rather than asking you ...

Aime

•8 years ago

3 Replies

Bone Marrow Biopsy results question.

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 three years. I got...

Sorry if this is a silly question. When checking the bone marrow for ET what ar...

kentuckyrain

•8 years ago

6 Replies

Hydroxy/seems to make me go into v deep sleep problem last night I was almost sleep walking

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 asleep very quickly...

Hi everyone;: I'm on hydroxy the 500 1 pill a day I take at night. I've been on ...

jeanr

•8 years ago

19 Replies

Weight gains & chest pains???

Hey guys... :) It's been almost 5 calendar months since I first learned of my MPN, and what has become increasingly disturbing is my weight gain over this...

Hey guys... :) It's been almost 5 calendar months since I first learned of my M...

socrates_8

•8 years ago

21 Replies

Bone Marrow Biopsy on Warfarin

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 warfarin; INR target...

Pick your brains, please? I'm PV for at least 6 years; diagnosed after repeated ...

RobinBrum

•8 years ago

3 Replies

problems with Rux : erythropoietin?

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 and now on 10mg...

Hi, have higher risk MF, been on Rux for 3 months. Initially on 15mg x 2 per day...

jane13

•8 years ago

14 Replies

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 messy toes and that the...

I've seen the haematologist today, managed to get an appointment a week early af...

lizzziep

•8 years ago

18 Replies

Any news on Jane65

Does anyone have any news about Jane65? It's been about a month now. Bye for now. Crapaud

Does anyone have any news about Jane65? It's been about a month now. Bye for now...

crapaud

•8 years ago

3 Replies

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 regressed, my...

I've been on higher doses of cortisone the last month or so to get over a chroni...

crapaud

•8 years ago

16 Replies

Osteoporosis drugs and ET

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 both?

Can we take osteoporosis drugs while on HU? Are there some we can't take? I'm fe...

DH65

•8 years ago

3 Replies

Lady question

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

I have PV and wondered if any of you ladies out there know if it is safe to have...

Foss33

•8 years ago

2 Replies

Hair Loss

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 HU ! Its starting...

Hi all , can anyone tell me if hair shedding in us women Is also a symptom of ha...

Hidden

•8 years ago

8 Replies

Have you tried Pomi,T.. It's a cancer supplement

Talking about diet and good supplement ,s . This is one I have tried with good results ..

Talking about diet and good supplement ,s . This is one I have tried with good r...

Twinkly

•8 years ago

17 Replies

Fatigue

In a recent edition of CURE magazine, it was reported that acupressure effectively reduced fatigue in breast cancer patients. The patients were taught how to...

In a recent edition of CURE magazine, it was reported that acupressure effective...

katiewalsh

•8 years ago

10 Replies

Newly diagnosed with ET.

Hi I have recently been diagnosed with ET after many blood tests and a bone marrow biopsy :( though just on aspirin for now with a follow up in 3 months....

Hi I have recently been diagnosed with ET after many blood tests and a bone marr...

Jonnymitts

•8 years ago

25 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for August 2016

Holidaying at altitude

My Great North Run Number has arrived 🚶🏻🏃🏅🎖👟

Unexplained secondary PV

Exciting weekend!

Great North Run for MPN Voice - update

Spaced Out?

MPN Voice Nottingham Support Group Guest speakers confirmed for August, September, October and November meetings, and Cake Sale

New discoveries!

MPN Voice Patients’ Forum – Inverness

Spotlight on: MPN Cancer Connection (MPN-CC)

Parkrun

When is it time for a change?

Still got nasty toes!? Advice please.

Help. Thyroid Cancer Survivor now MPN Survivor?

CRP blood test

Bone Marrow Biopsy results question.

Hydroxy/seems to make me go into v deep sleep problem last night I was almost sleep walking

Weight gains & chest pains???

Bone Marrow Biopsy on Warfarin

problems with Rux : erythropoietin?

First Day on Anagrelide!

Any news on Jane65

Ruxolitinib & GvHD

Osteoporosis drugs and ET

Lady question

Hair Loss

Have you tried Pomi,T.. It's a cancer supplement

Fatigue

Newly diagnosed with ET.

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