Posts - MPN Voice | HealthUnlocked

MPN Voice

10,647 members • 14,731 posts

All posts for February 2019

Tens machine

Hi anyone use a tens machine for back pain. Bought one after being recommended to use one by my gp and on the instructions says don’t use if have cancer!...

Hi anyone use a tens machine for back pain. Bought one after being recommended t...

Grumpyfairy

•5 years ago

10 Replies

Pegasys Interferon

Hi Just a wee update - still got MF, still coping 'not too bad' - in fact I'm doing better than that as a result of changing medication to Pegasys from...

Hi Just a wee update - still got MF, still coping 'not too bad' - in fact I'm do...

Not2bad

•5 years ago

4 Replies

Platelets low & starting Hydroxycarbamide

Morning everyone I was diagnosed with PV Jak 2 + back in 2015 and have treated with Aspirin and venesection since then. For the past 2 years I've needed...

Morning everyone I was diagnosed with PV Jak 2 + back in 2015 and have treated w...

Kari1961

•5 years ago

5 Replies

Want to take advantage of all our features? Just log in!

Not keen on aspirin? Here's what Nutritional Therapist with a PhD in oncology is offering me...

Hi all I have a history of gastritis, so I'm not keen on what pubmed and other places say about lifetime aspirin. Here's what my Nutritional Therapist (with...

Hi all I have a history of gastritis, so I'm not keen on what pubmed and other ...

ilovetoastwithbutter

•5 years ago

2 Replies

Bone Marrow Aspiration - I'm scared.

I'm having 2 bone marrow aspirations in 1 week for stem cell injections. Has anyone had an aspiration with no meds but just localized numbing of the area? My...

I'm having 2 bone marrow aspirations in 1 week for stem cell injections. Has any...

iceskating1

•5 years ago

29 Replies

Sweet potato or not to sweet potato. Is the question?

Is it true sweet potato increases platelets? Just after eating a big sweet potato I read a post saying they do?? Wow no more sweet potato.

Is it true sweet potato increases platelets? Just after eating a big sweet potat...

Camelian

•5 years ago

20 Replies

Would any one being treated for an MPN at the Churchill Hospital, Oxford like get in touch?

Hi I have myelofibrosis, diagnosed in 2016 and I'm now being treated at the Churchill Hospital , Oxford. If anyone else with an MPN is being seen there too,...

Hi I have myelofibrosis, diagnosed in 2016 and I'm now being treated at the Chu...

Rachelthepotter

•5 years ago

28 Replies

Started Hydroxy - 6 month report

Well after initially refusing Hydroxycarbamide when I turned 60, my haemo showed me a graph of risk of stroke - so I decided to take it! I'm pleased to report...

Well after initially refusing Hydroxycarbamide when I turned 60, my haemo showed...

rdevans

•5 years ago

29 Replies

MPN Voice Nottingham Support Group - 20 FEB MEETING CANCELLED.

The meeting on Wednesday 20 February has been cancelled. The meeting on Wednesday 20 March will be the next meeting.

The meeting on Wednesday 20 February has been cancelled. The meeting on Wednes...

Mazcd

Partner•5 years ago

Be the first to reply

Waiting for BMB results (gulp)

Hi all, I've been waiting for a month after my first BMB. Took weeks to heal btw. Because I am back home in Australia, Prof Claire's team are going to email...

Hi all, I've been waiting for a month after my first BMB. Took weeks to heal btw...

ilovetoastwithbutter

•5 years ago

8 Replies

New friend

My name is Helena I was diagnosed with Jack-2 et in October 2018.

Helena303

•5 years ago

13 Replies

Bmb report wording

Even though my last bmb was poor quality it was re-reviewed by an expert. I’ve pulled up the report from the portal and haven’t yet discussed with the expert....

Even though my last bmb was poor quality it was re-reviewed by an expert. I’ve ...

robbjoy

•5 years ago

1 Reply

Essential Thrombocythaemia

Hi my husband has just been told he has ET.When is put on the Chemo tablet and blood thiners is it likely he can return to being a bricklayer. many thanks

Hi my husband has just been told he has ET.When is put on the Chemo tablet and b...

cassie1010

•5 years ago

14 Replies

Hydroxy

I was on it 10 days but my dr has took me off it due to a reaction my hematology dr phoning me Monday they this drugis quite common not many side effects but I...

I was on it 10 days but my dr has took me off it due to a reaction my hematology...

Hahag

•5 years ago

2 Replies

Still Undiagnosed !!!

Hi Everyone, Today i had an appointment with my hem and he still says that we have to wait another 3 to 4 months for definative diagnosis. As i had gone with...

Hi Everyone, Today i had an appointment with my hem and he still says that we ha...

Vigiindia

•5 years ago

6 Replies

My MPN Journey

THE MPN MERRY-G0-ROUND At the start they blamed low mood, I’d been anxious, sad and rude Parents ill and maybe dying, Changing job, in bits crying....

THE MPN MERRY-G0-ROUND At the start they blamed low mood, I’d been anxious, ...

Aime

•5 years ago

36 Replies

Blood sisters

Lovely catch up with my Tyneside Blood Sisters! Pam, Pat and Katy. Thank you so much it was fabulous!!!

Lovely catch up with my Tyneside Blood Sisters! Pam, Pat and Katy. Thank you so...

Sand-Dancer

•5 years ago

7 Replies

ET new

I got diagnosed with ET on Monday....was shocked, sad, depressed, now it's Friday and I'm angry. Channelling this anger into getting tasks done. Signing up...

I got diagnosed with ET on Monday....was shocked, sad, depressed, now it's Frida...

anewpath

•5 years ago

21 Replies

Idiopathic erythrocytosis

Hi Guys, apologies I couldn’t find the post regarding the differences in the terms idiopathic erythrocytosis, Polycythaemia and PV. Maz has received an answer...

Hi Guys, apologies I couldn’t find the post regarding the differences in the ter...

Aime

•5 years ago

6 Replies

Tamarin study update and a new study now recruiting

Tamarin Study Effects of Tamoxifen on the Mutant Allele Burden and Disease Course in Patients with Myeloproliferative Neoplasms – ET/PV and MF The...

Tamarin Study Effects of Tamoxifen on the Mutant Allele Burden and Disease Cours...

Mazcd

Partner•5 years ago

Be the first to reply

BMB question - I’m new, so bear with me!

Hello - I was just diagnosed about 3 weeks ago. I have been having palpitations/irregular heartbeat and had a work up. Given my family history, I had a...

Hello - I was just diagnosed about 3 weeks ago. I have been having palpitations...

Teammom4

•5 years ago

7 Replies

Curcumin and JAK2

Interesting article but dated mid 2018 so our Hems should be aware of it if major breakthrough. My concern would be whether it interferes with our......

Interesting article but dated mid 2018 so our Hems should be aware of it if majo...

Paul123456

•5 years ago

6 Replies

Jury Duty

Has anyone with ET been given exemption from Jury Duty? Although I class myself as fairly fit, there are so many reasons I don't feel able enough to do this....

Has anyone with ET been given exemption from Jury Duty? Although I class myself ...

Mica11

•5 years ago

11 Replies

sensitive skin

I started on hydroxy a week ago but I'm started to feel like my skin is all electrical is this normal I get little zaps every We're but even putting clothes on...

I started on hydroxy a week ago but I'm started to feel like my skin is all elec...

Hahag

•5 years ago

4 Replies

Waiting for results

Hi I have been having off the charts blood work..white bloodcells always high. Platelet count high. Iron low. Body pain,nausea, fatigue...Now I'm waiting for...

Hi I have been having off the charts blood work..white bloodcells always high. P...

BrandyC84

•5 years ago

5 Replies

I love this 💗

Good morning all! Just had to share this x

Sand-Dancer

•5 years ago

16 Replies

Holiday insurance

I've been phoning round today For holiday insurance we are currently with staysure. My husband has post PV MF I've. Explained this to them they want to know...

I've been phoning round today For holiday insurance we are currently with staysu...

tracey13

•5 years ago

10 Replies

Are prescriptions FREE is you have been diagnosed with PV?

Hi, Does anyone claim FREE prescriptions since they have been diagnosed with PV in the UK? My husband takes a medley of tablets, however not entirely sure the...

Hi, Does anyone claim FREE prescriptions since they have been diagnosed with PV ...

TheFog

•5 years ago

17 Replies

Diagnosed with ET

Hi , Feeling very nervous about writing this as never done anything like this before . I am 45 and was diagnosed with ET last June struggling to comes to...

Hi , Feeling very nervous about writing this as never done anything like this ...

Maxid

•5 years ago

17 Replies

Survey for the MOSAICC Study - we need your help

MOSAICC (MyelOproliferative neoplasmS: An In-depth Case-Control) Study – piecing together the causes of...

MOSAICC (MyelOproliferative neoplasmS: An In-depth Case-Control) Study – piecing...

Mazcd

Partner•5 years ago

8 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for February 2019

Tens machine

Pegasys Interferon

Platelets low & starting Hydroxycarbamide

Not keen on aspirin? Here's what Nutritional Therapist with a PhD in oncology is offering me...

Bone Marrow Aspiration - I'm scared.

Sweet potato or not to sweet potato. Is the question?

Would any one being treated for an MPN at the Churchill Hospital, Oxford like get in touch?

Started Hydroxy - 6 month report

MPN Voice Nottingham Support Group - 20 FEB MEETING CANCELLED.

Waiting for BMB results (gulp)

New friend

Bmb report wording

Essential Thrombocythaemia

Hydroxy

Still Undiagnosed !!!

My MPN Journey

Blood sisters

ET new

Idiopathic erythrocytosis

Tamarin study update and a new study now recruiting

BMB question - I’m new, so bear with me!

Curcumin and JAK2

Jury Duty

sensitive skin

Waiting for results

I love this 💗

Holiday insurance

Are prescriptions FREE is you have been diagnosed with PV?

Diagnosed with ET

Survey for the MOSAICC Study - we need your help

Search posts

Pinned Posts

Latest poll

What age were you when your MPN was diagnosed?

Topics

Archive