Posts - MPN Voice | HealthUnlocked

MPN Voice

10,445 members • 14,398 posts

All posts for September 2019

PV and knee replacements

Hi my MPN family I was away in Whitby last week and though I knew my knees were very bad I didn't realise how bad until I tried to walk around Whitby on their...

Hi my MPN family I was away in Whitby last week and though I knew my knees were ...

jillydabrat

•5 years ago

8 Replies

Llandudno Forum

Hi is anyone going to the Llandudno Forum this Friday. I’ve been to 2, Liverpool and Manchester and find them really helpful. Was booked to go this week with...

Hi is anyone going to the Llandudno Forum this Friday. I’ve been to 2, Liverpool...

Grumpyfairy

•5 years ago

4 Replies

Polycythemia Vera mutations

I have polycythemia vera and doctor found Exxon 12 mutation present. Does anyone else have this? I’d appreciate any info on this issue. Thanks

I have polycythemia vera and doctor found Exxon 12 mutation present. Does anyone...

Lyineyes

•5 years ago

3 Replies

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Cellulitis

My partner was diagnosed with Pv 14 months ago after suffering from cellulitis in his leg. Now 14 months on he has just spent 2 weeks in hospital undergoing 3...

My partner was diagnosed with Pv 14 months ago after suffering from cellulitis i...

Dennykev

•5 years ago

7 Replies

is there any connection between gamma-glutanyl transferase enzyme values and JAK 2? Present value went to 70.

The ggt value can be indicative of many possibilities but mine went up just recently--though all other lab tests are normal. Would appreciate response.

The ggt value can be indicative of many possibilities but mine went up just rece...

milw532

•5 years ago

4 Replies

Hello!

Hi. I'm Claire. I was diagnosed with Essential Thrombocythemia JAK2 in December 2018 after 18 months of feeling blahhh. My GP didnt really know me before this...

Hi. I'm Claire. I was diagnosed with Essential Thrombocythemia JAK2 in December ...

ClaireyCS

•5 years ago

21 Replies

Anyone have problems with their hands being cold and painful??

Hi all, I’m having a problem with my hands, they get very cold and painful in cold stores, cars, etc. with air conditioning on. I was wondering if anyone...

Hi all, I’m having a problem with my hands, they get very cold and painful in c...

Ann16

•5 years ago

6 Replies

Give as you live

Hi can anyone remember a post about “give as you live” I seem to think that someone said that there is an MPN we can use to donate to.. or am I dreaming.......

Hi can anyone remember a post about “give as you live” I seem to think that some...

Skye333

•5 years ago

3 Replies

Now something else to contend with 🤪

Hello my fellow MPNs not been on here for a while, due to the fact had a few health issues. Where to start, first things first my bloods are all normal hurrah...

Hello my fellow MPNs not been on here for a while, due to the fact had a few hea...

Superwoman

•5 years ago

14 Replies

MDS/MPN ?

Hello, all, these last few weeks have been a whirlwind of a new hematologist appointment followed by lab work, a bone marrow biopsy, and an ultrasound. My next...

Hello, all, these last few weeks have been a whirlwind of a new hematologist app...

Cja1956

•5 years ago

14 Replies

Very interesting article re MF treatment options and possible future ‘cures’

Pretty encouraging and worth reading...

Paul123456

•5 years ago

8 Replies

Stomach issues w/Hydrea

Taking 500mg Hydrea daily. Have terrible stomach issues. Pain in my upper abdominal. Anyone had any success with what to take. Ive tried Nexium which gives me...

Taking 500mg Hydrea daily. Have terrible stomach issues. Pain in my upper abdomi...

spikesnana

•5 years ago

12 Replies

Ex nursing and medical staff

Anyone involved in prep and administration of BLEOMYCIN IN EARLY 1970s developed a blood cancer. Friend and colleague of mine, both involved in this, same...

Anyone involved in prep and administration of BLEOMYCIN IN EARLY 1970s developed...

Mysi

•5 years ago

1 Reply

Offered flu jab due to being classed as immunosuppressed with ET... What???

Hi, has anyone else had experience of this? I can't find anything online to suggest that ET makes me immunosuppressed. Yet when I called the doctor's surgery...

Hi, has anyone else had experience of this? I can't find anything online to sugg...

LRH1977

•5 years ago

29 Replies

Questions

At last, I have just a week to go until my appointment with my haematologist, when I will get the results of the bone marrow biopsy which I had four weeks ago....

At last, I have just a week to go until my appointment with my haematologist, wh...

Blaablaablaa

•5 years ago

11 Replies

Neuro-Behçet’s or Fibro symptoms

It’s looking like I’ll get a diagnosis of Behçet’s but on research I’ve come across Neuro-Behçet and wondering if some of my current symptoms could be linked....

It’s looking like I’ll get a diagnosis of Behçet’s but on research I’ve come acr...

Emeraldpv

•5 years ago

1 Reply

ET and Joint Pain

Hi, I am ET JAK2, having been diagnosed earlier this year. I'm on 1000/500 Hydroxycarbamide alternate days. I'm managing pretty well and keeping active by...

Hi, I am ET JAK2, having been diagnosed earlier this year. I'm on 1000/500 Hydro...

Trueblue8

•5 years ago

10 Replies

Scientists prove low cost arthritis drug can effectively treat blood cancer sufferers

Post by MPN-MATE Admin » Wed Sep 18, 2019 12:19 am Sept. 16, 2019 by University of Sheffield......

Post by MPN-MATE Admin » Wed Sep 18, 2019 12:19 am Sept. 16, 2019 by University...

socrates_8

•5 years ago

4 Replies

Just bad luck? Australian cancer patients nominate 'fate' as third most likely cause

Post by MPN-MATE Admin » Tue Sep 17, 2019 11:17 pm Sept. 16, 2019 https://www.mpn-mate.com/forum/viewtopic.php?f=3&t=86 Just bad luck? Australian cancer...

Post by MPN-MATE Admin » Tue Sep 17, 2019 11:17 pm Sept. 16, 2019 https://www.m...

socrates_8

•5 years ago

5 Replies

Flu vaccine while taking 20mg Jakafi

Has anyone here gotten the flu vaccine this year while on 20mg Jakafi

rkhabtec

•5 years ago

6 Replies

Mds/mpd overlap

Hi I have recently commenced hydrea to reduce platelets but I’m worried about potential fall in Hb. Has anyone had experience of this Nurset

Hi I have recently commenced hydrea to reduce platelets but I’m worried about p...

Nurset

•5 years ago

6 Replies

Mds/mpd overlap

Has anyone been treated with hydrea for overlap? Will it drop my Hb?

Nurset

•5 years ago

1 Reply

Blood pressure

Hi there Wondering if anyone has issues with high blood pressure with ET? I'm trying to figure out what might be happening with the bloods on hydroxycarbamide....

Hi there Wondering if anyone has issues with high blood pressure with ET? I'm tr...

carlyjo

•5 years ago

9 Replies

Weight gain on Ruxolitinib

I’ve been taking ruxolitinib (40 mg each day) for 7 months since PV progressed to MF. I have more UTIs and weight gain. I wonder if other people experience...

I’ve been taking ruxolitinib (40 mg each day) for 7 months since PV progressed t...

Patchworklife

•5 years ago

19 Replies

Any news,trials or progress on use of CAR T-cell therapy for Myelofibrosis or related conditions?

A true breakthrough in several diseases , especially cancers eg Leukemia. Costly ( $1m per treatment) but costs will decline . This is the use of your own...

A true breakthrough in several diseases , especially cancers eg Leukemia. Costly...

Innessant

•5 years ago

1 Reply

Diagnosed by chance

I was diagnosed following a blood test before I had an epidural for back pain. I had been having blood tests every six months for a thyroid problem and all the...

I was diagnosed following a blood test before I had an epidural for back pain. I...

Wesleygrange2a

•5 years ago

6 Replies

Aching joints

Hi probably unrelated to my polycythemia but does anyone else have painful joints since diagnosis? My wrists and fingers hurt - especially when I’m doing...

Hi probably unrelated to my polycythemia but does anyone else have painful joint...

Louise2870

•5 years ago

11 Replies

Can kiwi fruit increase platelets??

I read that kiwi fruit can increase platelets???? Does anyone know if they do? I love kiwi fruit and they seem to have a lot of health benefits however with...

I read that kiwi fruit can increase platelets???? Does anyone know if they do? ...

Camelian

•5 years ago

16 Replies

Cholesterol

My cholesterol is rising, we think it is linked to pegasys and PV. My GP says it’s not my diet. Any thoughts or advice if statins are a good option in general...

My cholesterol is rising, we think it is linked to pegasys and PV. My GP says it...

EleanorPV

•5 years ago

11 Replies

Blue badge

Anybody on here managed to get blue disability badge for car? ET PV ?

Spirit123

•5 years ago

12 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for September 2019

PV and knee replacements

Llandudno Forum

Polycythemia Vera mutations

Cellulitis

is there any connection between gamma-glutanyl transferase enzyme values and JAK 2? Present value went to 70.

Hello!

Anyone have problems with their hands being cold and painful??

Give as you live

Now something else to contend with 🤪

MDS/MPN ?

Very interesting article re MF treatment options and possible future ‘cures’

Stomach issues w/Hydrea

Ex nursing and medical staff

Offered flu jab due to being classed as immunosuppressed with ET... What???

Questions

Neuro-Behçet’s or Fibro symptoms

ET and Joint Pain

Scientists prove low cost arthritis drug can effectively treat blood cancer sufferers

Just bad luck? Australian cancer patients nominate 'fate' as third most likely cause

Flu vaccine while taking 20mg Jakafi

Mds/mpd overlap

Mds/mpd overlap

Blood pressure

Weight gain on Ruxolitinib

Any news,trials or progress on use of CAR T-cell therapy for Myelofibrosis or related conditions?

Diagnosed by chance

Aching joints

Can kiwi fruit increase platelets??

Cholesterol

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