Posts - MPN Voice | HealthUnlocked

MPN Voice

10,992 members•15,371 posts

All posts for November 2015

Live MPN Interviews and Updates from ASH

As you know, I am a newsman at heart - a journalist since 1967 as a student. Since 1984 I have devoted myself to bringing news to patients with serious...

As you know, I am a newsman at heart - a journalist since 1967 as a student. Sin...

andrewschorr

•9 years ago

2 Replies

Medoprazole

Hi I am taking HU and asprin daily but dr also gave me Medoprazole to protect my stomache! Anyone else taking this? To me it is another med and I don't want to...

Hi I am taking HU and asprin daily but dr also gave me Medoprazole to protect my...

Klys

•9 years ago

5 Replies

Intron A and Pegasys

Hi, is there anyone who took Intron A and stopped it cause crisis of anxiety/depression and then passed to Pegasys without having this adverse effect?

Hi, is there anyone who took Intron A and stopped it cause crisis of anxiety/dep...

donatella

•9 years ago

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Update on Pegasys for ET

After just 6 weeks on Pegasys my platelets are down from 1150 to 450, which my haem and I are both pretty pleased with - lowest they have been in over 12...

After just 6 weeks on Pegasys my platelets are down from 1150 to 450, which my h...

AndyT

•9 years ago

14 Replies

PV Insurance Claim

I know critical illness insurance claims have been discussed in the past and have thought about it before, but never actually got round to it. I've just had a...

I know critical illness insurance claims have been discussed in the past and hav...

mark382

•9 years ago

4 Replies

Iodine allergic reaction?

All, On Tuesday I had a CT scan just to check everything is ok. As part of the scan I had Iodine injected but since last night my skin has started to go a bit...

All, On Tuesday I had a CT scan just to check everything is ok. As part of the ...

MarkD6701

•9 years ago

7 Replies

Numbness / tingling

Has anyone exerienced numbness / tingling in fingers from ET or from its treatment (HU)?

Has anyone exerienced numbness / tingling in fingers from ET or from its treatme...

Karol_Rua

•9 years ago

11 Replies

Perm or Color on HU

I've been on HU for about 4 years now and have colored my hair the entire time. It hasn't done any damage to my hair. I have very thick hair, and it has...

I've been on HU for about 4 years now and have colored my hair the entire time. ...

Pollywog

•9 years ago

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Happy Thanksgiving

Hope everyone has a wonderful Thanksgiving Holiday. I couldn't be more blessed then to have found all these wonderful people! Mickey

Hope everyone has a wonderful Thanksgiving Holiday. I couldn't be more blessed ...

mickey64

•9 years ago

5 Replies

Perm or Color while on HU

Has anyone colored or permed there hair while on HU. My hair has always been super thin so I get a body perm every couple of months. Has anyone permed or...

Has anyone colored or permed there hair while on HU. My hair has always been su...

mickey64

•9 years ago

18 Replies

Put this date in your diary 9 th December !!

We are organising a coffee morning get together at Cambridge .. It's at Scotsdales garden centre ,it's a lovely venue ,,set in the gardens . Specially built on...

We are organising a coffee morning get together at Cambridge .. It's at Scotsdal...

Twinkly

•9 years ago

4 Replies

HU, ET and Advil

Hi all, I have a question, I see where a lot of people say not to take any nsaids (advil etc) with your HU and aspirin however my Dr (Hemo Dr) says no there is...

Hi all, I have a question, I see where a lot of people say not to take any nsaid...

mickey64

•9 years ago

6 Replies

Health Unlocked - access to!

I suppose this is a bit more of an IT thing really but has anyone had problems with the HU app? I can't access the site via this app so have ditched it but...

I suppose this is a bit more of an IT thing really but has anyone had problems w...

Polly-PV

•9 years ago

3 Replies

A question for the women...

My periods have been haywire for years. I'm 45 now, and from 2001-2012 they stopped completely. I lost a huge amount of weight because I was ill and they told...

My periods have been haywire for years. I'm 45 now, and from 2001-2012 they stop...

lynnieb

•9 years ago

4 Replies

Interesting research into new treatment for MPNs

Sounds like this could be promising - hope they get a trial organised soon!...

AndyT

•9 years ago

14 Replies

Hydroxicarbamide

I recently stop take hydroxcarbimide due to have a operation, I have just started taking it again and have this pain on the left side just below the rip cage,...

I recently stop take hydroxcarbimide due to have a operation, I have just starte...

sjdard

•9 years ago

4 Replies

Thanks

You've all been so wonderful to take the time to share your ideas and suggestions about my bone pain. Once again I feel incredibly fortunate to have such...

You've all been so wonderful to take the time to share your ideas and suggestion...

katiewalsh

•9 years ago

2 Replies

Still no wiser

I've been to the hospital this morning for a scan on my spleen, which came out normal!. I've been striving to be normal for years but usually fail!! So I'm no...

I've been to the hospital this morning for a scan on my spleen, which came out n...

lizzziep

•9 years ago

13 Replies

How often should bloods be done?

I don't go back to my haematologist until Feb 2016, but should I get them checked in the meantime? Being newly diagnosed, I just don't know. Thanks

I don't go back to my haematologist until Feb 2016, but should I get them checke...

lynnieb

•9 years ago

10 Replies

Scintillating Scotoma anyone??

I've been complaining to my optician for about 4 years that I keep getting disturbance in my vision. It is like a silvery shimmer in one part of my sight, It...

I've been complaining to my optician for about 4 years that I keep getting distu...

lynnieb

•9 years ago

15 Replies

Newly diagnosed with ET

I was diagnosed with ET, JAX2 negative but CALR exon 9 sequencing positive. My platelet count was 813. I was commenced on 100mg aspirin. My GP picked up the...

I was diagnosed with ET, JAX2 negative but CALR exon 9 sequencing positive. My p...

Hidden

•9 years ago

17 Replies

Bone Pain?

Hi, over the past few weeks I've had three occasions of pain different than I've ever experienced. Two times it occurred after I put pressure on an area (base...

Hi, over the past few weeks I've had three occasions of pain different than I'v...

katiewalsh

•9 years ago

28 Replies

MPN Voice Christmas cards SOLD OUT

We have now sold out of all the Christmas cards and unfortunately we are unable to obtain any further supplies from the printers. We would like to thank all...

We have now sold out of all the Christmas cards and unfortunately we are unable ...

Mazcd

Partner•9 years ago

7 Replies

Saying it how it is...assertiveness & honesty with symptoms

As a result of feeling encouraged at the recent Living with MPNs day in London, to keep a 'symptoms diary', I decided to ring my haematologist on Monday...

As a result of feeling encouraged at the recent Living with MPNs day in London, ...

Polly-PV

•9 years ago

5 Replies

Coffee morning at Cambridge now booked on dec 9 th ,,

Wednesday morning ..all welcome ,,it's free .carers .friends .family. Come and relax ,beautiful Christmas surroundings .. Scotsdales garden centre...

Wednesday morning ..all welcome ,,it's free .carers .friends .family. Come and ...

Twinkly

•9 years ago

7 Replies

To Be Or Not To Be - Mixed Chimerism Issue . .

Hi Friends, just back from Manc Royal and thought I'd post an update. . Had a further Chimerism test assessed over last week or so using blood taken from me...

Hi Friends, just back from Manc Royal and thought I'd post an update. . Had a fu...

JediReject

•9 years ago

68 Replies

MPN Voice Nottingham Support Group – November meeting

The next and last meeting for this year will take place on Wednesday 18th November, in The Maggie’s Centre, Gate 3, Nottingham City Hospital, Hucknall Road,...

The next and last meeting for this year will take place on Wednesday 18th Novemb...

Mazcd

Partner•9 years ago

1 Reply

ET young adult

Hi everybody, I'm Davide, 31 years old, from Italy. I'm a writer, diagnosed with ET in 2014, jak negative and no therapy at the moment. It's very hard to...

Hi everybody, I'm Davide, 31 years old, from Italy. I'm a writer, diagnosed with...

Davide1984

•9 years ago

20 Replies

MCV level

Hello All, My GP has recently noticed that my MCV (Mean Corpuscular Volume) has been increasing. It's at 114.1 and the level should be 82-98. I have a letter...

Hello All, My GP has recently noticed that my MCV (Mean Corpuscular Volume) has...

stevenjust

•9 years ago

2 Replies

Got my bmb results. Sort of good news...

I have a definite diagnosis now of ET. My bmb showed no damage, thank goodness. My platelets are extremely high though. As I'm 45, my consultant is reluctant...

I have a definite diagnosis now of ET. My bmb showed no damage, thank goodness. ...

lynnieb

•9 years ago

4 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for November 2015

Live MPN Interviews and Updates from ASH

Medoprazole

Intron A and Pegasys

Update on Pegasys for ET

PV Insurance Claim

Iodine allergic reaction?

Numbness / tingling

Perm or Color on HU

Happy Thanksgiving

Perm or Color while on HU

Put this date in your diary 9 th December !!

HU, ET and Advil

Health Unlocked - access to!

A question for the women...

Interesting research into new treatment for MPNs

Hydroxicarbamide

Thanks

Still no wiser

How often should bloods be done?

Scintillating Scotoma anyone??

Newly diagnosed with ET

Bone Pain?

MPN Voice Christmas cards SOLD OUT

Saying it how it is...assertiveness & honesty with symptoms

Coffee morning at Cambridge now booked on dec 9 th ,,

To Be Or Not To Be - Mixed Chimerism Issue . .

MPN Voice Nottingham Support Group – November meeting

ET young adult

MCV level

Got my bmb results. Sort of good news...

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