Where from

[cannonfire]

I'm just wondering where y'all are from. I'm from Texas close to Fort Worth.

[Hidden]

I am from Lincolnshire UK

[Hidden]

I am from London, UK

[Karen1970]

I am from Essex

[Badger1]

I am from Northumberland

[JediReject]

Hi cannonfire , as I understand it most on here are UK based but we have friends from Australia, Canada , The US , France to my knowledge. The more the merrier. Our conditions bind us sometimes the way we are treated or our health systems differ as do the distances some of you guys travel to your appts. Cheers Chris

[Twinkly]

I think I'm from Venus ......but more recently staying near Cambridge ,UK...best cancer team ,I'm very happy to say !!! Twinkly. X

[beetle]

I'm in Scotland - but due to move South across the border soon. Maybe Devon?

[piggie50]

I'm in glorious Devon. UK.

[Stevesmum42 in reply to piggie50]

I'm in Devon too .

[beetle in reply to piggie50]

do you go to Derriford or Exeter?

[piggie50 in reply to beetle]

Hi beetle, I go to Exeter. Dr Hamilton. Whereabouts are you?

[beetle in reply to piggie50]

I'm in Scotland but moving to Devon hopefully in next 6 months. I used to live in Cornwall and went to derriford so looking for some feedback on Exeter. Is dr Hamilton an MPN specialist?

[piggie50 in reply to beetle]

He is excellent and knows his stuff. I really trust him. I don't see him every time I go but I can request to see him when I arrive for my appointment. There is also a Dr Coppell but I have never seen him.

Judy

[beetle in reply to piggie50]

Thanks for that. Not sure yet where we will be moving to so I will bear your comments in mind.

[Stevesmum42 in reply to beetle]

I go to Torbay

[beetle in reply to Stevesmum42]

Is there a haematologist there or does someone come from Exeter/Plymouth?

[Stevesmum42 in reply to beetle]

Yes there is a Heamatologist in Torbay..

[Superwoman]

Morning I am from the garden of England Kent

[Helen1952]

Haha twinkly you do make me laugh .

I as usual am a mixture I'm originally from Dublin Ireland now live in Cambridgeshire UK and in 6 weeks time will be moving to West Sussex UK and there I will stay hurrah

Helen x

[Twinkly]

I'd like to know more about you and your ill ness .what treatment do the doctors suggest for you .is it the same as ours ..what treatment is recommended to make your life comfortable ,do you follow any diet plan ? I only ask because I do myself ,( also because I'm extremely nosey ) ,,,keep twinkling ,,x

[cannonfire in reply to Twinkly]

So far I am only taking an aspirin a day. My platelets run between 450 and 500. I have no symptoms as of now. I see my hematologist every 6 months with labwork every 3 months.

I am curious about y'alls health care system. I do have medical insurance through my work.

I work for a hospital. I do catscan and xray. I have for almost 30 years. I'm sure that is how I became jakd up positive.

[sksar in reply to cannonfire]

Hi cannonfire, I was interested to read your post as I read something recently which suggested xrays may have something to do with our condition and it made me think about the number of dental xrays I had on the run up to my diagnosis - a lot. I have ET but am JAC negative.

[cannonfire in reply to Twinkly]

What do you recommend I eat for et?

[Hidden]

I'm currently living in Nottinghamshire UK

[Nickthedevil]

I am from Stourbridge in the Midlands x

[Paul42]

Derby

[mol56]

Hi. I live in Essex.

[Inca]

I live in France and U K.

[babbittybumble]

West Glamorgan

[sksar]

Hi I`m from Yorkshire

[jazzyb]

Sheffield

[lizzziep in reply to jazzyb]

I'm not far from you - Rotherham, South Yorkshire

[jazzyb in reply to lizzziep]

Not far at all from each other. Hope you are as well as can be x

[lizzziep in reply to jazzyb]

Not so bad, hope you are too. Do you go to the Hallamshire Hospital? I go to Rotherham District General.

[jazzyb in reply to lizzziep]

Yes I've been going to the Hallamshire for 8 years now. I go every 3 months & see a registrar. Waiting time not so good, minimum 2 hours sat on a corridor. They don't have a waiting room. How are things at Rotherham? X

[lizzziep in reply to jazzyb]

Pretty good at Rotherham. One of the few things Rotherham Hospital has a good reputation for is the Haematology Department! The main doctor - Peter Taylor - is quite well known, he does a treatment for leukeamia (I think) that is exclusive to this hospital. I have my blood taken about 45 minutes before seeing either the specialist nurse or consultant, occasionally the lab are slow with the blood results, but the waiting room is comfortable. Rarely do I have a long wait (most has been one and a half hours), after seeing the nurse or whoever, I collect my prescription from the hospital pharmacy, that can take half an hour as they have to get the HU from the Oncology department. However parking is a nightmare! Unless you have an early appointment you haven't got a prayer of getting a parking place and it is very expensive too. Cost me £5 last time. It is 2 buses away from where I live or I would go on the bus, I sometimes get my husband to drop me off and come back for me later. Of course now I've said that I'll be there hours when I go next week. X

[jazzyb in reply to lizzziep]

I hope your bloods are ok when you go next week. Luckily I don't live far from the Hallamshire & get dropped off as parking is bad there too. Collecting meds is ok as there is a Boots chemist in the hospital which is quicker. Sounds like you are in good hands with Peter Taylor xxx

[Janet123]

Wisconsin

[chrissie1959]

Hi I live in lincolnshire uk

[Nefeli]

Good morning!!! I am from Greece but Im staying in Cyprus.

[jodary]

I live in Nottinghamshire .

[eire]

I'm from the west of Ireland and treated in Dublin.

[notalone]

Palmetto, Georgia USA

[awlancaster]

Hello,

I'm in Lancaster.

[jeanr]

I'm from the prairie province of Manitoba -right in the middle of Canada.

[wormwood]

Hi, I'm from Leeds in West Yorkshire....

[bordeauxgirl]

Hi Everyone , can a Guernsey girl join in . PS I use the term 'girl' very lightly.lol

[buddin11]

Hi cannonfire. I lived in the HEB area most of my adult life, then moved to Tennessee a little over 25 years ago. I was diagnosed with ET, Jak neg in 2011, then this year with myelofibrosis. I started on hydroxyurea, now on Jakafi 5mg twice daily. My platelet count usually stays around 600. Biggest problem I have is disabling fatigue, but fortunately not every day. Though this is my first post here, I read the comments regularly and have gotten a lot of comfort and strength from others going through similar situations. Glad to see someone else from the USA on here. Best of luck to you...gail

[blulou in reply to buddin11]

My doc, who was in on a bunch of the research, claims that the consensus is that 10mg a day is not a therapeutic dose. He is moving me from 20mg per day to 15.

[buddin11 in reply to blulou]

Hi blulou. Glad to hear your doc was in on the research. My doc agrees that higher doses are more therapeutic. He started me on 20mg twice a day, but my anemia got so severe, I had to have a transfusion. I see him again tomorrow and if my counts allow it, he intends to increase the dose. I'm a bit nervous about it after my last experience but of course I do want all the benefits of the med too, so we'll see what happens. Is a reduced red count why your doc is reducing your dosage? Please keep me informed. This is all so confusing! Thanks for your response…gail

[cannonfire in reply to buddin11]

Nice to hear from you. Hope your days are blessed.

Cathy

[linds]

Surrey, Walton on Thames x

[light]

Hello, I live in London UK, ET JAK2 +. I was diagnosed 2011 and I am on Peg Inteferon Alpha 2 since June 2014. Now I take it every three weeks 135mcg. Last blood test platelets 365. Wishing you well

[Hidden]

Hi im in kent uk

[Phelpsy]

Hi I'm from Newcastle a Geordie Lass 😜

Diagnosed with ET jak2 pos after a Tia 2 years ago, ,

[blulou]

Seattle now...born in Lamesa...a story in itsownself

[cannonfire in reply to blulou]

Lamesa Texas?

[blulou in reply to cannonfire]

All the other ones I've ever seen have a big M. Downwind from White Sands/Alamgordo and about 8 1/2 - 9 months after they blew off the first one. That's our West Texas, son.

[buddin11 in reply to blulou]

Lamesa, TX? I was born in Lubbock! What a small world!

[blulou in reply to buddin11]

I was born one year to the day after they finished the last building at the White Sands testing range. I don't know when you were born, but I wonder about the 'downwinder syndrome'. How many on the other side of the pond understand the significance of that date and that area?

[buddin11 in reply to blulou]

I was born in 1952. Of the cousins I have been able to catch back up with thanks to Facebook, almost all of them have either had colon cancer (at a relatively young age), or some type of an autoimmune system disorder. So you may well be on to something. We moved from that area when I was in junior high school, and I never even thought about the possibility of a connection until you mentioned it. Very intriguing!

[blulou in reply to buddin11]

There's a very interesting novel based on real events named DOWNWINDERS. It's about the folks in southern Utah and their problems with all sorts of cancer. It also refers to John Wayne and a whole group of the actors who did westerns out in that part of the country. That particular pollution can hide in the sand and the dust for years.

[buddin11 in reply to blulou]

Thanks so much for this information. I will see if I can find the book. That branch of my family (McCleskey) is holding a large reunion next summer. Don't know if I'll be up to the travel, but will certainly see what I can find out from the ones who attend. Hope you are doing well.

[blulou in reply to buddin11]

Why would anyone hold anything other that an ice cream social in Lubbock in the summer? (semi kidding) See if the names Blasingame, Brooks, Spiva, or York pop up. Hope you're still hanging in there, too.

[cannonfire in reply to buddin11]

I was born in Lubbock also. Grew up in MIdland

[blulou in reply to cannonfire]

My Dad was born in Midland.

[sand-bog]

Hi from New South Wales, Australia

[Ednama]

We are in Altrincham, nr. Manchester. It's my husband who had MF/MDS who had a stem cell transplant in 2014. After a very rocky road just starting to get some quality of

life back.

[Realtorlin]

I am from Delaware in the USA

[Stevesmum42]

This really is a very wide spread family. We all have our conditions in common. How lovely so many people have responded . Best wishes to you all.

Sandy x

[zvinkovic]

Hello from Zupanja, Croatia.

Zlata, ET JAK2 neg, diagnosed 09/1999

[Hidden]

Clayton-le-Woods, Nr Preston, Lancashire 😄

[Nirbhebe]

I hail from Saint Paul Minnesota!

[hackett]

W ow that's quite a range. Like Sandbog also an Aussie, nominally Canberra but currently Brisbane, Canberra winters are too cold. All the best to all... Jan

[steve_m]

I'm from Leeds. As my counts are considered stable my bloods get taken at my GP and the Heamo nurse calls to discuss a week later. It works for me

[Realtorlin]

I am from Delaware.

[YogaLover]

Hi from Preston in Lancashire UK

[Realtorlin]

I am from Newark, Delaware in the USA