Hi all
Have just been diagnosed with ET & PV with Jak2 mutation so researching as much as possible. Had a bmb last week and ultra sounds so go back to Consultant in a couple of weeks for results. Taking Aspirin but may be put on something else dependent on results.
Hi welcome to the forum.
Sorry to hear about your diagnosis, but lots of us on here, so fire off any questions you have we are a friendly bunch.
Lots of information on here, people on all sorts of meds will be able to offer advice.
Its a confusing time just after diagnosis so dont be afraid to shout up.
Paul
Hi Jane, just welcoming you to the forum.
I was diagnosed with ET (jak2+) earlier this year. I am on aspirin and Hydroxycarbamide which has successfully brought my platelets down to an acceptable level. I have found this forum to be very professional and emotionally supportive.
May I ask if you have symptoms - or did you find out your diagnosis through a random blood test? It was the latter for me.
Mary
Hi Mary
I initially went to my GP as I was having significantly increased migraines. Did my FBC twice at the surgery then referred me on to Haematology at the Bristol Royal Infirmary. Did more tests and they came back with the JAK2+ as well as the high platelets and rbc's. Had a bone marrow biopsy last week (dont really want to repeat that one again as I was so stressed out about it). Ultrasound yesterday and go back to the Consultant on 14/9 for full results. I am expecting them to put me on Hydroxycarbamide as this is what they have already told me.
All came as a bit of a shock, just thought I was going through the menopause with the hot sweats, bone aches, fatigue and headaches!
Hello Jane, welcome to our forum, it is a shock when you are given your diagnosis, there are many people on this forum who will say the same, and also not surprising that you have not heard about it, not many people do know about MPNs but you will be surprised at how many people around the world have them, so you are not alone. As Paul said, just ask any questions you have, we are happy to answer them for you. I would also advise you to read as much as you can on our website mpnvoice.org.uk, and if you would like any information booklets on ET & PV and Hydroxycarbamide then please email me with your postal address maz.cd@mpnvoice.org.uk. Best wishes, Maz
Welcome to the forum Jane. I was diagnosed with PV (Jak 2+) nearly two years ago and initially was a bit baffled by it as you are. This forum and the MPN Voice website were a great help as was having an excellent Haematologist and specialist nursing staff.
I definitely echo what everyone else has said with regards to asking questions via the forum no matter how trivial you think they may be. You'll get a lot of help and support here.
Hi Jane,
Welcome! We are indeed a friendly bunch. I'm Louise, am 62 and live in the Lakes. I was diagnosed with PV 7 years ago and take hydroxicarbamide and aspirin.
As Maz says, have a look at the super duper website, and also if you can, attend one of the MPN forums around the country...there's also a brilliant patient day held every couple of years, usually in November. Hopefully there'll be another in 2017 ( hint hint Maz!) where you'll meet lots of positive jolly and very friendly MPN patients
You'll read mostly interesting stuff on the Internet, but occasionally some rubbish too so tread carefully. Another good website is patient power, run by a lovely chap called Andrew Schorr, who had leukaemia and now has myelofibrosis - but is absolutely fine. He posts excellent interviews with MPN specialists in the US.
Just a couple of basic tips, the main one being being don't panic, don't be frightened, there are literally hundreds of us out here living perfectly well and normal lives.
Sometimes on a forum like this you might only read rather downhearted posts from folk who aren't so well. We tend not to ask advice by saying " yippee! I'm tickety boo, how about you guys?" Please remember for every person who isn't perhaps quite so hunky dory, there are probably another ten out there who are.
I keep well by drinking loads of water ( 2 to 3 litres every 24 hours) eating an uber healthy diet, and walking briskly - or as briskly as my little elderly dog allows - for at least an hour a day.
So, lovely to chat, and you will I'm sure be fine. There are folk out there who've had MPN's for almost 30 years. I met an 80 year old with PV the other day who still cycles 3 miles to the shops. Crumbs.
Love,
Louise
xxx
Hi Jane, I was diagnosed with ET in may of this year and like yourself had never heard of it and was initially quite worried as it is classed as a blood cancer. Reading posts on here and the Web page has helped me to understand a lot more about mpn's. If you have any queries don't be afraid to ask as there is always someone who has the answer. Most of all its good to know that your not alone. All the best, Ian.
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