Hi everyone i stumbled upon this Forum and glad i did
Very interesting reading
I was diagnosed with Essential Thrombocythemia just over a year ago
The help i have had from the NHS has been brilliant and i am on daily Hydroxycarbonide and Aspirin.
So just saying hi to you all and wish everyone the best with there treatment.
Hi everyone i stumbled upon this Forum and glad i did
I have been told that my bone marrow results together with my consistent high platelets and megakaryocyte clustering and JAK 2.2% is suspicious of ET.
I have an appointment with a specialist at the Christie next week Prof Somerville as he specialises in MPDs and a scan of my abdomen booked to. At the minute that have given me Aspirin for now.
I am 39 so they said I’m young and healthy I don’t smoke have a good BMI but I still worry I have really heavy legs, sore calf’s and lots of varicose veins on my legs.
Being positive but it is hard isn’t it.
Hi @Leefer and I am so glad that you have stumbled upon our forum, Hi to you too.
I really look forward to hearing more about you and @Vickys01 as you are now both a really welcome as part of our forum family.
We are all about sharing our personal experiences as I felt that I was the only person in the world with my diagnosis when I was diagnosed. It was a lonely, isolated place until I realised that I was certainly not the only one.
Look after yourselves and yes, it can be hard being positive, but for me this forum helps and not feeling positive is OK on here too.
Thanks Erica…its obvious you are a big help to all.
Hi Vicky …sounds similar to my symptoms
Lots of itching as well.
I was diagnosed late and ended up in hospital with acutely low Haemoglobin levels and i had severe anemia so had to have a blood transfusion also
Lot better now and rest assured once you get your diagnosis and treatment you will feel better
There is lots of help especially now they seem to be on track in getting to grips with your illness
Wish you all the best and feel free to ask any questions
Hi @Leefer and a great big welcome to the forum. You will find it so valuable in just reading about others experiences, people sharing their journey and the knowledge and support for the Blood Cancer UK team. Look forward to learning more about you. How are things with you at the moment?
Thanks Nicola…pretty stable at the moment and still working…i drive an HGV for a living
My levels are really good though been having trouble with the right amounts of Iron…having to much deffo dont agree with me though my Anemia is almost gone which is good…like us all the last year has been about coming to terms with things…the tiredness was my biggest hang up…being disciplined with sleep etc is my biggest challenge…that said by reading the Forum i can see there are those with much bigger challenges than me…respect to those folk
I have not really spoke to anyone about my illness in depth so coming n here was nice…a real eye opener.
Sometimes it just good to realise you’re not alone. Sleep is a challenge isn’t. Does your work interfere with sleep patterns?
Not to much now Nichola
Its more if i have a busy weekend or a late night then even just one short sleep night will have a bit of an impact on how i function both physically and mentally the next day.
Notice it with food as well a bit…because part of my illness meansxan almost permanent enlarged Spleen i tend to eat smaller meals…but when i have a day of ‘overeating’ then next day i feel the difference.
Its just learning whats best for you…
Hi @Leefer if I have a busy weekend, a late night, stress or a short sleep night I do not function well physically, emotionally, mentally or practically the next day.
I definitely have got to know how I tick better over the years.
Just very hard to get used to when you are used to being on the go
Getting there though!
Hi Leefer, well to the ET club, hopefully you will continue to be well. The other resource you might find v helpful is MPN Voice website. Lots of info, buddy system, forums etc specifically for MPN patients. I have been diagnosed for 12 years now, like you on HU daily.
Anyway, all the best
Thanks Janet that is nice thank you.
Do you get a break with yours or 7 days a week?
I can have one day off.
Do you mind me asking did/do you have problems with your Iron?
Hi Leefer, the itching I get is a neuropathic itch, it is so deep rooted it drives me crazy, I have dermo cool 5%, it takes a bit to start numbing, I am also on Gabapentin 3600 mg, 1200mg 3 times a day, will start you on low dose to start with then build it up. I also have had photo therapy which helped too, you can only have this once a year. I used to get so frustrated getting antihistamines when it was bad, I even considered cutting my legs it was so bad, but now with the Gabapentin it is so much easier. I hope this has been helpful.
I had an enlarged spleen was put on Jakafi/Ruxolitinub which has shrunk my spleen, I was bothered every two to three days, could lie on left side as it caused pain, hope you get sorted soon, Carol
Thanks Carol…thanks that is interesting…my itching was not that bad thankfully…glad you have got something that helps
Info on the Spleen is interesting as well…very helpful indeed
All the best to you Carol👍
Sorry for the delay, not on this site very often. No I take 7 days a week, but only on two a day now, originally was on 3 a day, so that is good. No never had problems with iron.