Hi I’m new here and last week received a diagnosis that I was jak2 positive and have ET. Came as something of a shock and I don’t think the consultant handled telling me v well at all - just appeared to want to give me leaflets and get me out the door with a prescription for hydroxycarbamide.
I have known for over 20 years that I had a higher than ‘normal’ platelet count - can’t remember earliest count but seems to have been in the 500-520 range for the last 10 years and 510 at last test. I think I’m healthy, no obvious symptoms of ET as far as I can tell, normal bp, non smoker, not overweight, good diet, the only issue I can see is my age (58) and that I’d had a previous “incident” 20 years ago that resulted in a clot- but this was from a ‘trauma’ of a type that usually would result in a clot.
I ‘m now totally stressing out as I feel I’m being rushed into taking this medication (although I’ve not started it yet) when I wonder if I should just be on aspirin for the time being. I’m disappointed with the way I was given the diagnosis and I wasn’t sufficiently prepared or composed to ask the right questions. I’ve looked at the list of consultants on here but was wondering if there were any others in the UK NE area?
I guess I’m just trying to process it all at the moment.
Thanks
C
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Cb1001
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Hi, I was diagnosed with ET jak 2 . 15 months ago and can relate to your experience with the haematologist at diagnosis, I wasn't filled with confidence. I have put off starting meds other than aspirin while I searched for a specialist but my platelets haven't exceeded 500 yet. I have an appointment with the MPN team at Guys next month and will be happy to follow their advice. Just wanted you to know you are not alone. Cant really offer advice, only shared experiences, although I would suggest asking for a referral to an mpn specialist.
Hi, C, sorry to meet you here but it’s a good place. You will probably remain quite shocked for a little while but when you do get things sorted out and processed it really is much easier. I have a very very, very similar story to yours. I don’t have much in the tank right now but I will say what I did as I was unhappy with the HU prescription, I went to a different haematologist, someone that spent half an hour with me and asked me many questions and explained things in depth. She put me on aspirin meanwhile and ordered a BMB bone marrow biopsy…thankfully!
Turned out I have Myelofibrosis not ET (I’m jak2 as well) and it’s fairly advanced bone marrow scarring, I think I have actually had it for five years, it has been fairly asymptomatic until recently…well, a couple of visual impairment‘s and tolerable erythromelalgia.
The other thing that I have learnt that’s important is to have an NGS (next generation sequencing and sometimes called panels, I think, and a number of other things !) to determine if you have more mutated genes, you will learn that they play a big role in prognosis and treatment.
You’ll get lots of help here and know it isn’t as bad as the feeling you get from reading online, no matter how impressive the literature and it’s source.
Wishing you all the luck in the world and hope you find a competent specialist and have that bone marrow biopsy. Do let us know how you go.
Hi Magentas, thank you for replying and sorry to hear your diagnosis. The consultant didn’t mention anything about a bone marrow biopsy but I’m hoping to speak to one of the nurses on the team and find out more. I’m just a bit overwhelmed at the moment with it all.C
Hello Cb1001 and welcome to our forum. It is very daunting when you are first diagnosed, and it's a shame that you didn't have a good experience when being told that you have ET.
Take your time to digest the diagnosis, I would suggest that you read the information on our website mpnvoice.org.uk, there is lots on there about ET, medications, symptoms and how to manage them and lots of other tips to help you.
Having to start medication is also a huge step and one that you need to discuss fully with your haematology team, do you have the contact details for the haematology nurse specialist in the department, because it would help you to talk to the nurse about starting medication.
It also might help you to have a buddy to talk to for one-to-one support and advice, a buddy is someone who has the same MPN as you and is taking the same medication, and can talk to you from the perspective of someone who really understands what it is like to live with ET and also taking Hydroxycarbamide. If you feel you would like to have a buddy then please email me at buddies@mpnvoice.org.uk.
Hi Maz, thank you for the advice. I contacted the hospital and have spoken to one of the specialist nurses and hopefully will arrange an appointment with them to discuss further. It appears I was given the diagnosis and prescription by the doctor before the letter was prepared to go out to me telling me about the diagnosis and how to contact the nurses to discuss etc. I still have an awful lot to take in and may take you up on the buddy offer when I’ve processed a bit more.
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