Hi everyone,
I’d just like to start with that I’m a 27 year old young woman who has just been diagnosed 1 week (and a few days) into having Essential thrombocythemia ('ET') & the JAK2 mutation.
For the moment, I am just taking small doses of aspirin to try to maintain the platelet count.
So I was wondering if anyone else is in a similar situation to me.
Also, I’ve been trying to do my own research and ask my doctors as many questions as I can but I’m curious to know whether a lot of you have either:
• had long lives after receiving the Essential thrombocythemia ('ET') & jak2 diagnosis
• did any other chronic or otherwise diseases come up after diagnosis
• at what point did you start taking chemo or blood transfusions etc to help with the platelet counts?
• do you play sports (skiing, hiking, horse riding etc) and did you continue to play sports after diagnosis
I know my questions are a lot and if you can’t answer them all that’s completely fine I’m just trying to learn anything I can and have come to terms that I won’t always get the answers I want or need with this cancer.
Thank you to anyone who can comment!
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Hi @Becca98 Welcome to the forum.
I’m sorry to hear about your diagnosis
I’ve not had Essential thrombocythemia ('ET') but another Myeloproliferative neoplasms ('MPN') called Myelofibrosis.
There are others on here with Essential thrombocythemia ('ET') who are better placed to advise.
You could also reach out to the @BloodCancerUK_Nurses for specific advice.
Your clinical team will also be a great source of answers to questions so don’t hesitate to ask.
Maggies is another great place where you can speak to someone confidentiality.
Hopefully helps and stay positive. It’s easy to think the worst when you get a diagnosis
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Hi @Becca98, welcome to the Forum, though I’m sorry about the diagnosis that brings you here.
There are lots of members here living with Essential thrombocythemia ('ET') - some for many years - and I’m hoping they’ll see your post and share their experiences with you. I’d also point you towards this thread from another 27-year-old who was recently diagnosed with ET, as there may be some helpful discussion there already.
In the meantime, our ET pages might be useful as you’re building your knowledge. Our prognosis page in particular addresses some of the questions you’re asking - most people with Essential thrombocythemia ('ET') are expected to live a normal lifespan, and treatment aims to protect against complications rather than being needed urgently for everyone.
There’s also a good overview of the different treatment options (including when things like hydroxycarbamide or interferon tend to come into the picture, and why aspirin is often the starting point for younger people with lower clot risk).
If you’d like to talk any of this through with someone, our Support Services team is here (and staffed by expert blood cancer nurses) 0808 2080 888 (otion 1) or support@bloodcancer.org.uk. They’re wonderful at answering questions like yours, including the ones that don’t always have the neat answers we might prefer.
Keep posting, you’ll find this a very supportive community.
Ceri - Blood Cancer UK Support Services
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Hi Becca98, I was diagnosed with high platlets in1993 aged 33 and like you was prescribed a daily dose 75mg asprin. I am now 66 and have lived a long and active life, with fortuneatley few heath issues to speak of. Apart from annual blood tests i pretty much forgot most of the time that I even had high platelets. Around about the year 2000 I moved house and must have gotton lost in the system, as i was never recalled for blood tests. Last year i was called into my gp for a wellman check and of course the alarm bell was raised, as my platlet count was 559. Ten days ago after a consultation with the hematologist i was for the first time told it was blood cancer, put on hydroxycarbamide and i have to have a bone marrow biopsy on Thursday, which i am terrified about. It feels to me that i have just been diagnosed all over agian, but this time it is being called cancer. After all my bleating, i guess what im trying to say is yes, you can indeed have a good life for many years, from where you are now.
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Thanks @Ceri_BloodCancerUK for sharing all this information for @Becca98
I know there are lots of people on the forum dealing with her condition and I’m sure there will be support from lots of people.
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An inspiring post @Motorman
Not so good news on update and I do hope that the Bone Marrow Biopsy goes well on Thursday.
It’s not something any of us would choose to have and at the same time we all realise that’s it’s such an important part of understanding your condition and treatment planning.
Think I’ve had about 10 Bone Marrow Biopsies over the last 2 and a bit years.
My handling strategy tends to be to talk constantly to the nurse keeping an eye on me while the Nurse Practitioner gets on with the procedure.
Also take those deep breaths when they tell you. It does make a difference.
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Thank you for the deep breath tip DuncanB, i will indeed pay great attention to the nursing staff. I am my own worst enemy when it comes to these things, anxiety always has gotten me all worked up.
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Think we all have some anxiety with Bone Marrow Biopsy @Motorman
I always say to myself it’s about half a minute of real discomfort to help the clinical team help me.
If you can find strategies to relax it should help reduce the anxiety.
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