Hi everyone, recently diagnosed with Essential thrombocythemia ('ET'), currently on aspirin with a platelet count of high 900’s, haematologist wants to “watch & wait” for the time being before putting me on treatment. ( I’m 43) Currently on treatment for high blood pressure & have low iron & b12 - having loading dose of injections at the moment. For the last year or so I’ve experienced dizzy spells where I feel I could pass out & more recently bone pain specifically in upper arms & back. Are these issue that anyone else experiences related to Essential thrombocythemia ('ET'), would these symptoms improve with treatment? It’s all really new to me & just feel I’ve been told this news a given no plan in place for feeling better?
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Hello there @MrsB, welcome to the forum. I’m so sorry to read of your diagnosis, I imagine it’s been a bit of a whirlwind if it’s anything like when I was diagnosed similarly. I’m so glad you found the forum as there are many folks here who live well with Myeloproliferative neoplasms ('MPN') like Essential thrombocythemia ('ET') and Polycythaemia vera ('PV'), so you’ve come to the right place.
Firstly, I’ll share the great Blood Cancer UK information about Essential thrombocythemia ('ET') here: Essential thrombocythaemia | Blood Cancer UK
Essential thrombocythemia ('ET'), Polycythaemia vera ('PV') and Myelofibrosis (‘MF’) are types of Myeloproliferative neoplasms ('MPN') which you may like to read about as they tend to have similar and overlapping symptoms and treatments. Although I’m not a doctor, you’ll read that aching bones are annoyingly common with Myeloproliferative neoplasms ('MPN') but that our treatments aim to reduce that and other symptoms: What are myeloproliferative neoplasms (MPN)? | Blood Cancer UK
You’ll find lots of other links and information about typical treatments for Essential thrombocythemia ('ET') in those links above and I’d say the BCUK research is my first point of reference, but MPNVoice is also really helpful and they even have in-person conferences (“forums”) to attend: https://www.mpnvoice.org.uk/
And finally, I’ll share here this forum thread of lovely folks who live with Essential thrombocythemia ('ET') and tolerate its treatments and their side effects in case you’d like to reach out directly: ET diagnosis finally sinking in
Hope that helps a little @MrsB, I know it’s a lot to take in at first so take your time.
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Hi @MrsB
I’m sorry to hear that you are feeling unwell.
It’s really hard when you are given a diagnosis and feel like you don’t have a plan. Often watch and wait can feel like this. I have a different blood cancer that I am on watch and wait for and I hated not having a plan. However, this has got easier as time has gone on and I see it as a treatment in itself.
However, it is important that you have somebody you can contact if you have questions or need to talk about any new symptoms. Do you have a clinical nurse specialist or somebody you can contact to talk to about how you are feeling?
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Hi @MrsB welcome to the forum, though I’m so sorry about the diagnosis that brings you here.
Duncan and Nichola have said much that I hope is helpful, and it’s good to see you’ve had such warm responses already. I just wanted to add a couple of things.
On your symptoms - the dizziness and bone pain are worth raising with your haematology team if you haven’t already, and I’m going to tag our Blood Cancer UK nurses (@BloodCancerUK_Nurses) in case they can offer some context around how those kinds of symptoms can sit alongside Essential thrombocythemia ('ET'). They’re much better placed than I am to speak to that.
Nichola’s question about a clinical nurse specialist is worth following up on if you’re not sure -having a named contact who knows your case can make a huge difference, especially in these early weeks when new symptoms and questions come up. If you don’t have one yet, it’s worth asking your haematologist.
In the meantime, our free Support Line is there if you’d like to talk anything through on 0808 2080 888 (option 1) or support@bloodcancer.org.uk.
Keep posting whenever you need to.
Take care,
Ceri - Blood Cancer UK Support Services
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Hello @MrsB
Welcome to our forum and thank you for your post.
We are so sorry to hear about your diagnosis of Essential thrombocythemia ('ET') & can imagine this was a shock for you.
Please know that you can talk through any of this with one of our nurses on 0808 2080 888 or support@bloodcancer.org.uk.
I can see that Duncan, Nichola and Ceri have all offered great advice.
To add, the symptoms you are describing could be from low iron & vitamin B12 or from the Essential thrombocythemia ('ET') itself.
Low iron can cause fatigue, dizziness and low B12 can cause numbness and pins & needles/ feeling that muscles are weak as well at Essential thrombocythemia ('ET') itself can cause these issues.
You can read more about the symptoms of Essential thrombocythemia ('ET') on our page Symptoms of essential thrombocythaemia (ET) | Blood Cancer UK.
Treatment can sometimes help with management of symptoms, but your team will be able to provide more information on if this would be suitable at this point in time. We would strongly advise calling your haematology team/ clinical nurse specialist and perhaps looping in with your GP to update them on how you are feeling, especially as you mentioned newer bone pain to your upper arms and back as they may need to assess this.
It’s important to keep your haematology/ treating team updated with how you are feeling so that they can support you the best they can, they should also be able to provide you with a plan going forwards and what to expect.
Take care & warm wishes,
Emma (support services nurse)
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