ET Watch and wait

Hi I have essential thrombothycemia. I’m 49 and on watch and wait. I’m quite a worrier and last few days have just been overthinking everything. I amd normally in the 500s with my platelets level but this month I have gone up to 676 which has worried me. I have changed work as now having to travel and go in so not sure if the change in situation might not have helped. I feel tired and just any reassurance would help. I walk my dog but wondering if maybe I need to help myself more and do exercise but not sure what really. Appreciate any help.

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Hi @Suzysue75 thanks for posting again.
Have you got a specialist nurse or GP that you can talk to about your platelet results as you medical team know you best
Perhaps tell them, about your symptoms and change of work and situation.
We are all very complex, individual, complex beings
Personally, I am not a medical person, I find that I often feel better for some fresh air and appropriate exercise.
I also find when I feel stressed, anxious or worried that wears me out too.
I also get very stressed if I start a new job.
Please do let us know what they say.
Be very kind to yourself, and I know this is really hard, try and divert your mind by doing something nice.

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Hello there @Suzysue75, fellow Myeloproliferative neoplasms (MPN) survivor. I’m sorry to read of your worries about your platelets. If you’re anything like me awaiting my own blood test results then I imagine you follow along with how yours change each time.

Although I’m not a doctor, what my haematologist and nurses have told me is that our blood cell numbers can change in all sorts of ways, like when we have an infection, for example. Personally I’ve noticed my haematocrit has been higher around times I’ve been stressed, so you may well be right about your change of work affecting yours.

When in doubt, always pass concerns by your specialists. They can reassure you of your own individual ‘norms’ and anything of note in your tests. But I think your idea of exercise is a great one. Would your dog like to walk for longer, perhaps? Or you could go for longer strolls solo, or with friends. Maybe check out local walking groups?

Something I took up again after my diagnosis with Polycythaemia vera (PV) was yoga. I love it! It helps increase energy and reduces the physical aspect of my anxiety as it’s so much about slow breathing, plus it’s great for getting blood pumping around our bodies!

And I agree with dear @Erica about diversions—there are loads of films out now, and all sorts of end-of-year listicles being published. I love to catch up with artsy stuff when it’s wintry. You know what you like to lose track of time doing, so do that I’d say!

Do please keep us posted about how you get on @Suzysue75.

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Thanks for the reply and support and yes will speak to my nurse.

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Thanks for your kind reply. Yes I will look into some of the suggestions and appreciate your kindness.

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Hi
I understand that you’re feeling worried about your recent platelet count. It’s completely normal to feel worries, especially when we are in active monitoring.
Remember, you’re not alone. Many people with essential thrombocythemia (Essential thrombocythemia (ET)) live full and active lives while managing their condition. Active monitoring is a common approach for Essential thrombocythemia (ET), and it means that your healthcare team is closely watching your condition and making adjustments as needed.There are some things I do to help me in active monitoring:

  • Techniques like meditation, yoga, or deep breathing
  • Trying to get enough sleep
  • Eating a healthy diet
  • Staying active: Regular physical activity, like walking my dog, helps me manage stress and improve my mood.
    For more information on active monitoring and Essential thrombocythemia (ET), you may find this resource helpful: Active monitoring (watch and wait) | Blood Cancer UK
    Thinking of you
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Thanks so much really helps I appreciate your time and care and also hope you ar keeping well x

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Hi. I also have Essential thrombocythemia (ET) and often get tired
My hb levels show as being normal but my iron stores level is low
I have an iron infusion every 18 months and that sorts meout
Might be worth asking for your iron stores to be checked
Good luck

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Hi @Valmac great to hear from you again and thanks so much for sharing your experiences
Please really look after yourself I would love to hear what you have been up to