New diagnosis ET

Hi everyone
After a nightmare the last few weeks starting with a blood clot in my little toe several tests and visits to hospital just been diagnosed with essential thrombocythaemia (Essential thrombocythemia (ET)) certainly wasn’t expecting that heads been all over this last week started on 500mg hydroxycarbamide and back to haematologist on 30 December just reaching out for some information on this disease as really didn’t even know it existed I have been tired and I ache in my legs and arms mostly just wondering if this is common thanks :pray:t2:

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Hi @Joanne1970 I am so glad that you have found us, yes, the last few weeks must have been a nightmare for you.
I have another condition, but what I do relate to are your feelings of your head being all over the place. I feel my thoughts and emotions have been all over the place since I was diagnosed. They are often not logical and can conflict with each other.
You ask for information so I will copy you the details from the Blood Cancer UK website on Essential thrombocythemia (ET) which I hope will answer your questions
[Essential thrombocythaemia | Blood Cancer UK (Essential thrombocythaemia | Blood Cancer UK)
I reckon it is also a weird time of year ( I was diagnosed at the same time of year) and felt in a bubble with the holiday period going on around me,
Now is your opportunity to write down your fears, questions and practicalities for your appointment on the 30 Dec
Be very kind to yourself and ask for medical speak to be put into plain English and please do let us know how you get on and the Blood Cancer UK support line is there for you on 0808 2080 888

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Thank you @Erica for your response I will have a read and right down my questions I have for my next visit and try make some sense of all this

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Hello there @Joanne1970, welcome to the forum. I’m so sorry to read of that clot you experienced and the diagnosis with Essential thrombocythemia (ET). I bet you weren’t expecting all that! I had a similar experience last year with being diagnosed with a related Myeloproliferative neoplasms (MPN) to yours called Polycythaemia vera (PV). Isn’t it a lot to take in?!

Sadly, cancer-related fatigue is so common with cancers like Myeloproliferative neoplasms (MPN) that it has its own little acronym of CRF. Most of us with these sorts of diagnoses will experience fatigue, unfortunately. I went from no symptoms prior to diagnosis to terrible fatigue after being diagnosed with Polycythaemia vera (PV) and starting hydroxycarbamide, but over a few months the fatigue faded. Still get a bout now and then, usually when very stressed and/or overdoing things physically.

There’s a couple of things that I think helped me improve my energy which I based on some research I read about how to deal with CRF. The main one is to get into a regular sleep routine and waking time so you can get daylight into your eyes every morning which helps regulate our circadian rhythm. Sounds a bit kooky but it’s scientifically proven.

Another way to increase energy is to do any kind of exercise, and when our bodies are too fatigued or achy for getting out walking or anything more strenuous we can still try some slow stuff like yoga, tai chi or Pilates. Yoga really helps me personally and I do it in front of the telly so no busy sweaty yoga classes for me!

Oh and the one thing that always seems to help me when fatigue kicks in is to rest whatever I was doing and to resume it later. Pushing through fatigue just seems to make it worse in my experience so resting and then resuming it is!

Honestly, after getting back into yoga I’m now fitter and bendier than prior to diagnosis. I also love walking which might not be so appealing in winter, like cycling, but I suppose there are always gyms with treadmills or home gyms.

Here’s the great Blood Cancer UK information about the Myeloproliferative neoplasms (MPN) family of blood cancers, which Essential thrombocythemia (ET) is a type of: What are myeloproliferative neoplasms (MPN)? | Blood Cancer UK

Here’s their information about fatigue: Fatigue | Blood Cancer UK

Let us know how you get on @Joanne1970 and what you find helps that dratted fatigue!

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Hi @Duncan thanks for your message I am back at my haematologist on 30/12 so will be asking lots of questions as think I was just in shock last week so didn’t really ask anything. Needed this time to sink in really am struggling with the fatigue and now come down with a cold and sore throat but as soon as feeling a little better will definitely be getting out for walks and maybe I’ll try a yoga class

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Hello again @Joanne1970, it’s my pleasure to offer any support, especially at this early stage after diagnosis. I remember it well!

Sorry to hear you’ve come down with a lurgy, although perhaps to be expected after such a big shock at this time of year? I’d say take it easy and make sure to lean on loved ones right now. Shock can be a bit like grief, coming and going, but I like to remind myself that there’s always a new day just one sleep away.

I’d say, in regards to feeling like you didn’t ask enough of your haematologist, keep notes of changes and any new physical stuff. Being able to share these with your haematologist will help them keep your treatment specific to you and any symptoms you experience.

Bet doing some yoga will be great if you fancy it. Hope it goes well with your haematologist next week and do please let us know how you get on @Joanne1970.

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Hi @Joanne1970

From the mouth of my haematologist “it’s a good one”! I won’t say what my reply was!
I was diagnosed in Feb this year and currently on aspirin. I see my consultant every 3 months for a chat to see how I am etc. have to say they have been very good and I’ve found that no question is a silly question. I’ve also done a fair bit of research myself.
We’re all part of a “club” we really don’t want to be in but everyone here is amazing.

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Hi @Joanne1970 - I want to say welcome to the club but I expect you, like the rest of us, would rather not be in it at all!!

I was diagnosed with Essential thrombocythemia (ET) and Chronic lymphocytic leukaemia (CLL) this spring and before diagnosis my head was all over the place, but this seemed to settle once I had actually had the diagnosis. The extreme fatigue took about 4 months of being on treatment ( pegasys) before it lessened. I now can lead an almost normal life just with afternoon sit downs. I agree with @Duncan and don’t try to push through tiredness- take a break , it’s really important to rest when tired. Exercise when you have the energy to. Hope this helps

Gillyj

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Oh goodness @Happy2019, I think I may have had some strong words too if my haematologist said that! I mean, none of these horrible disorders are plain-sailing, but some of us drift through more unscathed than others. I’m glad you’re here to empathise with.

And @Gillyj I’m so glad you’re able to live a more normal life again. Even having the energy to play with grandkids is something I bet you don’t take for granted. I certainly appreciate many activities I never thought could be so tricky, like simply getting up off the sofa or thinking through a plan to completion.

Here’s to less fatigue and more simple pleasures!

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@Duncan
Oh he got told alright!!! I didn’t hold back!!!

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Ha ha ha I would have loved to see that @Happy2019! How flippant of him to speak like that!!! Hopefully no one else will hear that nonsense from him now, thanks to you :nail_care:t3:

He’s no longer there thank god! If he had the same bedside manner wi the his other patients as he had with me I wouldn’t be surprised if someone didn’t deck him! If I hadn’t been in so much shock and upset I probably would have!!!

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