Recent AF and ET diagnosis

Recent diagnosis
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Hi everyone hope you are all well and coping ok. I was diagnosed with AF in January and Essential thrombocythemia ('ET') in March (after blood tests showed high platelets). I had been struggling for months with sore toes, high bp and fatigue so I felt relieved to finally get a diagnosis. My journey so far has not been great as I seem to be getting some unpleasant synptoms which could be a combination of different medication for the AF and the Essential thrombocythemia ('ET'). However I have great family support and the Haematology unit I am having treatment with are very informative and supportive

Wishing everyone a safe journey

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Hi @Max46 and a warm welcome to the forum.

Getting a diagnosis is always tough and sounds like youā€™re having some challenges.

My diagnosis is a different Myeloproliferative neoplasms ('MPN') called Myelofibrosis.

I know there are many dealing with Essential thrombocythemia ('ET') and a number of specific threads on that topic.

Great to hear you have great support including from your Haematology team.

Iā€™m sure you will get a lot of support from others on the forum.

The @BloodCancerUK-SupportTeam are excellent at pointing you in the right direction for any specific help or resources you might want to access.

Take care

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Welcome to the forum @Max46
Iā€™m glad youā€™ve found us, though Iā€™m sorry to hear youā€™ve had such a rough ride lately.

Itā€™s completely understandable that you felt a sense of relief getting your diagnosis. Living with symptoms and that deep fatigue for months without knowing why is incredibly draining. Finally having a name for it is the first step in getting things managed.

I can certainly relate to the struggle with symptoms and medication. Iā€™ve lived with a blood cancer diagnosis since 2018, and itā€™s often a bit of a balancing act trying to figure out which ā€œunpleasantnessā€ is the condition and which is a side effect of the treatment! Itā€™s brilliant that you have such a supportive family and a haematology unit you can trustā€”that makes a world of difference.

If you ever feel overwhelmed by the combination of symptoms or just want to chat through how your AF and Essential thrombocythemia ('ET') medications might be interacting, the Blood Cancer UK specialist nurses are wonderful. They have a lot of experience with Essential thrombocythemia ('ET') and can offer a really helpful perspective.

Weā€™re a friendly bunch here too so please do chat in the forum whenever you need to , also have a look at some of the older posts you may find some interesting information.

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Hello there @Max46, welcome to the forum. Iā€™m really sorry to read of your Essential thrombocythemia ('ET') diagnosis but am very glad you found us here.

I see youā€™ve already had great advice and tips from @DuncanB and @Jules and would concur that the lovely Blood Cancer UK specialist nurse team are an amazing source for medical and other support, do consider giving them a call.

Iā€™ll share the great BCUK information about Essential thrombocythemia ('ET') here, and as a fellow survivor of Myeloproliferative neoplasms ('MPN'), in my case, Polycythaemia vera ('PV'), Iā€™d say you might find this MPN information useful too.

From my non-medical understanding, Myeloproliferative neoplasms ('MPN') tend to share similar and overlapping symptoms, side effects and treatments. Thereā€™s a lovely bunch of folks around the forum who live well with Myeloproliferative neoplasms ('MPN') like Essential thrombocythemia ('ET'), Polycythaemia vera ('PV') and Myelofibrosis (ā€˜MFā€™) so do have a look around for us, using the search box at the top or Related Topics below.

Apologies for not being sure but is the AF you mentioned atrial fibrillation? Iā€™ve not heard of that being linked to Myeloproliferative neoplasms ('MPN') before, but our blood thickness and its ability to flow becomes important at our blood tests. I wonder if your specialists have mentioned a connection between the AF and Essential thrombocythemia ('ET')?

In fact, Iā€™d say if you havenā€™t already do mention the sore toes, high blood pressure and fatigue to your specialists, they donā€™t sound fun at all. I get the impression that itā€™s good for them to have records of any and all symptoms and side effects we experience as it helps to guide our treatments. Unfortunately, fatigue is so common with these blood disorders that it has its own acronym of CRF (cancer-related fatigue). Here are some tips for managing fatigue: Fatigue | Blood Cancer UK

Itā€™s great that you have such supportive loved ones and specialists, long may that last. Personally I think this sort of support is as important as the treatments, so Iā€™m really glad your experiences are positive at this early stage after diagnosis.

Please do keep us posted about how you get on and donā€™t hesitate to ask around the forum what you may need @Max46.