Fatigue with Hydrea

General chat
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Hello , my name is Shannon and I was diagnosed with Essential Thrombocythaemia ('ET') Jak 2 in 2021 and have just started hydrea 500 milligrams daily 5 months ago when I turned 60

Hello ,

I was diagnosed with Essential Thrombocythaemia ('ET') 5 years ago and at age 60 have started taking hydrea 500 milligrams daily in April , my platelets have gone from 750 to 388 and my RBC from 16 to 13 I was feeling fine until about 3 weeks ago when I started feeling fatigued , especially in the afternoons. I am wondering if this may be related to the drop in RBC ? I know I am in the normal range but it is still a drop for me . I live at high altitude and other than the Essential Thrombocythaemia ('ET') am a healthy and active person, walking, hiking and kayaking almost everyday. My oncologist has me on 6 days a week instead of 7 for the hydrea so I assume she doesn’t want my RBC to go lower. When I mentioned my fatigue they were a bit dismissive saying the red blood cell count was within the normal range. I am curious if anyone else has experienced this. Do our bodies just adapt to the new normal? I do go in next week for a blood count curious to see where I am at. Thank you

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Hi @Painter Shannon welcome to the forum.

I’m sorry to hear about your diagnosis and feeling of fatigue.

My diagnosis was another blood cancer called Myelofibrosis.

There is a very active group on the forum dealing with Essential Thrombocythaemia ('ET') who will be better placed to share experiences.

None of us forum members can offer medical advice.

However the wonderful @BloodCancerUK-SupportTeam who can connect you to the @BloodCancerUK_Nurses

With it being a Bank Holiday in England today it will be tomorrow before any of the team will be back to work.

I’ve included a link to the Support Team incase you wanted to reach them directly

Hope that helps and take care

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Hi @Painter I actually have another blood cancer but I have learnt to write my questions down be pleasantly assertive when I ask questions of my medical team and I don’t leave the room till I get responses. I was diagnosed 22 yrs ago and I manage my symptoms daily, but I am fitter now than I have ever been and walk a lot and do Pilates and a dance class weekly.Perhaps your questions about our bodies adapting to a new normal should also include whether we adapt mentally too. Perhaps just give yourself time and be kind to yourself.

By the way I do find my Blood test results do naturally fluctuate a bit.

Look after yourself and @DuncanB has given you the Blood Cancer UK support line details if you need them

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Hi @Erica I just realised that I had tagged you as someone with Essential Thrombocythaemia ('ET') and just noticed on another post your diagnosis.

I’ve edited my original post.

Great advice in your post as always.

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