Hi there, I’ve been newly diagnosed with Essential thrombocythemia (ET) and have started with aspirin and will be starting hydroxycarbimide in about 10 days. My concern is that we move house a week later to a new area so I’m wondering whether to wait until after the move before starting treatment as I’m not sure how I may react to it. Another thing I have to consider is my son and family are going to be living with us for a while after returning from abroad. They’ll be arriving only 3 weeks after we move house so you can imagine my stress levels are a tad high. I also have me/cfs so I’ve always had to manage fatigue as best I can but I’m worried that treatment will exhaust me more or do any of you find that fatigue lifts on treatment? Many thanks
Hi @Lynne26 I am so glad that you have found us, welcome.
It sounds as if you have a few fears, questions and practicalities for your medical team as they know you and your whole medical history best.
I have to say you have got so much going on at once, including coming to terms with your diagnosis.
I certainly did not deal well with stress when we moved home last.
As for your son and family moving in with you for a while 3 weeks after your move.
Perhaps you have not got to be the hostess with the mostess.
If you are like me my fatigue really set in after our move.
I am more concerned that you get the continuity of care you deserve.
The Blood Cancer UK support line is also there for you on 0808 2080 888
Please do look after and be very kind yo yourself and if you can pace yourself.
Please do keep posting when you can and I will be thinking about you xxx
Hello there @Lynne26, welcome to the forum. I’m so sorry you had reason to find it, but am very glad you did!
I’m especially sorry to read of your recent diagnosis with Essential thrombocythemia (ET). How are you feeling about it so far? Last year I was diagnosed with a closely related Myeloproliferative neoplasms (MPN) to Essential thrombocythemia (ET) called Polycythaemia vera (PV) and remember feeling so much. It’s been a real learning curve, as I’m sure you’re already experiencing.
As I had no symptoms prior to diagnosis it was quite a shock and made me wonder a lot about how my life could proceed with a chronic disorder and the rubbish cancer-related fatigue I felt.
Although I’m not a doctor, this is where I think your lived experience of ME/CFS might help you as it sounds like you’ve had to adapt to symptoms brought on by that and are probably adept at knowing your energy levels.
I’m not going to lie—after I started a similar treatment to you for Polycythaemia vera (PV), namely daily aspirin and hydroxyurea, I experienced pretty disabling fatigue for a few months, but it gradually faded. Now I’m back to hiking and feeling clearheaded, but it was a struggle at first emotionally and physically.
Maybe you’d like to read the Blood Cancer UK information about Essential thrombocythemia (ET): Essential thrombocythaemia | Blood Cancer UK
Here’s their information about Essential thrombocythemia (ET) treatments with links relating to fatigue: Essential thrombocythaemia (ET) treatment and side effects | Blood Cancer UK
Someone in the forum shared that when fatigue hit them they’d rest from whatever activity they were doing and then resume it later when they’d rested. This helps me a lot personally as I’d get so frustrated about flaking out doing stuff.
Perhaps with everything coming up for you I’d be tempted to speak to your haematologist to see if it’s fine to delay the hydroxyurea for now? For what it’s worth, I’ve taken daily aspirin for years with no noticeable side effects. But I think your worries about a lack of energy in the next few weeks is valid. I’d say always pass stuff by your specialists as I’ve found my own haematologist to be great at adapting my treatment when other life stuff becomes paramount.
Keep us posted about how you get on @Lynne26, really glad you found the forum.
Hi @Lynne26,
Welcome to our forum. I am sorry to hear about your diagnosis. Its sounds like you have so much going on at the moment. I hope you have lots of help and support around you. If you ever feel it would be helpful to talk this through in more detail, please don’t hesitate to give our Support Line a call on 0808 2080 888.
As @Duncan mentioned I would speak with your haematology team and let them about your pending house move. They will advise you if it is ok to delay starting your treatment until after this.
I can already see that you have been given lots of helpful information about side effects and fatigue but I would also mention that it is really important to look after your wellbeing and try to minimise stress as much as possible. I have copied a link here to some of our information on this which discusses ways to look after yourself Mind and Emotions.
Take care and keep us posted.
Fiona ( Support Services Nurse)
Thank you for your kind words Erica. As we’re moving to a completely different area my haematologist will need to change as apparently different health boards aren’t connected digitally so letters etc would get lost. The timing of everything happening at once isn’t the best but having access to a helpline number is wonderful and might help to tide me over till we’re more settled 
Thank you Duncan for your very kind reply. I will definitely look at the information that you’ve highlighted.
I had manageable me/cfs for around 30 years but became bedridden, housebound after a vaccine in 2012. After lots of research, when I could, many holistic therapies and supplements, I had just managed to get to a point in life that I could start to plan and enjoy life again when I was diagnosed with Essential thrombocythemia (ET). It’s been a bit of a body blow as I thought I was doing everything right in looking after myself. I’m forever positive so I’m hoping that once I start hydroxycarbimide that my worsening fatigue will eventually start to lift again🤞🏻 Your experience with it has given me some hope🙂
Thank you Fiona for your kind reply. I’m seeing my haematologist on the 20th November so I’ll be able to discuss with him what the best thing to do would be. The timing isn’t great with my family arriving but that’s something I’ll just have try to manage as best I can 
Hi @Lynne26 perhaps write down all tour fears, questions and practicalities for your haematologist.
Be pleasantly assertive and ensure you get answers,
Yes, the timing isn’t the best.
Please do let us know how you get on after the 20th.
Be very kind and look after yourself
Oh you’re most welcome @Lynne26, glad to be of any support at this delicate time.
So you’ve lived with ME/CFS for 3 decades?! I bet you’ve got some life lessons you could teach us here on the forum, considering your expertise in managing a chronic condition. Not to minimise how big a role it must have played in your life over the years—I appreciate how it’s likely cast a long shadow.
This new diagnosis as well as what you’ve lived with and the imminent changes at home might seem like too much right now. I’d say try not to feel like there’s anything more you could have done to avoid this Essential thrombocythemia (ET) diagnosis—the gene mutations behind our diagnoses occur pretty randomly from what I’ve heard from haematologists. It’s not anything you have/haven’t done that has triggered this diagnosis.
Having survived a heart attack caused by a clot many years ago and PTSD since, my haematologist assures me that there’s nothing I could have done to stop my Polycythaemia vera (PV) from occurring. While eating healthily and keeping active before and since my heart attack has benefitted my heart health, and decreased my risk of another heart attack, nothing about my diet or supplements would have stopped the Polycythaemia vera (PV) from developing. I’m very fortunate to have caught it via blood tests before any further clotting events! Clotting is the main risk from Myeloproliferative neoplasms (MPN) like Essential thrombocythemia (ET) and Polycythaemia vera (PV) so I count myself lucky not to have had another clot.
So I hope you come to feel less like there’s something you haven’t done right regarding the Essential thrombocythemia (ET) and more like it’s just a grim twist of chance. In some ways, although it may not feel like it now, your experiences of knowing fatigue and energy levels might help you tolerating the Essential thrombocythemia (ET).
Do please let us know how you get on speaking with your haematologist and with the house move and so on. Try to take time for yourself when fatigue is too much and don’t forget to rest. Ask family to take on tiring and stressful tasks, I’d say! Hope the move goes really well @Lynne26 
