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 
Hello there. I am new to this forum and here for my Dad, 84, who was diagnosed with Essential thrombocythemia (ET) years ago. I just wanted to say to you that I gave him hydration packs when he was visiting me (I live in the desert - US). He got such a lift and for the last several months has been taking it every other day. It brought his platelet levels down and his energy is better!
Hey there @KatMP, welcome to the forum! So lovely that you’re here for your dad.
I also live with an Myeloproliferative neoplasms (MPN) like your dad, and also happen to be in the US like you, but not quite a desert region (yet)! I know the dry heat well. Have to admit I hadn’t heard of those hydration packs you mentioned as my haematologists haven’t recommended them. What are they?
Anyway, like @Erica says on your other posts it’s probably wise not to recommend medicines or supplements as we all have such individual conditions and treatments which our own doctors need to prescribe with complex blood disorders like Essential thrombocythemia (ET) and Polycythaemia vera (PV). Changing our intake of certain nutrients can really affect our blood cell numbers which we need to be careful of with these Myeloproliferative neoplasms (MPN) due to clotting risks and so on. Also, forum members tend to be in the UK where I’m sure you know it’s rather un-deserty!
Does your dad have phlebotomy as part of his treatments? I ask as folks here and my phlebotomists gave a great tip early on after my diagnosis with Polycythaemia vera (PV) to drink loads of water the day before phlebotomy. It helps hydrate our veins and thus makes the procedure pass more easily, less painfully, and faster too. Just an idea to help your dad, should he have phlebotomy.
Do keep us posted about his your dad and you get on @KatMP!
Hi There Duncan! Yes, agreed on what Erica said. Here was my response (in case others miss it):
Yes, good advice Erica! You want to check with a professional on your individual needs. And, if asking about & researching salt, be sure to differentiate between table salt, himalayan and celtic.
It could be that Dad had been lacking minerals as he is very active for his age. It is harder, as we age, to get hydrated. So add his mountain hiking and all of his other outdoor adventures & he could have been depleted some. I do think a good mineral balance is essential for health, but Erica is right - check on amounts, kinds, and whether or not it is right for you.
Thanks for the tip Duncan! He has very regular blood draws. He believes these are to check his levels but perhaps there is more to that because they are so frequent?
Well, Dad lives in Pennsylvania. 
No desert there. He is nearly 9 months into one doc-approved hydration pack every other day. It is basically lemon juice powder, monk fruit extract, pink himalayan salt, and coconut powder. If anyone’s health professional allowed I’d suggest a solid recipe of your own & use the highest quality ingredients you can get.
PS. Though he’ll never know for sure, he thinks he may have developed Essential thrombocythemia (ET) due to being at Camp LeJeune when the water was full of contaminants. But, he tries not to think about that too much. 
Hello again @KatMP, thanks for explaining the hydration packs. I googled them as I was so intrigued—they sound very flavourful and I can see how they can help after exercise, especially someone who hikes mountains like your dad! I’m a keen hiker too and always have to remind myself to eat something sugary and something salty afterwards or I can develop a sort of dehydrated brain fog the following day.
Glad to have given a tip your dad might be able to use! I know Pennsylvania quite well, having close friends in steely old Pittsburgh. For what it’s worth I also have frequent blood tests like your dad, usually monthly now. From what my haematologist has said, blood testing is the easiest and fastest way for our doctors to check if our blood cells are misbehaving so it’s good to have them frequently, especially with Myeloproliferative neoplasms (MPN) where our blood cells are known to proliferate. So I’d say it’s good your dad has them often and not a sign of anything untoward going on. If he’s not taking any medicine then that’s about the closest we can get to active monitoring AKA “watch and wait” treatment. Another good sign for living well with a chronic blood cancer like Essential thrombocythemia (ET), and perhaps being at lower risk of clotting events, although I should reiterate that I’m not a doctor—just very inquisitive of mine!
Sorry to hear of your dad’s exposure to the contaminants in Camp Lejeune, that would be a link I’d make too. I’ve asked my haematologist about possible causes for these Myeloproliferative neoplasms (MPN) and he said the only one he’d mention as likely was being around smokers in childhood or exposure to contaminants. Such a shame that we still have so many toxic substances around us but here we are 
Looking forward to hearing more of how your dad gets on @KatMP. Thanks for that hydration pack tip!
Thanks Duncan! And yes, it IS a shame we must worry over all of these things, for sure. I wish you the very best in your health journey!!
Hello all …
I have been diagnosed with Essential thrombocythemia (ET) … (6years ago )I take clopidogrel& Hydroxy…
My concern is the breathlessness I experience after or before going to the toilet … I was told years ago that my experience is mental health & not Essential thrombocythemia (ET) … but after much experience of this breathlessness I do not believe it’s mental health … so many health professionals do not have adequate information about Essential thrombocythemia (ET) & the other Myeloproliferative neoplasms (MPN)…
Also so much giddy head stuff & only able to eat the most plainest of foods as my body will not tolerate sugar or caffeine & as many other things … but that’s ok , I’ve learned what my body will tolerate & what it won’t … it’s the breathlessness that is so worrying … please advise if anyone can … love to you all … Shisha
Hi @shishabell good to hear from you again.
Perhaps it is worth a visit to your GP about your breathlessness and tell them what you have been told already, when it came on and comes on etc., we are complex beings.
Please do let us know how you get on and really look after yourself.
Hello …I meant to ask has anyone on this site any experience of breathlessness who has et & takes hydroxy ? I have never met a GP who even knows what an Myeloproliferative neoplasms (MPN) is,.This is why I want to ask a person with the same condition , have they experienced the same ?be so grateful for any experiences or views from people with the condition…thanking you so much … Shishabell 
x
Hey there @shishabell, sorry to read of your Essential thrombocythemia (ET) and concerns about breathlessness. I have a similar Myeloproliferative neoplasms (MPN) to you, Polycythaemia vera (PV), and I’d say take any worries about symptoms new and old to your specialists. Like you say, some GPs haven’t even heard of Myeloproliferative neoplasms (MPN), although perhaps you could ask yours to look into it considering they have a patient with Essential thrombocythemia (ET)! My own family doctor has rather sweetly done some reading so she knows more of what to look out for with my Polycythaemia vera (PV) stuff.
Although I’m not a doctor, I am a psychotherapist and would say breathlessness is not a mental health symptom I’d put down to visiting the toilet (unless that is a particular trigger of traumatic memories). My own haematologist asks me about my breathing when I see him, which makes me wonder if it can indicate something beyond my understanding.
Anxiety, for example, does affect breathing, but it tends to cause faster, shallower breathing rather than breathlessness. Breathing slowly and deeply can help the physical side of anxiety, if that is an issue for you. You know your body better than anyone though, so if it feels off then it needs checking just to be sure.
So I’d say pass it by your Essential thrombocythemia (ET) specialists so they can reassure you. Always wise to share any physical symptoms with our haematologists—it helps me reduce my own anxiety!
Hope that helps, do let us know how it goes @shishabell.