Hi after a diagnosis of another illness I had bloods taken that consultant says is Essential thrombocythemia ('ET'). The rest was a blur. Horrific to be rushed through for more bloods, spleen ultrasound followed and just had bone marrow biopsy which was ok for me. On low dose aspirin now and consultant mentioned hydroxy and brushed off side effects. This potential treatment means I cant be treated for other illness. Still in shock and disbelief as I have no symptoms. Obviously my life has changed massively since this with raw emotions and hard to think positively.
5 Likes
Hello @Anon244
Thank you for taking time to reach out and post on the forum
I’m sorry to learn about your diagnosis - my heart goes out to you
From what you’ve said - it seems there is an awful lot going on and it must be difficult to process everything. Please take your time and take one step at a time.
I hope you find this forum a source of information and comfort that allows you to process things. I certainly have, since my diagnosis of Chronic lymphocytic leukaemia ('CLL') in April 2025, and it remains the case. Please always follow any advice given by your medical experts - but beyond this remember we have a dedicated team of nurses and also trained support service officers offering support and information to anyone effected by blood cancer**.**
I’m confident there will be others with not dissimilar circumstance who can relate more closely to your situation, and hopefully engage with you and share experiences, if you feel that may help you.
If you prefer you can always call us for free on [0808 2080 888](tel:0808 2080 888) (Option 1) to speak to one of our Support Service Nurses in confidence.
Our phone lines are open:
-
Monday, Wednesday, Thursday, Friday: 10am – 4pm
-
Tuesday: 10am – 7pm
-
Saturday: 10am – 1pm
-
Sunday: Closed
-
Bank holidays: 10am – 1pm
Alternatively, call us anytime and leave a message and we’ll get back to you within one working day.
Do please let us know how things go - it would be lovely to hear back from you.
Take good care of yourself
Kind regards
Mike
4 Likes
Hi @Anon244 and welcome to the forum.
Your post took me back to when I was diagnosed with follicular lymphoma 9 years ago. Like you, I had no symptoms and it was just found by chance.
That first appointment is such a blur. I always think an appointment should be offered a few days after diagnosis as I wanted to ask so many questions.
It sounds like things moved quickly for you and I can imagine it’s been overwhelming and an awful lot to process.
I remember finding it hard to think positively. I think lots of the forum members felt the same, especially when the diagnosis was so unexpected.
I would suggest writing all of your questions. Do you have a follow up appointment or a clinical nurse specialist you can contact if you need to ask anything?
Please use the support line if you feel it would help. Sometimes it really helps to talk things through.
There will be other forum members with the same diagnosis who will be able to share their experiences with you, which I hope will help.
Please give yourself time and space. I know it’s a roller coaster of emotions. Have you got people supporting you?
Nichola
4 Likes
Hello there @Anon244, welcome to the forum at this difficult time. I’m so sorry to read that you were diagnosed with Essential thrombocythemia ('ET') and the shock of it all, you’ve described it so well.
When you’re ready, here is the great Blood Cancer UK research about Essential thrombocythemia ('ET') with many links to further information to refer to: Essential thrombocythaemia | Blood Cancer UK
In 2023 I was diagnosed with Polycythaemia vera ('PV') after much of the same testing it sounds like you’ve had. May I just say I’m glad your BMB went okay, they can sometimes be painful according to other forum members. You likely know that Essential thrombocythemia ('ET') and Polycythaemia vera ('PV') are closely related types of Myeloproliferative neoplasms ('MPN'), which you may like to read about as they have overlapping symptoms and treatments: What are myeloproliferative neoplasms (MPN)? | Blood Cancer UK
I see @GenesisDevice and @Nichola75 have offered great tips and I’d second their suggestions of calling the support number. You’ll get to speak to blood cancer specialist nurses who are lovely. They can refer you to other resources, for example how to seek counselling if that is something you’d like. At this stressful time I’d say it’s very understandable to be feeling such raw emotions, and perhaps it would be stranger still not to.
While we have individualised treatments and they affect us differently, I also take aspirin and have taken hydroxyurea since diagnosis with Polycythaemia vera ('PV'). My haematologists can be a little blasé about me taking chemotherapy, but they tell me it is considered mild and has decades of research and safe usage behind it. This is what swayed my decision to take it, also the fact that I was at high risk of clotting due to previously surviving a heart attack caused by a clot.
I live with other illnesses too and make sure to check with my haematologist first before treatments for those, for example any time there may be any operations as our blood can be much thinner. I’d say from my non-medical perspective that it’s wise to keep the risks of our treatments in mind when speaking to other doctors and to remind them of our bleeding risks with Myeloproliferative neoplasms ('MPN'). Perhaps you could talk through with the Blood Cancer UK nurses about the treatments that hydroxyurea affects?
Hope that helps a little @Anon244. Please know you’re not alone with an Essential thrombocythemia ('ET') diagnosis and that there are many of around the forum living well with Myeloproliferative neoplasms ('MPN'). Please keep us posted about how you get on, and do look further around there forum and consider reaching out to others living with Essential thrombocythemia ('ET').
2 Likes
Hi Anon
Sorry to read about your dilemma.
Think positive stay strong and listen to your body.
I’m recently diagnosed with Essential thrombocythemia ('ET') on hydroxy for 3 weeks now. However I just got told after bloods it’s not changed my platelet count so increase my dosage 2 one night 1 next night.
Listen to your care team and stay strong.
1 Like
Thank you for your reply. May I ask how even at this early stage how you find the meds. The side effects seem really unpleasant but I appreciate I may not have a choice. I read conflicting information about this.
I appreciate all who have replied to me to date. Thanks for your advice a d words of support,
1 Like
Hi Anon
Side effects
Tierd no energy is the biggest one as the week draws to the end. I spend Saturday Sunday recharging sat about watching TV bed at 8pm asleap for 9pm but I do wake early between 6 and 7am
I think it’s because I take my hydroxy at 7pm
Brain fog and constant headaches back of the head is the other. I can’t do what I could before ie bending down to pick something up I go slow and unsteady.
Gym I’m back in there walking treadmill no where near what I could do.
Nothing else
My son sent me a link but I can’t link it
Try and Google the spoon theroy
2 Likes
Hi I feel your pain..hopefully I can reassure you a bit..I have had Essential thrombocythemia ('ET') for 7 years & been taking asprin & daily hydroxy..most of the time I feel I do pretty well..my husband and I do an awful lot of walking..I do 80mins in the gym & swim four times a week..I do have a few issues..poor sleep and feeling very hot and clammy during the night..being the most annoying..also feeling very anxious prior to my 3/12 blood tests & haematologist appointments..it is very hard not to worry and at times it is overwhelming..you will feel less stressed in time.
2 Likes
Hello there @Gaily, welcome to the forum and thank you for your reassurance. It’s great to hear from you 7 years after a diagnosis like Essential thrombocythemia ('ET')—I live with Polycythaemia vera ('PV'), which you likely know is closely related, and also take aspirin and hydroxyurea.
Sounds like you lead a very active life which has got to be great for strength and other healthy benefits that we tend to be recommended with these Myeloproliferative neoplasms ('MPN'). I like hiking, urban walks, and occasional kayaking, although it’s more like active floating!
If you haven’t already, do pass that poor sleep and feeling hot at night by your doctor, maybe even your GP. Always worth passing any new or changing symptoms by our specialists too, I’d say. My haematologist helped me get over insomnia! There may well be ways to offset those symptoms you described, sounds frustrating to tolerate them.
Has your haematologist said they could be a side effect of the Essential thrombocythemia ('ET')? There’s more information about Essential thrombocythemia ('ET') and its side effects from Blood Cancer UK here if you fancy a read: Side effects | Blood Cancer UK
Do have a further look around the forum @Gaily by using the search box at the top, there are many forum members who live with Myeloproliferative neoplasms ('MPN') like Essential thrombocythemia ('ET').
And may I just say it’s lovely to see @Hugo greeting you too @Anon244. If it’s any comfort, it took my body about 3 months to get used to daily hydroxyurea, and I’d say now looking back that the fatigue was pretty disabling at times. There were days where I couldn’t really do much and it got me down. But the fatigue did fade (mostly) and my haematocrit and blood cells have stabilised. I’m back to hiking and have an active dog to keep me on my toes now.
Sorry to hear you also experience brain fog and headaches though, very annoying. I still get occasional days of fogginess but try to go with it and not let it frustrate me in the moment. Easier said than done! I believe any exercise is good for us with these Myeloproliferative neoplasms ('MPN'), but overdoing it is just not worth the fatigue and aches afterwards!