Hi there. I suppose i don’t know where to start, I am a 42 year old male and I have done what I imagine every individual when receiving a similar diagnosis has done and googled everything I could and gone down some rabbit holes! The more and more I keep reading about my diagnosis the more confused I get as I cannot find anyone really around my age who has been diagnosed adn I suppose I am just looking for a little help or reassurance.
I was diagnosed 6 months ago in March 25 after experiencing symptoms that got progressively worse for nearly 12 months and luckily got referred to a neurologist who was brilliant. My platelet count by the time of official diagnosis was over 1800 having risen from 1300 over a 5 month period after they suspected it could be Essential thrombocythemia (ET). I started off with 500mg of Hydroxycarbamide a day along with fortnightly injections of interferon. I have since come off the injections due to side effects and up to the maximum dosage of 2000mg of Hydroxcarbamide a day and it seemed to work until about 4 weeks ago when my platelet count doubled from 500 to nearly 1000 in 2 weeks, in the 2 weeks since it has slightly increased again and I have been booked in for a bone marrow biopsy in a few days.
I suppose I am asking how to people cope day to day with this? I live alone and have a young daughter I have 50/50 and have been ill with flu like symptoms for nearly 5 weeks now. I am so fed up and just don’t know what to do or who to turn to and trying to manage work and everything else is impossible some days. I was getting better and felt the difference of the lower platelet count but I don’t know why it has gone back up. Any advice would be fantastic, whether that would be how to deal with it mentally, emotionally or physically would be much appreciated and to know I am not the only one going through this. I see so many different posts about diet, exercise etc but would be nice to hear from someone who lives with he condition on what they do themselves. I know its extremely rare, I have the CALR mutation, and the chances of winning the lottery are better (just my luck) but would be nice for some first hand advice
I’m sorry to learn about your circumstance, and as a recently diagnosed blood cancer patient (April 2025 with Chronic lymphocytic leukaemia (CLL)) i can relate to your desire for help and reassurance.
There is a lot of help available via our forum and i have tagged in our nurses @BloodCancerUK_Nurses given the complexity of your questions to allow them to respond to you.
If you feel it would help please do feel free to call our help line. Our blood cancer support line is a free and confidential service for all people with blood cancer, their friends and family, and for anyone worried about blood cancer.
Im confident there are people with not dissimilar circumstance and reading their posts and experiences may be helpful, but again I’m not the expert so do remember the Blood Cancer UK Support Line is here for you, if it would be helpful to talk things through with one of our experienced blood cancer nurses
Hello @Leocon25 and welcome to this forum. I trust you will find it a supportive space. I will share my story. Like you I was found to have a high platelet count at the age of 35 having experienced various symptoms such as unexplained weight loss, strange tingling sensations in my fingers and infections that I couldn’t shake off. This was in 1992 when there was less understanding of these conditions. At that time a bone marrow biopsy indicated that I had features of Essential thrombocythemia (ET) and myelofibrosis. In recent years the gene tests became available and I have the CALR mutation which I was told has a better outcome. I started off taking an old drug Busulphan and was then switched to Hydroxycarbamide which successfully lowered my platelet count. Having been overactive initially, my bone marrow is now underactive so I no longer require the Hydroxycarbamide. Interestingly my twin sister was only recently diagnosed with Essential thrombocythemia (ET) and she is on interferon injections. She is experiencing flu-like symptoms and fevers almost everyday so it seems these are side-effects of the interferon. I hope I haven’t bombarded you with too much information! I just wanted to say I really feel for you in your current situation. My diagnosis was almost 33 years ago and although things have got more challenging and complicated in recent years I hope this gives you some hope. Sending you warmest wishes, Willow x
Hello @Leocon25 My name is Chris and I was diagnosed with Essential Thrombocythemia around 2 years ago. I fully understand what you are going through, I am still unwell and unable to do physical day to day things. My platelets are around 800/900 and I am only currently on daily aspirin. I understand your frustration, you feel like your lives turned upside down, I’m 46 and every day is different because of other things, mainly really bad fatigue. I have found the @BloodCancerUK-SupportTeam really good and I visit my local hospice regularly for support with various things. Keep positive mate and keep posting, hope you feel better soon.
Welcome to our forum. I am sorry to read about your recent Essential thrombocythemia (ET) diagnosis and the difficult time you have been having. Its hard not to google everything and wanting to find out more about your diagnosis but it can be very confusing and misleading at times. I know you receive lots of advice and support here from everyone.
In case it is helpful for you, we have a webpage on living well with blood cancer that discusses working, exercise and eating well which I have linked here Living Well. We also have a webpage on small things we can do to support our wellbeing during challenging times. It talks through where people can access further support such as psychological therapies etc - Blood cancer: mind and emotions | Blood Cancer UK
Do let your haematology team know how you are feeling or your Clinical Nurse Specialist if you have one so they can best support you and discuss your concerns.
The nursing team would be very happy to help and support you. If it would be helpful to talk things through, please do not hesitant to call us on 0808 2080 888