I was recently diagnosed with Essential Thrombocythemia (Essential thrombocythemia (ET)). I’m 27, and yet to start any treatment pending a meeting with my haematologist in a couple of weeks so it’s all very fresh. My platelet count is nearly 2million/microlitre which is quite advanced even beyond the threshold for a high platelet count. I’ll probably need to be on weekly interferon injections. Symptom-wise, I’m prone to headaches and fatigue most of all. I also have hyperhidrosis so being dehydrated is already a risk which exacerbates both of those symptoms. I really enjoy being active and do a lot of sport, but I’m getting quite inside my head about these things, thinking that if I exercise too hard I’ll have some form of thrombotic event as a result of the blood pressure increases etc.
I have a pretty relaxed job in the civil service where I largely my work from home; work are super supportive which is helpful, as is my partner, but she works an insanely demanding job in medicine that’s heavily stress-inducing and I’m trying my best not to worry her.
It’s challenging to manage the psychological impacts because at my age there’s very little research. The evidence seems mostly aimed at those in the >60 range which makes it difficult to see what the realistic impacts are on an otherwise healthy young adult. I’m worried about the availability and storage of interferon whilst travelling also, which I do often.
Are there any other people in my approx. age range with Essential thrombocythemia (ET), or know someone that fits that criteria?
What symptoms are you experiencing?
Are you on interferon or another treatment, and how are you dealing with this?
Have you experienced any thrombotic events?
Thanks for reading the waffle I’m not yet used to discussing this in a focussed way, so it all comes out as garble at the moment.
Please don’t apologise for waffling. I think we all understand that feeling of being overwhelmed, especially after diagnosis. I know my emotions were all over the place at the beginning and I had so many questions and concerns. I wish I’d found this forum sooner so I’m glad you have!
I completely understand trying not to let others know how you are feeling so as not to worry them. However, that can take its toll so please use the forum and the helpline if you need it for support.
I know there will be others on here who can share there experiences and it’s great to have others that understand. Have you had the opportunity to ask your questions and share concerns with your medical team?
Please take good care of yourself and I look forward to hearing more from you
Hello @koifish - glad you have found this forum, it helps so much to have support and empathy doesn’t it. I am an Essential thrombocythemia (ET) patient diagnosed 19 years ago - but in my mid 40s! I did however first have bone marrow problems and “odd” blood counts when I was 18 and was under the hospital for some years - but it was the 1970s testing not so good ! - so it took many years to get an eventual diagnosis and treatment and certainly my earlier problems as a teenager had always been Myeloproliferative neoplasms (MPN) related. I say all that to reassure you that although it certainly isn’t easy getting a diagnosis especially at a young age, it is a benefit that testing now is so good that diagnosis can be made earlier in life so that it will help you going forward to be under that umbrella of being monitored and appropriate treatment to look after you and live life well.
But yes it’s important to touch base with others who are younger and dealing with the disease - in case you have not been put in touch with Myeloproliferative neoplasms (MPN) Voice the charity especially for us, do try them out as they feature a lot of helpful avenues particularly for younger patients - here’s a link that may be of interest to you
Some of my years of treatment I had interferon Pegasys injections - i believe there are a lot of different cold storage bags that can be used to take syringes when travelling - may be ask your pharmacy for suggestions
Hi, I am a 21 year old female. I just got diagnosed with Essential Thrombocythemia this year, a few months ago. It was shocking for me and very hard to digest as well for some time. It still is by the way, as someone who is already suffering because of PCOD (it’s a chronic disease), so learning I have this new chronic blood cancer…it was a huge setback for me. And a rare one at that. My platelets are almost stable at 700,000 right now. I discovered my cancer after i started having severe headaches for months. It just got worse as time went on. To get rid of the pain, i relied on this aspirin i had at home. It gave me at least 2 days of relief. It was horrible. I also started feeling dizzy alot. So we went to the hospital. Did all those tests; eye sight checkups, MRI, everything. Then a doctor advised me to see a haematologist. I got more tests done. JAK2 test came positive. Doctor told me to get a bone marrow biopsy done, which i still haven’t done yet. I guess because it’s something very serious and maybe because my parents aren’t ready for it. Maybe i am not, too.
Currently i am on Loprin (75mg). My headaches are muted now.
I also had this painful bump behind my neck when i used to get those severe headaches, but after taking Loprin, it disappeared. I never told the doctor that, i guess i didn’t think it was really concerning or related to the cancer at that time.
Knowing i have Essential thrombocythemia (ET) as a girl is even more stressful for me, because of the pregnancy issues i will face later on.
Hello there @koifish and @S.waqas, welcome to the forum fellow Myeloproliferative neoplasms (MPN) survivors! I’m so sorry to read of those diagnoses, but very glad you both found the forum (sorry for the doubling up, I’m a slow typer).
I see dear @Jilly20 and @Nichola75 have already welcomed you, and shared about living so well with Essential thrombocythemia (ET) wow for nearly 2 decades now?! It really helps to know others have been there and done that, as it were. Gives me hope we all have that chance to live long and prosper.
I wouldn’t like to offer any medical information, but perhaps you’d like to speak to the lovely specialist nurses on 0808 2080 888 who can direct you to, say, information about pregnancy whilst living with Essential thrombocythemia (ET). They’re around the forum too and offer great information (hey there @Heidi_BloodCancerUK et al!).
Hope that helps a bit. Do look around the forum as there are plenty of us living well with Myeloproliferative neoplasms (MPN) around, despite them being so rare. And do please keep us posted about you’re getting on.
I’m not yet used to discussing this in a focussed way, so it all comes out as garble at the moment.