@willow @Jimbo165 Thanks for explaining how to tag people. I also work In the automotive industry with various chemicals but guess I will never know like many what caused It, could be a faulty gene like others have said. Hope you recover from your chest Infection @Jimbo165 and get better soon
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Hi @RA2000 @Erica @Jimbo165 @Willow
Iām sure the doctors are right that itās a faulty gene but mine seemed to follow on from Covid and a lot of people have said the same. In a way it doesnāt really matter- we have it and we just have to accept it- whatever caused it!
It took about 6 months of being on pegasys before I stopped feeling quite so tired so it does seem to take a while.
Iām sure you will come to terms with it all but it sounds like youāre doing really well already.
Take care everyone and enjoy the rest of Xmas
Gillyj
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Hi @Gillyj I guess something must trigger the gene to become faulty if it isnāt something we are born with. Maybe it was the Covid that was the trigger? Interestingly my mother was diagnosed with Essential thrombocythemia (ET) not long after my father died suddenly and I wonder if it was the shock that triggered it? I was under a lot of stress before my blood cancer diagnosis and it makes me wonder if that was a contributory factor. Gene mutations applicable to Myeloproliferative neoplasms (MPN)ās werenāt really known about when I was diagnosed. We will probably never know the cause but it doesnāt stop us wondering! Warm wishes to all. Willow x
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Hi @Willow @Erica @RA2000 @Chrispy and everyone else, hope you are all keeping well. Yes, it is a bit of a āposerā as to what causes the gene to mutate but, as @Gillyj has alluded to, we are all where we are, whether we planned on coming down this track or not. In my own case, my own āunplannedā journey began with my heart attack, also unplanned if not entirely unexpected as my Dad had 9 over a 5 month period, culminating in his cardiac arrest. He, like myself, was not very good at taking hints and carried on for several more years, enduring a quadruple by-pass in the early 1980ās, a huge undertaking in those days, followed by a stroke in the mid 1980ās. He soldiered on for a few more years, passing away in 1993. I have been the only male in my family, on my Dadās side for 9 years now.
The consultants at LRI have stated before to me that the Essential thrombocythemia (ET) was in all probability a āmajor contributory factorā to my own heart attack, but canāt explain the cause of the mutation that led to the Essential thrombocythemia (ET). All I do know is that my heart attack quite probably saved my life as without the advance warning (something a little gentler would have been nicer!) Iād most likely have keeled over with a cardiac arrest of my own. Who knows?
Anyway, enough ādoom and gloomā from me, there appears to be enough of that outside of the windows.
As always everyone, take care, stay safe, be kind to yourselves and keep on smiling.
Best wishes,
Jimbo165
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Good evening @Chrispy @Duncan @Erica @Gillyj @Heidi-J-BloodCancerUK @Leigh65 @RA2000 @Willow and everyone else on this thread and any other threads too.
I just wanted to wish you all a very Happy, Healthy and potentially Prosperous New Year with the hope that 2026 will be kinder to all of us, in all ways, especially healthwise.
You have all been a wonderful source of comfort and kindness, knowledge and wisdom to me and to others throughout 2025 and I thank you all from the bottom of (what is left of it!) my heart!
As always, take care, stay safe, keep on smiling and be kind to yourselves.
Best wishes,
Jimbo165.
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Thank you @Jimbo165 for your new year greetings and kind words. I echo everything you have said and am so grateful for this forum and how we can all be connected and support one another. Itās so important to feel understood and to have a place to share. Every good wish to you @Jimbo165 as we start 2026. Warm wishes Willow x
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Happy new year everyone wish you all the best for the new year
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Happy new year to you all @Jimbo165 @RA2000 @Willow @Duncan @Erica - and I echo everything @Jimbo165 said- he as usual summed it up so well 
Another year behind us and on with 2026- letās hope it is kind to us all.
@Chrispy how are you doing? Iāve been thinking of you
Take care everyone
Gillyj
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Aww happy new year everyone from California, youāve had a head start as ever! Howās it looking over there in the future?!
I agree @Jimbo165, letās hope for a peaceful and healthy 2026 
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Oh @Jimbo165 @Gillyj @Willow @Duncan @RA2000 @Leigh65 @Chrispy and all I just wanted to wish you all, near and far, a very healthy, happy, peaceful 2026 and everything that you wish for yourself.Thank you so much for your support and friendship during the past year.
I think my New Years Resolution is to take care, stay safe, keep on smiling and be kind to myself and to do less housework. OK @Willow I know that my aim last year was to do less housework. I will try harder this year!!
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Hope everyone Is well. Can this condition definitely not be passed on? I got diagnosed back In June with essential thrombocythemia and had my first child that month as well a son obviously a bitter sweet month for me, Itās obviously a worry and something I need to ask my consultant the next time I see him, been even thinking of getting my son checked for It. Iām probably worrying over nothing. I have found this forum helpful and some comfort so I again wish everyone on here a happy new year and hopefully a healthy one for all
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Hello there @RA2000, congratulations on having your first child. What a lot youāve had going on with that and the Essential thrombocythemia (ET) diagnosis, Iām impressed!
While I live with Polycythaemia vera (PV) rather than Essential thrombocythemia (ET), Iām sure you know theyāre related types of Myeloproliferative neoplasms (MPN). I have a close relative diagnosed with Essential thrombocythemia (ET) and I asked my recently trained haematologist about hereditary links. I was told the gene mutations that cause our blood disorders are not passed on from parents, but rather the mutations can develop over time and are usually triggered during childhood and typically present symptoms later, if at all.
So that might explain why my relative and I developed Myeloproliferative neoplasms (MPN) growing up around presumably the same carcinogens. Whether that was family smoking cigarettes around us or local carcinogens Iāll never know, according to my haematologist. He also told me that if there are any clusters of Myeloproliferative neoplasms (MPN) diagnoses like ours in any places then itās likely due to those diagnosed people growing up around environmental carcinogens rather than being hereditary.
I hope that helps a little @RA2000. I wonder what your own haematologist might say?
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@Duncan Thanks for congratualation me on first child and yeh a very bitter sweet time, I next see my consultant on January 19th so will be asking a few questions, mind I donāt really feel like I get much support off my consultant, for instance I have complained to him about my fatigue for months and he kept dismissing my claims the fatigue was down to the essential thrombocythemia as In his words Iām only 37 so shouldnāt be feeling like that, after months of complaining to him he finally gave In and started me on a trial of pegasys injections a couple of weeks ago to see If It helps with the fatigue. I have looked on other social media channels with people with the condition and similar age to mine and they are as well complaining of fatigue so canāt really understand my consultant dismissing me. How are you and your close relative getting on?
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I can imagine it does feel bittersweet, having your child arrive at a similar time to such a shocking diagnosis for you. I remember feeling dazed after my diagnosis, and then angry like I was grieving my pre-cancerous self. A couple of years later Iām feeling more at peace with living with Polycythaemia vera (Polycythaemia vera (PV)), so I hope itāll come to be more like just background noise for you too @RA2000.
A couple of points I wanted to share that might be of interest. Fatigue is absolutely caused by and worsened by these Myeloproliferative neoplasms (Myeloproliferative neoplasms (MPN)) and their treatments. My first haematologist tried telling me I was experiencing fatigue due to becoming ādeconditionedā from lack of exercise, and I had to point out that I hadnāt stopped hiking etc and in fact was more active as Iād taken up yoga for times when I was too fatigued to get outside. When I think back, my fatigue was disabling and began right when I started taking hydroxyurea.
Fatigue is so common for people with Myeloproliferative neoplasms (Myeloproliferative neoplasms (MPN)) and other blood disorders that there is an acronym (CRF, cancer-related fatigue) and lots of research showing at least 80 % of us will unfortunately experience it. Definitely not in our minds!
Research I read about increasing energy levels and offsetting the fatigue stated that keeping as active as you feel comfortable, stuff like walking/hiking/swimming, and slow exercise including yoga, tai chi, and qigong are all clinically proven to help improve energy.
Something my newer haematologist tells me which I find very reassuring is that we are likely to live into normal old age with these Myeloproliferative neoplasms (MPN). He tells me Iām more likely to die with Polycythaemia vera (PV) rather than from it, hence why I feel more at ease with it all now.
One last point but perhaps stick to official blood cancer research organisations as thereās a lot of very inaccurate, generalised information about Myeloproliferative neoplasms (MPN) online. I googled my prognosis early on and it was so wrong, telling me I had 5 years! That could have really worried me if Iād not already checked.
Anyway, hope that helps relieve a little worry for you @RA2000! Donāt hesitate to ask whatever you need to around the forum, weāre lucky to have so many lovely survivors of Myeloproliferative neoplasms (MPN) here.
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@Duncan thank you that post was really detailed and helpful. I was also told that I would most likely die with the condition than from It by my consultant, the main worry I have Is Iām Jak2 positive so was told theirās a small chance It could turn Into Leukemia, I think theirās about 5 percent chance of It happening . I guess the fatigue Is just part of the course with the Myeloproliferative neoplasms (Myeloproliferative neoplasms (MPN)) hasnāt helped with having a newborn either, will try exercising more and keep active to see If It helps. Itās a strange one for me I would never of knowing I had essential thrombocythemia If It wasnāt for the fatigue It all just came on suddenly one day and I had to go to bed for naps during the day which Isnāt like me so I booked an appointment with my GP expecting them to say I had low iron levels but my white blood platelets were elevated and I got transferred to haematology for tests was a shock when I was diagnosed like It will be for anyone. I get blurry vision and pins and needles and upper leg pain occasionally as well but the fatigue Is the worst for me. Iām glad I joined this forum as speaking to you and all the other helpful members has been reassuring.
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Oh youāre most welcome, Iām happy to have helped. So glad you were told similar about these Myeloproliferative neoplasms (MPN) not being our causes of deathāwe just need to hear about one more specialist saying the same and itās a pattern!
Similar to you Iāve heard about Polycythaemia vera (PV) and Essential thrombocythemia (ET) having a small chance of progressing/transforming, I was told either Acute myeloid leukaemia (AML) or slightly more likely is Myelofibrosis (MF). My haematologist reassured me that this is still very rare but that there are many successful treatments available for either potential. He also said to be careful in the sun by using high SPF lotions, especially if we take chemotherapy like hydroxyurea.
In fact, there are many folks around the forum who live with Acute myeloid leukaemia (AML) or MF and they offer such great wisdom about how it is for them that I know I could get my head around that too, if need be. These types of Myeloproliferative neoplasms (MPN) often have the JAK2 gene mutation, although there are apparently dozens of mutations linked to blood cancers. Itās a lot to take in!
Let us know how you get on with that fatigue and the pins and needles. Make sure to keep note of any symptoms, even things that seem minor, as youāll begin to note what they might be caused by or activities that worsen/improve them. Also, itās good to let our specialists know as they might know easy ways to stop them happening, and thereāll be a record of any symptoms should they progress. Nurse @Heidi_BloodCancerUK recently shared these great Myeloproliferative neoplasms (MPN) symptom trackers that may be of interest: https://uk.mpn.your-symptom-questionnaire.com There is even an app for this now: saniushealth.com/mpn
With some adaptations I do think these Myeloproliferative neoplasms (MPN) can be tolerable in the long-term. I hope you get back some energy @RA2000, but try to give yourself break as itās early days and your body is still getting used to the medicine and maybe even the shock of it all. Glad you found us!
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I have had constant upper leg pain since yesterday Iāve had pains before but It usually goes away pretty fast but this feels different, do I need to call my GP or anything because a quick search on Google and Itās coming up with blood clots etc, whatās peopleās thoughts? Thanks
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Hey there @RA2000, we canāt really offer medical advice, but if I was experiencing what you describe Iād go to hospital. Perhaps you might like to call 111 first: When to use NHS 111 online or call 111 - NHS
Let us know how you get on!
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Hi all. Am new to the forum and just wanted to say hello and how comforting it is to have found such a friendly and helpful group of people. I do not have the cancer many of you mention, and must admit I had not even heard of it. I lived in blissful ignorance, as I suppose most of us do until forced down a different path! I was diagnosed in September with a particular cancer of the lymphatic system, with that changed to another diagnosis in October after a lymph node biopsy whilst receiving tests and chemotherapy as an inpatient at Guyās for 8 days. Diagnosis now Angioimmunoblastic T-cell Lymphoma. The conversations around shock, emotions and fatigue certainly resonate! But am half way through chemand the routine is helpful for now. Today I am attending a 2 hour face to face course with the charity Look Good Feel Better, covering moisturising and how to paint in your eyebrows amongst other stuff. 2 months ago I could not have faced people in a room or even joined a forum like this. So just shows how we adapt!
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Hello there @Chloe, I just wanted to welcome you to the forum and to thank you for your lovely optimistic post. Iām so sorry to read about your diagnosis, or should I say diagnoses! That canāt have been easy to be told one diagnosis and for it to change.
Have to admit that I was unsure where to direct you for supportive information about your specific diagnosis as itās new to me. Have you tried searching the forum using key terms from your diagnosis, Iām sure there are forum members who share aspects with you.
However, hereās the MacMillan information about AITL: Angioimmunoblastic T-cell lymphoma | Macmillan Cancer Support
And hereās the Blood Cancer UK information about non-Hodgkin Lymphoma: Non-Hodgkin lymphoma - what is it, symptoms and treatment | Blood Cancer UK
And funnily enough, learning how to moisturise has become important to me too as my skin gets so dried out from my treatments. It can be these day-to-day tricks that help me feel like Iām managing better with it all, I hope it comes to feel similar for you too @Chloe.
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