So after having negative CALR,MPL JAK2 and BCR ABL Test but still having chronic thrombocytosis I have been diagnosed with Tripe negative ET
they say this is slow growing and can often be asymptomatic for many years but my platelets were first high In 2004 and are still high from yesterday lowest 474 and highest 624 so not seriously high but high.
Has anyone had similar and it has developed into a more serious condition with age they say ET is rare with only 1 in every 100,000 getting it and usually over 50 but I do suffered with weakness, fatigue, bone pain and feeling lightheaded. I don’t smoke, or drink and am not overweight more under weight at the minute since December 2021.
Would love any advice.
Hi @Vickys01 thanks for your question, which I am sorry that I cannot help with, I hope others can.
I also don’t smoke, or drink and am not overweight, more under weight, and at 72 yrs old I am the fittest that I have ever been, but I still have Chronic lymphocytic leukaemia (CLL) and I have been on watch and wait for 18 yrs since diagnosis and manage the symptoms I was diagnosed with.
I will copy your post to Blood Cancer UK’s nurse advisors @GemmaBloodCancerUK @LauranBloodCancerUK and @Heidi_BloodCancerUK
The main thing is that you look after yourself and I hope others can help you more.
@Erica Thank you Erica as I am only 38 the haematologist said I was only young to get this.
Hope you are keeping well xx
Hello Vickys01 welcome to the forum here and I am sure you will find support and help, as yes a diagnosis can be a strange time as you get your head around a condition and all that goes with. I also have ET triple negative - I was diagnosed in my mid 40s, I am now 61. The tests you mention having for CARL, MPL and Jak2 are all standard tests for a possible ET diagnosis as they are various mutations that can cause it - when they are not present however the triple negative diagnosis of ET comes along - it’s often thought that’s because just now the mutation we have got has just not been discovered yet! (When I was diagnosed only Jak2 was tested for , MPL and CALR have been discovered in those years). Do take a look at the MPN Voice website (the UK charity for MPNs) as they have a lot of helpful information and also run a forum along with a buddy system. ET is a chronic blood cancer and people live with it for a normal lifespan, albeit with treatments often coming into play at some point which are to keep the platelet counts lower - it’s a very individual thing as to when and no doubt your consultant will keep a check on you, regular blood tests help see what pattern is normal for you as to how often the counts are above normal range. The symptoms you mention are very usual ET ones - do keep letting your consultant know what you are experiencing as that can help too for when treatment may be considered. It’s good to have a haematology consultant who is specialised or experienced in MPNs so a good thing to check out - as MPNs are rarer to have a consultant with experience of the condition and it’s treatments makes a big difference. Do keep coming here and letting us know how you are getting on.
Just as a PS as to your age - many these days are diagnosed at your age and much younger - at one time when testing was not so good it did tend to be when people were a lot older and invariably it was come across as a subsequent to something else and so tended to be thought “an older persons” condition - when I was diagnosed 16 years ago my very experienced consultant said for years it was people over 70 now he said it’s people like you in their 40s and 50s because our testing is so much better - now in 2022 people are being diagnosed with ET in their teens, 20s and like you 30s - it’s a good thing as you are being looked after and watched out for from a young age preventing problems of a condition that is actually there but unknown. I first had bone marrow problems very ill in the 1970s when I was 17 - no one looked for ET or MPN and on my much later diagnosis in my 40s it was clear I had lived with it since my teens , much better to be diagnosed and get help from a young age. All the best
Hi @Vickys01. I can already see that lots of forum members have already shared their experiences and I hope that’s helped. Those symptoms must be exhausting. I hope you are taking care of yourself. Does anything help with the symptoms?
@Jilly20 thank you for your message this has really helped!
You’re spot on about diagnosis being so much better. I was diagnosed in my early 30s in the 1980s, but from awful pregnancy problems in my mid 20s it became clear later I had it the and most likely from other problems in my late teens it was already lurking. Early dignosis nowadays is a gamechanger for future health.
Yes, @Juliet diagnosis, kinder treatments, research and trials have come on in leaps and bounds.
It must have been really tough for you.
Look after yourself