Hi everyone, can I ask all essential thrombocythemia diagnosis guys, how long have you all been diagnosed? And at what age? I’m getting a bit spooked as I saw on Myeloproliferative neoplasms (MPN) connect page that normal life expectancy is 20 years?
I’m only 42 and possibly have had Essential thrombocythemia (ET) the past 5 years as that’s when the whole investigation of high platelets and symptoms have started.
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Hello there @Melmc, it sounds like you’ve been diagnosed with Essential thrombocythemia (ET) and have concerns. These concerns are understandable! I was diagnosed with another Myeloproliferative neoplasms (MPN) last year, Polycythaemia vera (PV), which is closely related to Essential thrombocythemia (ET), and am considered a young survivor so I can empathise with some of what you’ve shared.
I see from your earlier posts that you’ve had concerns about your blood cell numbers for years, so I applaud you for persevering with seeking answers. Well done getting referred to haematologists to make sure. Looking back over my own CBC test results from before my diagnosis I see that my platelets varied each time, going up and down. Now they’re usually in the normal range.
I hadn’t heard of Myeloproliferative neoplasms (MPN) Connect and it looks like it’s owned by an American pharmaceutical company called Incyte. I’d be wary of reading information about such a delicate subject sponsored by a company that makes medicines for these sorts of blood cancers. You might find more accurate, less biased information about ET and MPNs here on Blood Cancer UK.
While research about MPNs such as ours often states that we have a prognosis of surviving 20 years, this is usually based on folks who are diagnosed later in life, usually 60+ in age. I attended a blood cancer conference earlier this year where a global Myeloproliferative neoplasms (MPN) specialist explained how these prognoses are based on older patients surviving with MPNs into normal old age. Most folks are diagnosed with MPNs in their 60s and so living for another 20 years means they have a nice long normal length of life. You may find some of my notes from the conference interesting in this thread.
Recently I changed haematologist and my new one happened to train with the conference specialist! My new haematologist confirmed that I am more likely to die with Polycythaemia vera (PV) than from it as treatments are so successful these days. I found this very reassuring, although of course I’d rather not have to live with a chronic and rare form of blood cancer at all. I’m sure you can empathise!
Do keep posting, @Melmc! I’m glad you found the forum.
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Hi @Melmc I certainly cannot better @Duncan’s response to you.
All I can say and I might have said it before that I have another blood cancer and when I was diagnosed I saw a life expectancy of 5-10 yrs, That was 20 yrs ago.
I can really understand your anxiety but, and I know it is really difficult, just try and live in the day.
We are here for you whenever you need us and so is the Blood Cancer UK support line on 0808 2080 888.
Be kind to yourself
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Thank you both so much for replying, I have been doing so well since diagnosis, just focusing on getting myself fit so keeping busy, after reading that through me a bit. I’m much more settled now thank god.
I will look into that tread you link Duncan thank you so much
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You are most welcome, @Melmc! Please ask about anything that comes up for you, I’m sure there are folks on the forum who will know what you’re experiencing and have relevant advice.
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Good evening @Melmc, and everyone else, I hope you are all keeping as well as possible.
I was diagnosed with Essential thrombocythemia (ET) a little over 6 years ago, following my first (so far!) heart attack some 6 months earlier. At one of my early follow up appointments, accompanied by daughter No3, she of the blunt and direct speech, (don’t know where she gets that from) she answered the consultants question of “does any one have any questions?” with “yes, how long is he going to live?”. After a slight pause the consultant answered “10 to 15 years with your comorbidity”.
As others have indicated already, the science and treatments are evolving all of the time so I take the answer I was given with a large pinch of salt, but please don’t tell my Cardiologist!
Any other questions just simply ask.
Take care, stay safe, be kind to yourself and keep on smiling.
Jimbo165
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Thank you Jimbo165 for replying, I hope your well. Yeah think I got a shock when I read the life expectancy, but reassuring chatting with yourselves, would i be ring in asking my hematologist about treatment other that aspirin? (I’m seeing him on Thursday? I feel is it better to be on active treat to reduce my growing platelet levels as away of prevention of further progression? I feel just aspirin with platelets still rising I’m just a sitting duck for it to progress or symptoms to get worse?
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Oh yes make a big list and take it all to your haematologist! This is their specialism and part of their treatment is explaining how to tolerate all this holistically, as in it’s not only about medicines but how you and your mental health respond to it all. Stress can worsen symptoms so try to find ways to lower anxiety.
It may be that your blood cell numbers show that for now you only need aspirin to help thin your blood to decrease the chance of any blood clot events. You may be considered low risk for clotting and may not need any medicine like hydroxyurea. You may never need it! Others here are treated with other medicines like interferon. Many of us have phlebotomy which removes blood and thus lowers your platelets.
Hard as it to believe but aspirin is considered treatment as it works so well at stopping clots. I had a heart attack many years ago and have taken daily aspirin since with no ill side effects, in case that’s a concern for you.
A difficult fact about these blood cancers is that they can progress (AKA “transform”) into other types, all of their own accord, and it’s nothing to do with anything you have/haven’t done right/wrong. Unfortunately, gene mutations can occur regardless of our best efforts.
Make sure to take along a list of any query and symptom, no matter how insignificant they may seem, as your haematologist should know which relate to your diagnosis.
Let us know how it goes!
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Hey, just wanted to inform yous of my appointment, I was over today and no further forward, his words are I meet 3 of the 4 main criteria for Essential thrombocythemia (ET) the one I don’t meet is the jak2. Bone marrow looks very much like Essential thrombocythemia (ET) hes reluctant to have it on my records (because I’m 42). He’s now sending off my marrow sample to a specialist in London so another wait game and still in limbo. I don’t know how he can say you platelets are rising , have symptoms and bone more looks like a classic Essential thrombocythemia (ET) case. All very upsetting really. I just need clarity so I can move on.
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Hi @Melmc I have been thinking about your post a lot and very naturally I can understand your need for clarity and you are still in limbo.
Put me right but I have a thought (not a medical response) Your medic isn’t saying that you won’t get an answer/diagnosis, what he is saying is he will await your bone marrow sample result coming back and getting more clarity before putting anything on your medical records as you are only 42yrs.
If he was to put anything on your records at this stage it would mean you will have to disclose it on future forms of insurance, if asked, and their might be other implications.
Please excuse me if you feel I am completely wrong.
Please do let us know how you get on and look after yourself
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That’s what it seems, he kept saying he’s reluctant, he said I meet 3 out of the 4 major criteria, the only one I’m not meeting is the jak2 positive.
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Good afternoon all, hope everyone is keeping as well as possible.
Just an update following yesterdays appointment at LRI. First surprise of the day was that my appointment was with a Clinical Pharmacist, accompanied by a trainee Clinical Pharmacist. I felt that the appointment went very well and was very well listened too. And according to my Daughter No4 (my chaperone!) was was one of the longest appointment times with the Clinicians ever!
Further tests and investigations will be discussed with the senior Haematologist, and then options will be put to me.
Overall my blood results were “poor but generally stable and not a cause for concern”, which I’m taking as a positive for now. As always there was an added “but”! My liver function, always an independent spirit, has spiked in an upwardly direction to approximately twice the upper limit of the normal range, but will only be monitored for now. However, if it is still being unhelpful at my next blood tests then my Pegasys regime will be altered to “give my liver a rest”. This has been done in the past when my ALT results have been over 3 times the upper limit but the impact of the adjusted Pegasys jabs is a marked increase in my platelet count which causes a mild panic within the Haematology team! Such is the life of an Essential thrombocythemia (ET) dweller.
My symptoms are still mostly the same: extreme and unremitting fatigue, aches and pains in all sorts of zones, frequent and absurdly easy bruising, occasional bleeding from my gums, and a very poor appetite, although I did “pig out” on a delicious carvery with my “chaperone” and her partner yesterday! But no cake this time!!
Interestingly I am now being seen every 2 months rather than every 3 months as has been the case in previous years. Whilst the additional monitoring is a comfort in some ways, I do wonder if the increase is because I am getting worse/not responding to treatment as hoped, or is it for my sparkling company and witty conversation? Only others can decide that one.
As always, please take care, stay safe, be kind to yourselves and keep on smiling.
Jimbo165
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Hi @Jimbo165 yes a bit like a Curate’s egg, but at least you felt listened to and it was comprehensive.
I’ll take that and yes, stay safe and keep smiling and posting
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Good evening @Erica, as they say “every day is a school day” and I’d never heard the phrase “a Curate’s egg” but am now a more rounded individual as I’ve just looked up its meaning. To be honest I feel more like Humpty Dumpty moments after the effects gravity took over! 
I genuinely did feel listened too and that makes a heck of a difference to ones mental and emotional mood.
Wilco.
Jimbo165
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Jimbo165 It’s good to hear that you felt listened to. It is good to hear that you will be given options hopefully they can offer you something to reduce your symptoms. Glad you got to enjoy a carvery.
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Good afternoon @Liz59, and everyone else. Thank you for your kind words.
It is amazing just how much discomfort that we can get used to, or at least mask to some degree, so that family, friends and colleagues don’t see how much we are suffering.
Take care, stay safe and be kind to yourself.
Jimbo165
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Hey there @Melmc, apologies for not responding sooner. I’m also sorry to read that your symptoms point towards Essential thrombocythemia (ET). I had a sort of in between diagnosis at first as my blood cell analysis and bone marrow biopsy showed aspects of both Essential thrombocythemia (ET) and Polycythaemia vera (PV) and there were notes mentioning “masked Polycythaemia vera (PV)” but my haematologists settled on Polycythaemia vera (PV) being a closer match.
More specific to you though is that not all of us with MPNs have the JAK2 mutation, although more than 95 % do. That’s why a JAK2 gene mutation can be so indicative of MPNs. There are dozens of other gene mutations found in those of us with these blood cancers and they need to be sure before adding it to your record, like @Erica says.
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Good afternoon @Erica and everyone else, I hope you are all keeping well, or as well as can be, and enjoying the (finally!!) better weather that we have now, although give it a few more days of this “heatwave” and we shall all be complaining that it’s too hot!
Apologies for the “comms blackout”, I’ve been going through what feels like a particularly rough spell of late which, sadly, I suspect will be on going for a while yet. My fatigue levels have been getting worse and various other ailments seem to be making their unwelcome presence even more noticeable. Thankfully my back seems to be more willing to cooperate with my instructions although my feet are still playing up.
Following on from my previous visit to see the Consultant back in April, and at her suggestion I visited my Dentist to see if there was any obvious cause of my excess bleeding gums. Fortunately there is no evidence of such, although my Dentist is now £450+ better off and I have two new shiny white fillings!
I was back at LRI last Friday and managed to see the same Consultant Pharmacist in the Haematology Department as at my previous appointment. My blood results are still all over the place, with my liver function, always a free-moving spirit, now having reduced considerably to only “poor” status now, but my platelet count has risen sharply - again. For now I am staying on my fortnightly Pegasys jabs but if things haven’t improved in 8 weeks then I may be changed on to a different treatment regime.
Apologies for the long vent, but sometimes things get on top of us, as we all know.
Take care everyone, stay safe, be kind to yourselves and remember to keep on smiling.
Jimbo165
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Oh @Jimbo165 you must be all over the place and perhaps under a mound of notes.
Perhaps things seem to just get all too much.
A long vent definitely helps me and I do not feel so alone, you have your forum family around you.
I have also just gone through the same after a myriad of appointments, although I had already just had my 6 mthly dental check.
However for the first time ever 2 ‘ologists’ have checked whether my dental hygiene has been recently checked.
I am sending you a mutual Garfield smile of my Pearly Whites.
Just take it steady.
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Thank you, as always Dear @Erica, for your kind and wise words.
Yes, life has felt much more of a struggle of recent times, but I have struck lucky this week as I have the entire week off of work. Makes a change to have nice weather when I am not working. Having said that, I am working through my garden, clearing out the flower “erm - weed” beds, to be replaced by some nice Limestone chippings. I planned on doing no more than a couple of hours each day but, like all battle plans, it didn’t survive first contact with the enemy! I managed to do 5 hours today but have stopped for now.
I had my Shingles jab at the start of this month, after re-jigging my Pegasys jab, but still had them within two days of each other, which wiped my out the next day. Unfortunately the next day Daughter No4 (hereafter known as DN4) had tickets to take me to the Duxford Airshow but I was unable to manage more than 4 hours there, much to my annoyance. Thankfully DN4 understood my issue on the day.
Life goes on, 24 hours at a time, except for two days per year when the clocks go wobbly!
Thank you for being there.
Jimbo165
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