Hello all, posting for the first time as I am so confused!
I was diagnosed with Essential thrombocythemia (ET) in March 2023, JAK2+, and I requested a BMB in 2024 which confirmed Essential thrombocythemia (ET). Platelets started at 641 and now 764. I am 42 and currently on aspirin and have blood tests every 3-4 months. Symptoms are itching after shower, fatigue, heat intolerance, brain fog and bone pain. I am still working full time and I am an emergency worker doing shifts and I want to keep working full time but everyday is a slog. Work have been great to be fair and I no longer do full nights.
The reason why I am posting is down to feeling completely alone, confused and unheard.
Since being diagnosed Iāve had blood tests done and my concern is surrounding my Hct levels, RBC and hb. Nearly all bloods that I have had show hct being high, mainly 0.5. In Feb 2025 they went to 0.52. My RBC averages either high normal or just over with the last one in Feb being 5.78. My hb ranges between normal high, a lot of the time 165. Due to my bloods in Feb my Hemo actually wanted to see me face to face and I have a gut feeling my results and symptoms are more Polycythaemia vera (PV) than Essential thrombocythemia (ET) or a mixture of both if thatās possible?!
I went to see her and I was in there for less than 5 minutes. She thankfully ordered a venesection which I had this Thursday just gone but then said I wouldnāt have bloods for another 4 months! Is this normal? I asked her why so long and she said this was normal. I asked her if she suspected I had Polycythaemia vera (PV) and she said no and told me to drink more water. She didnāt even ask me how much water I was drinking!
I know my bloods are not as high as others and maybe I am overthinking this. I have always been a level headed person but since diagnosis and loosing my dad to prostrate cancer through this time my head is a mess. I have read that venesection can increase platelet levels so shouldnāt my bloods be monitored more closely?
Hi @Gabs a great big welcome and now you are no longer alone or unheard you are now part of our forum family and a rant about your thoughts and feelings is fine.
Before this forum I remember feeling so lonely, the same as you, because I certainly never met anyone with leukaemia.
I am certainly an overthinker and always negatively.
It must be so difficult having lost your dad to prostrate cancer too.
It sounds as if you have lots of questions, perhaps write them down with your fears and practicalities for your next appointment.
Something I wished I had done when I was working was talking and saying my needs to my employer more.
I hope others will share their experiences for you.
Please do let us know how you get on and really look after and be kind to yourself
Hi @Gabs
Iām new to the forum as well. Just joined an hour ago. Iām 41 and was diagnosed with Essential thrombocythemia (ET) and early stage myleofibrosis a few months ago. Iām like you, trying to understand details. But one thing thatās come to light for me over the past few months which is for me to control the controllable and then the story will play out in terms of your understanding, numbers, and the actual diagnosis with consultation and time.
The one thing I asked my specialist for was regular blood tests. My specialist is amazing and she has me in for bi weekly blood tests. She didnāt want my life burdened by checking in at the hospital every two weeks, but Iām cool with it so she is too. I also consulted with her recently about not proceeding with starting RO-PEG treatment because I feel ok, and my platelets are averaging 400 whcih is ok, and she agreed that itās my choice and I can hold and wait.
So call out what it is you need and want, and considering you seem so astute about details already this might be important for you so I hope you can make it happen.
By the way my wife is incredible and i would be lost without her. But itās the opposite with my family and extended family, so I completely get you with feeling alone.
I hope everything comes to light for you soon.
Take care
Jon
Hi @Jon-butler welcome to you as well.
Personally I have found it is not all about the numbers as we are all unique individuals.
Yes, I reckon always ask for what I want and then await the response and reasoning.
You also show so clearly how different people react to our diagnosis.
I could not explain to others what I did not understand myself.
What I do try (and it does not always work) is to live a day at a time or an hour at a time sometimes.
The main things are to look after yourselves and keep posting
I completely get what you mean. weāre all walking different paths with this, and sometimes even just getting through the day is enough. I think your point about not being able to explain what we donāt understand ourselves really hits with me. I just read a few articles on Myeloproliferative neoplasms (MPN) voice which landed with me, especially for this point.
I hope you keep sharing how youāre getting on, Iāll watch out for them.
Thank you both for your replies. Jon I am so pleased you have a great Hemo and I hope everything keeps going in the right direction for you.
I agree numbers are different for everyone, the reason why I am concerned about the numbers is due to the symptoms I have. I understand the importance of taking each day as it comes but the future is scary especially when I am doing a job I love and need to be physically fit for, annual fitness tests need to be passed. As I said work has been great, changes of shift patterns, restricted duties if needed when it is a bad day etc.
I always have questions, plan for the consultations I have, ask the questions and get very little response and come out of them feeling frustrated and not heard. I more than appreciate my Hemo has a lot sicker people than me to treat and Essential thrombocythemia (ET)/Polycythaemia vera (PV) on the bigger level is not as concerning, compared to some other blood cancers. I just want to get the right diagnosis and more importantly the right treatment and monitoring so that I donāt have those complications which could mean I cannot do my job anymore.
As someone recently diagnosed with Essential thrombocythemia (ET), I so recognise the confusion. You are definitely not on your own . I am reading and learning as much as I can to make sense of this condition. The consultant is very nice and personable but does not answer my questions fully and rather dismisses any possible side effects I report. Thank goodness for the blood cancer helpline, so helpful to speak with an informed nurse who is factual and understands the effect of this diagnosis. Trying to battle on when you feel as you do must be very hard but you are definitely not on your own!
Hi @ElizabethG a great big welcome.
A handy hint of mine that I have learnt over the years is to be āpleasantly assertiveā and it seems to work for me.
Donāt forget it is you that stands up and leaves the consulting room so perhaps donāt till you are happy.
You say you have the support line number so I wonāt give it to you again.
Please do keep reading and posting and really look after yourself.
Hello there @Gabs, welcome to the forum. Iām so sorry to read of your diagnosis and concerns about ongoing blood test results and feeling alone with all this, I can empathise.
My own diagnosis was around the same time as yours and funnily enough mine was sort of in between Essential thrombocythemia (ET) and Polycythaemia vera (PV) initially. After a bone marrow biopsy and closer inspection of my blood cells from their source it was decided a Polycythaemia vera (PV) diagnosis was closest. I have read about others on the forum being diagnosed with both, or an Myeloproliferative neoplasms (MPN) and another blood cancer like Chronic lymphocytic leukaemia (CLL).
We canāt really give medical advice or comment on test results around the forum as weāre not medically trained, but the lovely Blood Cancer UK nurses can be called on 0808 2080 888 for advice. Theyāre experts on what weāre living with and can advise on seeking second opinions and local support.
Perhaps this Blood Cancer UK information about Myeloproliferative neoplasms (MPN) might be helpful, itāll hopefully show how Essential thrombocythemia (ET) and Polycythaemia vera (PV) can be lived with well: What are myeloproliferative neoplasms (MPN)? | Blood Cancer UK
Personally, I have complete blood counts done monthly as that helps relieve anxiety about my blood cell numbers (and thus clotting risk) potentially worsening during longer gaps between testing. But if my haematocrit is close to 50 % in my monthly test results then I try not to worry as thatās about normal for most people without Myeloproliferative neoplasms (MPN).
Do have a look around the forum @Gabs as youāll find many of us living well with Myeloproliferative neoplasms (MPN). Youāll likely also find others commenting about double diagnoses, which I hope will help you feel less alone with these confusing disorders!
Hey there @Jon-butler, welcome! I see youāve already offered such great support to @Gabs and I just wanted to say how sorry I am that youāve also been diagnosed with Myeloproliferative neoplasms (MPN). Wow both Essential thrombocythemia (ET) and MF, thatās quite the double-whammy!
But seriously, I hope youāre bearing up okay. Like you I was classed as a āyoungā diagnosee and itās taken me quite some time to get my head around living with an Myeloproliferative neoplasms (MPN) for life. Something my lovely haematologist reminds me is that as weāre young thereās always plenty more time ahead in which to find cures for these chronic types of illness. Personally I feel like this diagnosis aged me by a few decades, but Iām still grateful to have life ahead!
Something you shared about family resonated with me as my own seem to struggle with my diagnosis more than me. Perhaps itās too morbid a topic for some peopleāus facing our potential demises so soon. I think many people donāt ever want to think about the big C and then here we are accidentally confronting them with it.
Myeloproliferative neoplasms (MPN) can often be described as āinvisibleā cancers, which can make me feel like an imposter and not really ill or actually living with cancerā¦ But those arenāt true and itās taking practice to āownā this horrible diagnosis and not minimise it like others can.
Anyway, on Iāve gone again! Iām glad you found us @Jon-butler. Do look around the forum as I know of other members that live with MF who share great information.
Hello there @ElizabethG, welcome to the forum. Youāve offered such great support already to others and I just wanted to offer you the same. I hope you come to find the forum as helpful as I have.
Just to add I also had a haematologist who didnāt really answer my queries and dismissed symptoms that were actually pretty disabling. Iām sorry you do too. Do remember itās your right to seek a second opinion and that PALS is there to support NHS patients with seeking appropriate care: What is PALS (Patient Advice and Liaison Service)? - NHS
I look forward to reading about how youāre doing @ElizabethG.
Hey there Jon! I too was diagnosed with Essential thrombocythemia (ET) (platelets tipped at 1693š¤Ŗ) and stage 1 fibrosis. I have a calr mutation. This was back in November of 24. And have been on 1000/1500 mg hydroxyurea+aspirin. Platelets are pretty much normal now at around 450. My concern is the fibrosis which hydroxyurea does nothing to combat. And the hydroxyurea has made my red counts so low Iām now experiencing macrocytosis. What are you taking and how is that working for you? Are you as concerned about the mf factor of your diagnosis as I am. Chatgpt has suggested pegasys would be a good option for me and I plan to discuss that with my doctors next week. I donāt like the idea that hair loss is a greater concern on pegasys than the hydroxyurea (which Iāve had some already). How are you doing on your meds? Thanks, Sue
Hi @Sueogle welcome to our forum.
Perhaps write down your fears, questions and practicalities for your next appointment.
I have noticed that we are all very individual people and we can all react in very different ways to different treatments.
The Blood Cancer UK support line is there for you on 0808 2080 888.
Please do look after yourself and be very kind to yourself and please do keep letting us know how you are
I am sort of in the same boat!!
My father was diagnosed at a late age with Polycythaemia vera (PV), and was never on treatment.
I was diagnosed with Essential thrombocythemia (ET) in 2012, having had high platelets since at least 2005, which had gone unremarked upon (except by me!). Unfortunately I had a breast cancer diagnosis at the same time, and when I went for that surgery my platelets were extremely high, over 1000.
Chemo for breast cancer brought the platelets down (as it does) to pretty much normal levels, but I had a few clotting episodes. Eventually the hematologist did a bone marrow test, as she wasnāt sure if I really had Essential thrombocythemia (ET) or not by then. Turned out positive to CAL-R mutation, which she assured me was less likely to cause clots. Despite that I suffered a third thromboembolic episode in 2020, and am now on anticoagulants long term.
My platelets hover just above or around normal max levels nowadays.
My Hb is consistently at or above normal max levels and so is my hematocrit and RBC, despite which, like your doctor, mine says itās not Polycythaemia vera (PV).
Itās possible Iām chronically dehydrated, but Iām like you, just not sure!!
Hello there @Rosywig, a slightly belated welcome to the forum to you. Iām so glad you found it here, and this thread in particular already has so many other Myeloproliferative neoplasms (MPN) survivors sharing great tips. Perhaps with your long experience of Essential thrombocythemia (ET) you will have much to share about your successes and tips for tolerating any issues.
Just wanted to say how sorry I am that youāve had to tolerate all those big C worries, and for so long. Wow so youāve already survived one type, and now you live with Essential thrombocythemia (ET).
Iām really impressed by your sunny-seeming attitude, although of course itās how we feel inside that matters. I live with Polycythaemia vera (PV), closely related to Essential thrombocythemia (ET) as you likely know, so Iām heartened by how youāre doing.
Although Iām not a doctor, Iāve read that those of us without the usual JAK2 gene mutation associated with Myeloproliferative neoplasms (MPN), like CAL-R, have slightly more variable responses to treatments. And like you say, dehydration can be an issue with Myeloproliferative neoplasms (MPN). I try to always have water with me these days.
Perhaps look around the forum to see how others with the CAL-R mutation are getting on.
Thanks for your welcome Duncan!
I think the breast cancer diagnosis was āthe big oneā, and Essential thrombocythemia (ET) went almost unremarked at the time.
I have quarterly blood tests, and monitored yearly by my hematologist.
I didnāt like to mention, as it seems greedy, but I also had invasive melanoma 3 summers ago, so that was also scary, but caught in time that taking a chunk out the back of my shoulder sorted it. So I see the dermatologist yearly as well.
I canāt really advise much on Essential thrombocythemia (ET). Blood tests this week showed ALL my counts within normal limits.
Iām not on any treatment. I do have some intermittent tingling in hands and feet, but that could be neuropathy from my chemo, or related to arthritis.
I just keep active as possible, and eat reasonably well. I paddle dragonboat and outrigger canoe, which I love. I tell people itās harder to hit a moving target, and just keep on keeping on.
Oh goodness, melanoma as well?! Not at all greedy to mention all of what youāve lived with as they can be related sometimesāI have to be more careful in the sun now as my Polycythaemia vera (PV) chemotherapy makes my skin photosensitive and more prone to skin cancers (and I live in a sunny place).
Iām really so sorry youāve experienced any of this at all @Rosywig! I donāt say this often but Iām really in awe of how youāve tolerated what youāve shared. While I imagine the operation you had for melanoma was not pleasant, nor those clots, Iām so glad theyāre behind you now. Itās great you have regular checkups for the Essential thrombocythemia (ET), long may they be simply monitoring.
Iāve also had some instances of my extremities feeling a little off, like sudden random shooting tingles. My haematologist wondered if it might be that as my blood is thinner now it can travel further in my veins. Neuropathy is meant to be a potential side effect of these Myeloproliferative neoplasms (MPN) so thatās another thing to watch out for, as you are.
Keeping active was the main thing I felt I could do after diagnosis and Iām glad I can as it absolutely helps. How cool that youāre a paddler! Iāve been getting into kayaking again and doesnāt it feel amazing to get out into the water?! Hiking too for me, although my body isnāt so keen on the heat it can cause so much these days. Moving target indeed!
Itās lovely to read a little more about you @Rosywig and I hope you keep sharing your optimism around the forum as itās catchingāin a good way!
