I was diagnosed in November, Jak2 positive, and told that it was likely Essential Thrombocythaemia. I started on hydroxycarbamide straight away as my platelets were over 900. They’re now in the 500s, which is good, but haematocrit, red blood cell distribution width and reticulocytes have shot up! So now I’m booked in for a bone marrow biopsy and ultrasound scan, as the haematologist is considering that it might actually be Polycythaemia Vera. The ultrasound is on Tuesday and the BMB is scheduled for 25th Feb, so it will be a while before I have any answers. It’s a bit of a whirlwind TBH.
What I’m trying to get my head around is this: if it is Polycythaemia vera (PV), then has it progressed from Essential thrombocythemia (ET)? And in such a short period of time? or was it Polycythaemia vera (PV) all along despite the platelets being so high at the beginning and other values being OK? All these questions are not helping with the anxiety of suddenly having to deal with such a new thing anyway. I know I’ll get the answers when I get the results of the tests, but the waiting is the so nerve-wracking.
The haematologist said that if it does turn out to be Polycythaemia vera (PV), then she will consider changing my meds to Ruxolitinib, as I’m not tolerating the hydroxy too well, excessive fatigue and “tummy troubles”.
Gosh @Irene_Louise Perhaps it is not surprising that your thoughts and emotions, and of course your anxiety, are all over the place.
You realise unfortunately it is a waiting and not knowing anxious making time.
It will be an opportunity for you to write your fears, questions and practicalities.
Have you got a specialist nurse or medical team you can ask questions of?
Perhaps, and I know this in not easy, try and take it a stage or day ar a time and try and do things to divert your mind, I believe in fresh air and appropriate exercise, music and Pilates
I will copy the Blood Cancer UK details on mind and emotions
Blood cancer: mind and emotions | Blood Cancer UK
The Blood Cancer UK support line is also there for you on 0808 2080 888
Please do keep posting how you are doing.
Be very kind to yourself and look after yourself
Hello again @Irene_Louise, I’m so glad to read that your platelets have come down so well. That would be a relief for me. My haematologist told me that our platelet counts can go up and down with these Myeloproliferative neoplasms (MPN), especially after starting treatments, but they usually settle down after a few months.
Interesting that you were diagnosed first with Essential thrombocythemia (ET) but that it might be Polycythaemia vera (PV). Apparently my diagnosis was a close call between Essential thrombocythemia (ET) and Polycythaemia vera (PV) as I had high white blood cells and platelets, but the bone marrow biopsy showed a Polycythaemia vera (PV) diagnosis matched better. It might be the case for you too, like you suspect. I’m guessing the ultrasound is to check if your spleen is enlarged, which I’ve been told can be common with Myeloproliferative neoplasms (MPN) too.
Essential thrombocythemia (ET) can progress to Polycythaemia vera (PV) like you say. I attended a conference last year and the Myeloproliferative neoplasms (MPN) specialist said (checking my notes) that Essential thrombocythemia (ET) can transform into Polycythaemia vera (PV) first before transforming again to Myelofibrosis (MF), but that this is pretty rare. I’d hold hope that you had Polycythaemia vera (PV) all along. I get the impression from what I’ve asked of haematologists that Essential thrombocythemia (ET) and Polycythaemia vera (PV) really can be pretty similar on a cellular level, but very personal to each of us in how they present. It’s great that it’s being checked thoroughly with a BMB, I’d say.
I empathise with your anxiety though. Being diagnosed with one of these is stressful enough, but then for the diagnosis to maybe change is a lot. Maybe try to remind yourself that the diagnosis may change but treatments are likely to stay the same. These Myeloproliferative neoplasms (MPN) are a close-knit family of disorders!
For what it’s worth, to treat Polycythaemia vera (PV) I have daily aspirin to thin my blood, daily hydroxyurea to disrupt the overproduction of blood cells, and occasional phlebotomy when my haematocrit gets above 45 %. It took my body about 3 months to get used to the hydroxyurea and for my fatigue to settle down. I’m sorry to read you’re having tummy troubles, it’s pretty common with hydroxyurea I’ve read. Perhaps your specialists could prescribe something to help your tummy, I know anti-nausea medicines are regularly offered.
Hope this helps, even a little @Irene_Louise! Please know you’re not alone with these diagnoses, nor having a diagnosis change. I’ve read of other forum members whose diagnoses changed or have double-diagnoses of Essential thrombocythemia (ET) and Polycythaemia vera (PV). I think functionally our treatments are pretty similar. But these Myeloproliferative neoplasms (MPN) do tend to keep us on our toes!
Thanks for your reply, Erica. I do have a CNS, but by the time I got home yesterday it was already too late in the day to phone her. In the meantime, I have self-referred to NHS Talking Therapies, and I’ve got a telephone assessment next week. So I’m really hoping that this will help with my mental well-being.
That is brilliant @Irene_Louise you have taken that first step which is the hardest, I really found talking therapy helped me,
Thanks, Duncan, that’s very reassuring, that it has also happened to other people, having a diagnosis change; I was beginning to think… well I don’t know what I was thinking! I didn’t even know there could be such a thing as a double-diagnosis.
My haematocrit was 46% 2 weeks ago and 48% this week, but the doctor said she didn’t want to rush into phlebotomy until she got the BMB results back! I do have faith in her though, I’m sure she knows what’s best for me.
You’re most welcome @Irene_Louise, I’m glad to offer reassurance. I’m so sorry you’re going through it. Remember that anxiety is a natural process our bodies go through to keep us aware of potential dangers—what could feel more dangerous than living with a blood cancer?!
Know what you mean about thinking all sorts, these are confusing conditions to get our heads around and of course we’ll fill in gaps by thinking the worst. I hope it comes to be a bit easier and less anxiety-provoking. Maybe once the BMB result comes back it’ll clarify what you’re living with. If it’s any comfort I also have therapy and find it very helpful, especially since diagnosis. I believe Macmillan offers (free) therapy: Free counselling for people with cancer | Macmillan Cancer Support
I’d say those haematocrit levels are great! When mine are below 50 % then I know not to worry as that’s in the normal range for folks without Myeloproliferative neoplasms (MPN). Good enough for me! As for phlebotomy, if you’ve donated blood then you’ll know what to expect. I quite enjoy it when I need to go in for phlebotomy as I get to chat with the lovely specialist nurses and ask them questions, and their answers are often less guarded than those of the haematologists.
Do please keep us posted about how you get on @Irene_Louise, I’ll be looking out for any updates.