Primary Myelofibrosis

I was diagnosed with Primary Myelofibrosis in late 2019. Since then we have just been monitoring my bloods. My red blood cell count is now down to around 90 and the plan is to start treatment. I would welcome the opportunity to discuss experiences of others that have been or are going through this. I am male age 68.

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Hi @davidmynors, a great big welcome and I am glad that you have found us.
I have chronic lymphocytic leukaemia (CLL) and I have been on active monitoring (watch and wait for 17 yrs. I am a 71yr old very lucky girl.
What I have found on our forum and support and realising no matter what our diagnosis or treatment is we often share the same fears thoughts and feeling. I still get anxious before medical appointments. I also find it helps to write down everything I want to ask before appointments because my mind goes blank when I walk in the room. My question list might include my fears, thoughts and feelings, practicalities.
Please let us know how things are for you and if you would like to talk you can contact the Support Services Team on 0808 2080 888 (10am-7pm Monday-Friday, and 10am-1pm Saturday and Sunday) or via email at support@bloodcancer.org.uk.
Take care and stay safe.

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Thanks for this. There is the possibility that I will go on some sort of trial based in Oxford. Everything seems to be how long is a bit of string. One cannot help but think about survival times/life expectancy and this is just so unclear. You end up just fearing the worse and that is where I am at the moment.

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Hi @davidmynors I came home and re-wrote my will and organised my funeral and all the music and it is natural for our fears to come to the fore at times like these.
The waiting and not knowing are the worst, I think it is a bit like a bereavement all the losses of the certainties you thought you had hit you.
We are here for you, you are not alone.

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Hello @davidmynors. Welcome to this forum. I am glad you have found us. I was diagnosed with a myeloproliferative neoplasm which had features of myelofibrosis and Essential Thrombocythaemia (ET) in 1992 when I was in my thirties. At the time of diagnosis I had an extremely high platelet count and was on medication for many years to reduce the number of platelets. In recent years my disease has transformed to 100% myelofibrosis and I no longer have features of ET or a high platelet count. You mention that your red blood cell count is 90 but I wonder if you mean your haemoglobin level is 90? I have become increasingly anaemic with a low haemoglobin level and have regular transfusions of red blood cells. I take Danazol and Ruxolitinib tablets twice daily. The Danazol helps to boost my red blood cell numbers and the Ruxolitinib has helped reduce my enlarged spleen and eased some of my other symptoms. Obviously I have done well to have lived with this disease for 28 years now. Hope this encourages you. I will be more than happy to answer any other questions you may have. Thinking of you and sending warm wishes. Willow

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Hi. I can remember my platelets used to be all over the place and I used to get gout in my late 30s. I think I was probably ill then but it was just not diagnosed. Yes I think I am talking about haemoglobin. How low does it have to get before you need transfusions? I am still walking quite a lot and do not feel too weary. I must admit I struggle on hills. Must confess I don’t break into a run!!

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Hi @davidmynors. It is interesting that you think you had symptoms quite a few years ago but hadn’t been diagnosed. My haematologist doesn’t like to give me a transfusion of red blood cells until my Hb goes below 80. Even then, it depends how symptomatic I am, eg, my fatigue level or if I am becoming increasingly short of breath. I have learnt to recognise the symptoms when I am starting to need more red blood cells. The problem is that every unit of blood cells that I receive increases my ferritin (iron) level which can be dangerous if it gets very high, so it is always a fine balance trying to decide how often to transfuse me with more red blood cells. I do find that I get more out of breath than I used to. I wish you well. It is good that you are still exercising as much as you can. Take care. Warm wishes. Willow

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Sorry @davidmynors. I meant to say that my haematologist waits until my Hb goes below 90 and not 80 - typing error! As I said my symptoms are taken into account in conjunction with my Hb level. Take care. Warm wishes. Willow

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Hi @davidmynors
We do hope you’ve been doing okay since your last post? @Erica says, coping with the unknown and uncertainty can be incredibly difficult to live with. And it’s so good that you’ve found our forum and have reached out.

And like @Willow says, keeping active can do so much for a person, both physically and mentally, so it’s great to hear you’ve been able to do this. Hope this has helped you?

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I am one of the lucky ones as I have a very supportive wife. Obviously it is hard for her but between us we are coping quite well. I think we are all agreed that the uncertainty is the hardest part. Probably human nature to assume and fear the worst!

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