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.
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 email@example.com.
Take care and stay safe.
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.
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.
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
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!!
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
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
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?
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!
As mentioned I am now waiting to start treatment for my primary myelofibrosis. My 1st appointment in this respect is 2 months away!! I would welcome the opportunity to speak with someone that has primary myelofibrosis and has commenced treatment or even just anyone one with this cancer.
Hi @davidmynors lets hope there is someone on the forum that can help with your request, but we are all here to support you and if you would like to talk to someone 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 firstname.lastname@example.org.
Please let us know how you are feeling in the meantime, I expect 2 months seems a long way off currently.
@davidmynors I was diagnosed 11 yrs ago with primary MF was on watch and wait until late 2019 was on Rux for 4 yrs to reduce size of spleen. At 51 had BMT in February 20 at UCL and now over a year since. Not easy but you can get through it. Happy to provide any information that might help you on your journey
I am 68. When I have mentioned BMT to my specialist it has just been discounted as too risky. I guess that might be an age thing? I guess Rux is probably the next step for me and there is also the possibility of a trial. How did you get on with Rux? My haemoglobin is now around 90 and I must confess I feel okayish and do not get too knackered! I have lost a few stone in the last year but not sure if this is just lack of beer during lockdown or the cancer. I guess this is still quite rare and I am just lacking any meaningful information. Did you have to have any transfusions?
Hi @Thornman a great big welcome to our forum and you have just shown what I get most from our forum, information and support and that feeling of not being alone.
I look forward to hearing more from you.
@davidmynors I can’t help with specific stuff about your condition but feel free to offload on here as we’ve mostly all got complicated medical conditions and no one in our immediate circle that has been through the same. I’m afraid I had the opposite to you and put on weight during lockdown as I seem to eat more chocolate these days!
@davidmynors. Rux was fine helped reduce my spleen size to a point. I was similar and haemoglobin levels were 85-90 range for a while and I had a pretty normal life working exercise etc. It was decision to watch and wait or BMT I decided to have BMT re transfusions I had a number after transplant and platelets and when out of hospital weekly then fortnightly two units with no issues No transfusion since July 20. Everyone is different I would just say whatever path you decide to take stay as postive as you can.
Thornman - Thanks very much for this. This is the most detailed information I have received from any source! There is just so little information available.
Really glad you found @Thornman’s comment useful! How are you getting on?
I’ve put some links below of some of our webpages you might find useful -
MPNs booklet (Myelofibrosis info pages 49-67)
Please do feel free to give us a call on 0808 2080 888 if you want to talk anything through at any point!