hello has anyone progressed from et to mf and what were the physical symptoms, i have fatigue and slightly enlarged spleen Thank you.
Hello @glynis. I was diagnosed many years ago with a myeloproliferative neoplasm (MPN) that had features of ET (Essential Thrombocythaemia) and MF (myelofibrosis.) For a long time my bone marrow was overactive and I had a high platelet count. I took Hydroxycarbamide to reduce the high platelets. Then gradually I noticed that my platelet count was dropping and my red blood cell numbers were also dropping. In conjunction with this I started to become anaemic with a low haemoglobin (Hb) level. Eventually I stopped the Hydroxycarbamide as it was no longer needed. However, the low red blood cells and Hb became more of a problem, together with my spleen enlarging and increased bone pain. I take Ruxolitinib which helps with some of the symptoms and another drug, Danazol, to try to boost my red blood cell count. Unfortunately the only way of dealing with the anaemia is to receive blood transfusions which in turn creates other problems such as high iron. Sorry this is such a long-winded reply but I hope it helps to answer your question. Please bear in mind that my diagnosis was almost thirty years ago when I was in my thirties so this transformation from ET to MF has happened over many years. I now have no features of ET as the disease has transformed to MF. I send you my warm wishes. Willow X
oh thank you for your reply,much appreciated i think i am progressing to mf but not diagnosed as yet,i did google it but was very wooried about what it said, i have since been advised not to google it but instead stick to sites like this one.Thank you again for your input.
I was a sucker for Google for a couple of years. I agree with you, sticking to reputable websites such as this has all the information you need, and if it doesn’t, the helpline is only a phone call away X
Yes agree,thank you, no more googling,
Hi @glynis I hope you will be able to talk to someone who knows you medically soon and can answer your fears and questions.
Glad you have stopped Dr Googling, there is so much scary information on there, isn’t there.
A handy hint I have found is to write down everything I want answers to and I have learnt to ask follow up questions and also ask for clarification of I do not understand something.
I hope people can help you more.
The main thing you can do now is to look after and be kind to yourself.
Please do let us know how you get on.
Thank you for replying, i see my consultant thursday and yes i will write down what i want to ask him .Thanks again.
Hope it all went ok @glynis
oh thank you ,yes my bloods are stable just slight anaemia,having a repeat bmb to monitor my progress.and this site has helped as well very informative, thanks again,appreciated
Hi @glynis, glad that your bloods are stable please let us know how you bmb goes and it is natural to be anxious beforehand and during and do let you your medical team know how you are feeling.
Look after yourself and please keep posting.
Thank you i will keep posting
Thanks for the update @glynis. I’m glad things are going in the right direction. Keep us posted on how you are x
Thank you i will do .
Hi @glynis I have been thinking about you, how are you doing now?
Look after yourself
Hello ,i am booked in for a bone marrow biopsy to see how i am progressing so will know more after that.no real symptoms apart from fatigue. Thank you for your concern much appreciated.
Hi @Glynis I have been thinking of you and just wondered if you have had your bone marrow biopsy yet?
Look after yourself
Hello im having my biopsy tomorrow,so will know more when i get the results.Thank you .
Well ive got the resuts of my bmb and i have low intermediate mf ,just aspirin at the moment and see if any symptoms develop,or if my bloods get any worse.bit confused to tell the truth not sure of my prognosis.
Hi @glynis I will copy this to the Blood Cancer UK nurse advisors @BloodCancerUK_Nurses in case they can help.
It sounds as if you will have regular tests which can be called watch and wait or active monitoring.
Look after yourself
ok Thank you .im a bit confused at the moment about mf ,so will do more research and hopefully i will understand it more.The prognosis is uncertain but thankfully there are treatments available. Thanks for your reply.