New to the forun

Good afternoon to everyone out there

I've recently been diagnosed with myelofibrosis

Which I think is abbreviated to MF on the forum. I still have not got to grips with the various acronyms here

The news came as a big shock to me at the time. I had been suffering from anemia and always being tired. At present I am only having blood samples taken after the results of my BM biopsy were known

I am still suffering from fatigue, cannot walk too far before being out of breath. It is getting me down. I am becoming more intolerant and losing my sense of humour especially with my partner, Karen, who is extremely supportive.

Reading some of the posts I think I'm lucky in this respect

Thanks for taking the time to read this diatribe and looking forward to being more positive in future posts

14 Replies

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  • Hi and welcome Jimmy,

    I'm sorry you have been diagnosed with MF. You have come to the right place to learn all about your conditionand the abbreviations.

    We all support each othere where possibIe. Im sure your nearest and dearest will understand all the many emotions we go through as we progress through this terrible disease. I'm sure your sense of humour will return.

    myself i have ET and await results of BMB tomorrow.

    Best wishes lainy 🤗

  • Lainy

    Thanks for your reply

    Hope the BMB results are as good as you hope them to be

    Jimmy

  • Hi Jimmy, welcome to our club!! I'm also MF and was diagnosed 8 years ago. It's a lot to get your head around but once they've decided on the best course of action for you you'll be surprised at how well you'll cope. I had a slightly enlarged spleen and that was my only symptom for a long time. Couldn't believe I was ' so ill' as I was super fit. I'm on ruxolitnib and panobinistat at the moment as part of a clinical trial. Initially I needed lots of blood transfusions but went 6 months this time. Even though a lot of us have the same illness the treatments can vary any questions just ask we're all here for you. Once you get your head around things you'll get back on track. All the best to you and Karen you're very lucky to have such a supportive partner.

  • Hi - is this a recent trial? I am on Hydroxycarbamide and having really severe side effects - any information would be much appreciated. Rosemary

  • Hi Rosemary, I've been on the trial for 4 and 1/2 years. As far as I know it's a closed trial and I'm the only one on it in Ireland. Have you googled for trials to see what's available or spoken to your heam?? It's a minefield that's for sure and my drugs are no longer working. Am off to Dublin tomorrow To discuss treatment but am not holding out much hope as I badly need a drug to reduce the spleen. Still my haem is one of the best and I'll just have to wait and see. How long have u been on H as sometimes it can take the body a long time to adjust. I suffered really bad tummy probs and needed lots of blood transf it took years for both to settle down and for me to adjust. Sorry I couldn't be of much help but maybe someone else in the forum could assist. Good luck to you and any questions I'll do my best to help.

    Pat

  • Only been on it 9 weeks - but high dose - so maybe I'll just have to hang in for a bit longer! Thanks for your help. Rosemary

  • Can they reduce the dose for a while?? I don't tolerate drugs v well it could be you're the same. If your side affects are severe I'd give your haem a ring to see if he/she can advise. Quick phone call and you never know. Good luck.

    Pat

  • Hi Jimmy welcome to our exclusive club, only special people allowed on here. I too have MF diagnosed last October. I'm on watch and worry at the moment and going to see our special lady Professor Harrison at the end of the month for a second opinion (I know I've got it) I am getting symptoms and want to know the best things to do for them.

    You will get all the best answers and suggestions on here so stick with us. You might be rare but you're one of us.

    Janet x

  • I'm sorry to hear of your diagnosis - but you have come to the right place for support and information - we are all in this together!

    Rosemary

  • Hello Jimmy

    I too have MF - diagnosed in January this year - and so know how you are feeling - shocked and frightened about the future. Somehow these feelings subside after a time and it is a comfort to read about other people's experiences on this website and to realise you're not alone.

    Has your haematologist discussed any treatment options? My symptoms (I'm post-ET) were an enlarged spleen and weight loss. I'm now on ruxolitinib which has reduced my spleen so much that I can no longer feel it. But I've put on weight (big downside of rux!) so am now eating like a sparrow.

    I do hope you begin treatment soon and also hope you begin to feel better, physically as well as mentally. I'm sure you will.

    Best wishes

    Paula

  • Paula

    Thanks for your reply

    I too have an enlarged spleen but I was told 2 years ago that it was because I was a "big lad". All my test except the recent BMB were clear

    The only suggested action is a transfusion at this moment in time. My next hospital appointment is several weeks away when I might hear more. In the meantime I'll be on holiday in Greece where I intend to enjoy myself

    I am however grateful for all the support I've received on this site. Thanks to everyone

    Jim

  • Morning Jimmy

    Yes, I have MF too diagnosed nearly three years ago. I take Rux twice daily and on the whole don't do too badly. The fatigue is the biggest nuisance and like you, I used to walk miles and now hardly very far at all before needing to sit. I have tried to beat it but now realise that in my case I must just accept what I can't change in order to be happy. I am glad you have a good partner because it really helps - not easy for them to understand though.

    Wish you all the best and don't fret as there are enough of us who care for each other on this website.

    Linda

  • Hi Jimmy, welcome to our forum, you will soon learn all the different acronyms. It is a shock when you are first diagnosed, we all go through that, and it can take a while to come to terms with your diagnosis and the impact it will have on your daily life, and also the impact it will have on your family and friends. You can see that you will get lots of support from the lovely people on this forum, we all know and understand how you are feeling. I would urge you to read as much as you can on our website mpnvoice.org.uk, and I can also send you some of our information books, just email me at maz.cd@mpnvoice.org.uk with your postal address, you can also print them from the website. It might also help you to have a buddy to be in touch with, a buddy is someone who has the same MPN as you and takes the same medication and can offer help, support and advice from the perspective of someone who really does understand how you are feeling. Karen is obviously doing a brilliant job in supporting you and I am sure she understands you being intolerant etc, it's quite normal, but the more you read and understand about your MF the better you will start to feel. We are all here to help and support you. Best wishes, Maz

  • Hello Jimmy.Our son was diagnosed 10 years ago with PMF at the ae of 37 .He is now almost 48 and is very very lucky in that it is not really affecting him.At the moment he is only on Asprin.There are some really lovely people on here with MF with good advice.As Maz has said read the MPN website and avoid most sites on the internet which can give false information.He has a wonderful consultant , very much up on all MPD , dont forget there is lots of reasearch being done on these blood disorders . Take care Gill

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