I was digagnosed with Polycthemia Veria in 1999 when I was 38. For most of this time I was treated with Hydroxicabomide and was able to live a normal life.
Last year I suffered a significant weight loss, fatigue, weakness amongst other symptoms. I have a slim build so the weight loss was alarming. I went to see my GP who said he would speak to my heamotology consultant. My GP also diagnosed diabetes but did not think that the weight loss was due to diabetes.
I had a telephone consultation with my consultant who when I explained the problem he asken me to go and see him for a physical examination. After this, a CT scan and a bone marrow biopsy, a diagnosis of Myleofibrosis was confirmed.
My consultant recommended I join a clinical trial and referred me to another consultant at a larger hospital. After another examination and various tests it was confirmed that I could join the Fedora trial. This comprises Fedratinib and injections of Ropeginterferon every 2 weeks. I have been on treatment for just over 3 months.
It is still early days, my fatigue has reduced, my spleen is slightly smaller and my weight slightly reduced.
This has caused me some stress but I am relieved to be having treatment.
I was due to retire in 2025 but have decided to bring this forward to this year due to my diagnosis.
As an aside I was told I was in intermediate risk group 2 and was not eligible to receive Ruxolitinib due to the NICE guidelines.
@clickinhistory
I have now expanded my post to give full details.
I no longer have Polycythaemia vera (PV), the Mylefibrosis has taken over from it. When I did have it the medication worked for me and I was able to live a normal life. I didn’t do anything different. Perhaps I was lucky. I did have the same consultant for most of the time.
The Mylefibrosis diagnosis and symptoms has been a big shock.
Hi i have been diagnosed with myelofibrosis since 2021 and am on fedratinib as ruxolitinib only worked for a year or so…i have epo injections every week and must say i think i do well …i have lower back pain sometimes and have learnt to rest till it goes …im sure you will be fine on fedratinib it is a good drug and your consultant will help with any side effects you may have …
Hi @Jonpd a great big welcome to posting on our forum.
You have had a lot going on over the last year and I find shock takes a long while to come to terms with.
Also weight loss is scary and so visual.
I also found that retirement took some getting used to.
If you would like to talk to someone the Blood Cancer UK support line is there for you on 0808 2080 888
Perhaps just be very kind to yourself and please do keep posting as I look forward to hearing more about you.
Hi Jonpd I just wanted to send you good wishes. That must have been a shock getting a new diagnosis with new symptoms. I am only started on my poIycythemia journey. I hope your treatment works well for you . Wishing you a happy retirement.
Hi I have had Myelofibrosis since 2011 but I suspect maybe I have had it longer. It was just found out after a random blood test for something else. I had no symptoms other than an enlarged spleen 21cm until mid summer last year when I came more anaemic so my consultant recommended Ruxolitinib. So I lead a normal life until then for 11 years. No tiredness and no weight loss. I still feel fine and normal despite the Ruxolitinib making me more anaemic and I’m having to have transfusions every 3-4 weeks to bring me up to an acceptable level until hopefully the medication settles down. I’m intermediate risk 2 due to the anaemia as of 2023 as well hence I’m eligible for Ruxolitinib.
It was a huge shock when I was first diagnosed. Google told me I may only live 5 years so I freaked out. I’m hoping I’m around for quite a few more years. Good luck with your journey. It’s difficult to try and not think about it but hopefully you will settle down and it doesn’t interfere with your life too much.
Best wishes
Nicki
Hello @Suzyq
I am still getting used to Ruxolitinib been on it just over 3 months now. But it has made me more anaemic so am having 3-4 weekly transfusions. I haven’t heard of the injections you have. What do those help with ?
Best wishes
Nicki
Hi @Nicki535 you might have done so but perhaps it is always worth checking with your medical teams about going away on holiday missing any treatments or medications.
Look after yourself
Yes of course I would do just wondered how flexible the injections were as I think everyone wants to try and live as normal a life as possible for as long as they can x
