Was diagnosed with Essential thrombocythemia (ET) 7 months ago and after a bone marrrow biopsy was rediagnosed with myelofibrosis secondary to Essential thrombocythemia (ET) CALR-positive that was in june . On watch and wait but my next appointment is the end of october seems a lot of waiting not much watching.ps fatique getting worse.
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Hi @tom , great that you have found us, welcome.
I understand that you are concerned but You will find quite a lot of us on here are on what they call ‘watch and wait’ or ‘active monitoring’ and some of us are on 3mthly checks, others 4 mthly or I am on 6 mthly checks, some people yearly.
If your fatigue is getting worse and you are worried please do contact your specialist nurse, if you have one, GP or consultant and tell them about your fatigue, it’s severity and impact on your life.
I attach Blood Cancer UK’s link on fatigue for you Blood cancer and fatigue | Blood Cancer UK
I always feel it is worth keeping my medical team aware of changes or new symptoms.
If you would like to speak to someone the Blood Cancer UK support line is there for you on 0808 2080 888
Please do let us know how you get on and look after yourself
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Hi Tom
Glad you are feeling better
I went down that same route. Initially diagnosed with Essential thrombocythemia (ET) then 2 months later Myelofibrosis after a biopsy. I was on watch and wait for 10 years. It’s only just changed recently for me. I had check ups every 4 months during those 10 years but now it’s every 6 weeks whilst they start me on Ruxolitinib which I have been taking for 3 days now due to my HB level being pretty low although I never felt tired.
It’s scary getting the diagnosis initially. I never ate for 2 months and lost 3 stone in weight with fear and worry but it settles down and you get to live your life again and put it to the back of your mind. Good luck with your journey. Loads on here to help and support you
Best wishes
Nicki
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Thanks Nicki that was very informative keep in touch i would like to see how you get on with Ruxolitinib good luck.
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Thanks Erica its good to hear from someone with so much experience because when you get diagnosed with something like this its very hard to find anybody else who has also been through it to talk to mixed, blessing i suppose.
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Hi @tom I remember feeling in a bubble, so, so isolated and the only person in the world in my situation, that is why I find our forum so supported. Take lots of care
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So I have been on Ruxolitinib for 3 weeks now and thankfully no side effects at all. Well maybe one, think it’s keeping me awake at night or I certainly haven’t slept as well since taking it. Has anyone else noticed this ?
So after two weeks I saw my consultant and my HB level had increased from 84 to 101 and my spleen reduced from 11cm protrusion to 7cm so he was really pleased with the initial response. I never noticed my dip in energy levels but have certainly noticed my increase in energy I can run back up the stairs now and not be out of breath. That was my only symptom previously a bit out of breath for a few seconds after going upstairs. Hope this continues and hope this helps anyone else starting their Ruxolitinib journey
Regards Nicki
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Thanks @Nicki535 and I am sure your experiences will help others.
We now live in a flat so I was thinking of you hot footing it up the stairs and not being out of breath, wow.
I often don’t realise gradual changes in my health until I start to feel better.
You seem to be doing well after 2 weeks.
Please do keep posting and take lots of care of yourself
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Thanks for the update hope you continue to improve and let us know how Ruxolitinib treatment goes .thanks tom
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