He quickly diagnosed a blood disorder. When he saw the numerous red spots on my torso, he decided it was WM – subsequently confirmed by a bone marrow test. That was six or seven years ago, when I was in my early 70’s. Initially, I was on active monitoring (watch and wait) until my red blood count started falling. I was an early patient who was put onto Ibrutinib from the outset, not as a relapsed patient.
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My wife often remarks that my daily life continues as normal. That is not quite accurate – because I clearly have an impaired immune system. But, I still work, part time, and for at least ten years I have been going to my local gym and participating in exercise classes. Those hardly changed when I started on Ibrutinib. What I can do in the gym is now less energetic than 5 years ago: is that because of WM, an adverse “side effect” of the drug – or just the normal ageing process?
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More recently, I have experienced muscle pain first thing in the morning in my lower limbs – maybe arthritis? And there have been isolated examples of heart problems, such as atrial flutter. Perhaps, I do not know, they are long term side effects of the medication? I am having to adapt to these – but that is OK. I am grateful for what modern medicine can offer.
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Not all of you, sadly, will share my good experience to date – though I sincerely hope that you do. Early on, I was encouraged to stay positive and I pretty much have. “Tomorrow could be a better day” is a good mantra. Is exercise (any exercise, not just in the gym) beneficial for lymphoma sufferers? I think so. Exercise benefits not just my physical body – but also (more importantly) my mental state.
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My two haematolgists (the first retired) have been magnificent. Their explanations of WM have been clear. My (sometimes silly) questions have been answered clearly and with patience. I early on attended a WM conference in Oxford and met others with WM – which was hugely beneficial. I hope your journey with WM is as good as mine.
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