I have recently been diagnosed with Waldestrom. Never heard of it. I live in Portugal and within hours of going to doctors, sent to hospital and diagnosed within 3 hours. Admitted and treated with blood transfusions and now receive monthly mild chemo over 3 days. I do suffer terrible back pain which is a side effect of the disease. Does anyone else suffer this way?
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Hi @Caroleb1 welcome to our UK forum.
I do just have to say that diagnosis, medications and treatment regimes can be different in different countries.
Yes, when I was diagnosed with Chronic lymphocytic leukaemia (CLL) 20 yrs ago I had never heard of leukaemia in adults.
I am not surprised that you had never heard of Waldestrom.
I found it made me feel very isolated and lonely.
It sounds as if everything moved very quickly for you and it must have been difficult for you to get your head round it all.
I am sorry to hear about your back pain and I hope others will be able to share their experiences.
Can your medical team help you at all?
Be ever so kind to yourself and really look after yourself.
I don’t think i have come to terms with it still. I am lucky to have a wonderful supporting husband to help me through.
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Hi @Caroleb1 I am not surprised that you have not come to terms with your diagnosis, it took me ages.
I am sure that many of us, no matter what our diagnosis, have also felt the same.
I am so glad that you have a wonderful supporting husband to help you through.
Give yourself time and be ever so kind to yourselves and please do keep posting.