Waldenstroms lethargy and weight loss

No problem, its unusual to see any posts from those with Waldenstroms. I only really knew dad and he passed in Nov 2021. He was diagnosed at 60 and was 88 when he passed so had a good life. I’ll keep in touch about my medication as apparently there can be long term issues, but not always.

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Dear @soph094
We wanted to check and see how things were with your Mum? It must be so challenging for you in wanting to respect her wishes whilst at the same time ensuring she is safe. You are quite right in persisting with her to get a medical review as these symptoms could be reversible with input from the Medical and Nursing teams.
As my colleague @TanyaBloodCancerUK mentioned please do call us if you need to talk things through, we would be happy to help: Blood cancer information and support by phone and email | Blood Cancer UK
Kind regards


Hi @soph094 I had I very stubborn ( lovely ) mum when it came to doctors or any medical problems. Although she didn’t have your Mums diagnosis it was hard work! We ended up once having a family intervention with her and reluctantly she gave in. Her blood pressure was so high she was definitely heading for a massive stroke
Have you any family support that could help you out? All the weight seems to be on your shoulders at present. I truly hope you get peace of mind as it’s so difficult :smiling_face_with_three_hearts:


Interesting post that makes me wonder about communication amongst so called expert consultants.
I was diagnosed age 54 with stage 4 WM in 2020. Again, told it was very unusual for females of my age. Also, my dad suffered from same condition. We are under same consultant, who has an appalling bedside manner! He too said WM not hereditary.
One might question their research?!

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Sometimes it takes a forum like this to make those connections @MSullivan.
Thanks so much for posting and look after yourself

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Hi @soph094 I just wondered how you are both doing?
I also wondered how your mum’s blood tests went on the 17th Jan and any other appointments she might have had?
Look after yourselves