I was diagnosed with Hairy Cell Leukaemia and underwent chemotherapy treatment in November 2024. It’s been 3 months since treatment, and I’ve had some tough days. Has anyone else experienced something similar? Sharing your experience would be greatly appreciated.
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Oh @Jag I wish you had found us sooner., a great big welcome.
It can be an isolating time when you are having tough days.
Don’t forget that you and your body have been through a lot medically, emotionally, psychologically and practically.
I hope others can share their experiences.
The Blood Cancer UK support line is also there for you on 0808 2080 888.
I look forward to hearing more about you.
Be very kind and really look after yourself
Good evening!
Thank you for sharing your story. For a rare disease with a relatively “kind” treatment and a good prognosis post treatment, I think that the medical profession consequently plays down Hairy Cell Leukaemia.
I was diagnosed in Nov 2023, I had chemo in Jan 2024 - delayed by doctors strikes and the Christmas period. During this time, I had multiple “mystery viruses” which made me feel dreadful. I thought chemo would be the end of it but as a consequence had a severe drug reaction to allopurinol which put me on steroids for nearly a year!
I have just had my first annual follow-up. Remission is confirmed and although my CD4 count is not yet back to where it should be (cladribine I’m told…) I feel better than ever!
Keep the faith - you will get there. In the meantime, be good to yourself while your bone marrow recovers and your immunity gets back to where it should be. Plan some trips, go places - your life will be better!
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Thank you so much for your support.
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Obtaining travel insurance can pose a significant challenge for individuals with pre-existing conditions such as cancer. Any guidance or recommendations that can be offered would be immensely appreciated.
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Hi @Jag I attach the Blood Cancer UK details on Travel and travel insurance
Blood cancer and travel: your guide | Blood Cancer UK
Take lots of care
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Much of what you said, Jag, resonated with me. Yes, there are bad days, but (in my experience) things will get better. Try to live with hope! I was diagnosed with Hairy cell leukaemia (HCL) in 2012, and had an ‘unpleasant’ reaction to Allopurinol, to the extent that I was used as a visual teaching aid by my consultant. I had chemo in 2012 and 2018, and am currently in remission, so my health is generally stable, although I await appointments to check how things are.
For travel insurance, ‘InsureWith’ have been excellent. They are the only insurers that we have found who know about Hairy cell leukaemia (HCL), and their policies are less expensive than expected.
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