I was diagnosed with Hairy Cell Leukaemia in September 2024 and finished my treatment in late November 2024. Since then, I have had quarterly blood tests and my counts have shown a consistent upward trend up to late January 2026. However, soon after that I began to experience a lot of work related stress and anxiety in addition to having had a nasal infection which took 2 lots of antibiotics to treat. I’ve also had quite poor sleep now and again in recent weeks. Today I went for another blood test which, for the first time, showed that all my levels had decreased a little. I am now concerned. Is the drop due to my recent issues or is it the start of a relapse? Help.
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Hello there @Dave21, welcome to the forum. I’m sorry to read of your Hairy cell leukaemia ('HCL') diagnosis and related concerns. I am glad that treatment already finished a while ago though.
While I live with Polycythaemia vera ('PV') rather than Hairy cell leukaemia ('HCL'), I appreciate that even having blood testing can be a worrying reminder of other aspects of all this. I’ll add the Blood Cancer UK information about Hairy cell leukaemia ('HCL') here for reference.
We forum members can’t offer medical advice, especially as our test results are so unique to each of us, but I’ll draw attention to your queries to the lovely @BloodCancerUK_Nurses as they can answer them and offer specialist support. You can also call them free on 0808 2080 888 should you prefer.
Another way to perhaps compare your situation is to see what others living with Hairy cell leukaemia ('HCL') have said around the forum. If you use the search box at the top or Related Topics at the bottom you’ll find other posts relating to your search. There’s also a couple of recent-ish threads full of lovely folks discussing Hairy cell leukaemia ('HCL') that may be of interest, here and here.
Hope that helps a little @Dave21, do please look around the forum as you’re not alone with that diagnosis and worry of relapse, and I’m sure others can offer advice.
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Thank you for your response, Duncan. I’m generally pretty positive about it all but this has thrown me a little. I’ll follow your advice.
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Good stuff, it’s totally understandable for this to have thrown you. I look out for typical markers in my own blood tests, it’s great to keep aware I reckon as we can chart our own progress. We also get a front row seat to all the gory and worrisome details!
I’ll keep an eye out for how you get on.
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It’s a little ironic as I only went for a blood test today for a little peace of mind due to my recent anxiety issues and my subsequent worries that it could impact my Hairy cell leukaemia ('HCL') and it’s given me anything but. I suppose, though, that if my next test shows my levels back to where they have been then I’ll know that anxiety and infections could lead to temporary lower counts.
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Exactly. And yes ironic, but not funny when it causes anxiety, right?
It was an infection with raised blood cell numbers that drew my attention to other numbers being out of range and my eventual Polycythaemia vera ('PV') diagnosis. Not sure about anxiety increasing/decreasing our numbers though, perhaps if stress becomes chronic and starts affecting immunity? Really interesting, best to ask a specialist.
Sorry to read that you’re dealing with anxiety though @Dave21. I know it well. Sometimes I remind myself that anxiety is our body and mind’s way of letting us know of impending threats, and I’d say living with blood cancer can feel pretty threatening!
May I ask if you’ve got loved ones to talk this through with? There’s no need to be alone with your worries. Do consider talking to the lovely specialist Blood Cancer UK nurses, they can advise on the medical side of queries, about further support like counselling, just give them a call if you’d like. There’s no shame in looking after our mental health like we do our physical health, after all!
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I’ve got an amazing wife and two teen daughters so she knows my concerns. I’ve also done a lot of googling today although I’m not sure that’s a good thing. I do intend to call one of the support nurses tomorrow to have a bit of a chat. Thanks very much for your words and advice. I hope you’re well.
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Hi @Dave21
I was treated for Hairy Cell Leukaemia almost 9 years ago now, and I did relapse, which is quite common with this type. My relapse was caught on an annual test, 5 years after initial diagnosis. I was then treated again over the following 10 months or so. I had my 6 month check up yesterday and all signals normal.
I blogged about my experiences here : https://www.dmq-online.net/category/leukaemia/
Sooner caught the better, take care.
David
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Thanks for sharing your blog, David, and am glad things are going well for you. I’m hoping my lower counts are just a normal fluctuation rather than a relatively early relapse. My levels are still within normal range but reduced compared to my other results so we’ll see. The nurse didn’t seem overly concerned.
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