Hairy cell leukemia

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My husband has been treated with chemotherapy cladribine drug in October.it is now February and he is feeling all of his symptoms coming back.could it be the chemo side effects or the cancer cells have not gone.im feeling less positive now as I listen to him tell me all his symptoms again .he is due a bone marrow again to retest.anyone else gone through similar? 

  • Hi  and a warm welcome to this corner of the Community although I am always sorry to see folks joining us and sorry to hear about your husband's diagnosis. I am Mike and I help out around our various Blood Cancer groups.

    I don’t have Hairy Cell Leukemia (HCL) but I was diagnosed way back in 1999 at 43 with a rare, incurable but treatable type of Low Grade NHL eventually reaching Stage 4a in late 2013 so although my Blood Cancer ‘type’ is different I do appreciate the challenges of this journey rather well.

    We do actually have a dedicated group covering CLL, SLL, HCL this is because these types of blood cancers, although have the word Leukaemia in them, in Heamatology terms, actually comes under the umbrella of Low-grade non-Hodgkin lymphoma - yes very confusing I hear you say.

    Do join the group and put up a post but the group is not very busy but there may be someone lurking in the background who will reply.

    As for him feeling all of his symptoms coming back and could it be the chemo side effects or the cancer cells……. the main people to answer this question would be his clinical team, when was his last appointment?……. has he called his concerns into his clinical team?

    From my long experience the effects of treatment can last a significant amount of time……. but like my type of NHL, his HCL can not be cured so treatments are used to control his condition and the hope is to put it to sleep for a period of time….

    Over my first 16 years the longest remission I had was about 9 months with the shortest being a few months…… but I am now over 8 years out from my last treatment, I turned 68 back in November and I am still in remission living a great life…… so it can be done…… but sometimes it’s all about getting the right treatment done.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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  • Thank you so much Highlander. Yes the consultant is aware of his symptoms returning but they don't know until they re test his bone marrow. We will try to stay positive though x

  • Hi again  ……. oh it’s been a long day today……. indeed, why are they doing another BMB if it was not to tests for a relapse….. sorry for that.

    Over my many years helping out on here but also on the Lymphoma Action  Support Platforms I have talked with a good number of friends las who have HCL who had the same journey as your husband but years down the line they are doing good - let’s look for answers soon.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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