Late effects/long term remission

Hi, I am 8 years in remission from non hodgkin lymphoma. I had 3 different lines of chemo with immunotherapy, a stem cell transplant, and radiotherapy. I seemed to have been doing fine for 6 years, but now I've started to experience late effects. In particular peripheral neuropathy and autonomic neuropathy, I have dizzy/faint spells often and tingling in my hands and feet. My joints aren't doing too well either, I get stiffness and intense pain my arms, legs and hips every single day. It feels frustrating as I'm only 32 years old, was 24 when I went through cancer. I'm wondering if this is common, something to be expected? Any long term survivors here experiencing late effects? It's so hard not to worry about the future, how I will continue working, if it will affect me looking after my two kids, and if any of this will get worse as I get older.

  • Hello jennilou92

    I'm sorry to hear that, after such a long time, you've recently developed some late-onset problems from all the treatment that you went through. It sounds like it's been a difficult time and I can understand that you're concerned about how these side effects may impact you in the future. 

    Have you spoken with your GP or been referred to talk with a specialist about your problems? If not then I'd really encourage you to reach out to those health professionals that you have contact with to try and seek some support and advice on how you can manage the problems and alleviate some of the symptoms you've mentioned. 

    We do have a little bit of information on our website about coping with nerve changes but I'd suggest maybe giving our nurses a call to chat things through with them as well. I know they will be happy to listen and offer any advice, information and support they can. They're available Monday to Friday 9am to 5pm on 0808 800 4040. 

    I hope that you can access the support you need to improve things jennilou92. Keep in touch and let us know how you get on. 

    Best wishes, 
    Jenn
    Cancer Chat moderator