Hey Joe; welcome to the forum.

I noticed you hadn't had a reply yet so I just wanted to stop by to wish you good luck and let you know we're thinking of you.

Hopefully some members who have this diagnosis will be along for a chat soon but do feel free to use the 'search forum' option in the blue bar above to join in on any discussions you find about this as our community are very supportive and will do all that they can to help.

Kind regards,

Steph, Cancer Chat Moderator

Hello Joe, I hope that you’re doing well. I too was diagnosed with Anti RI paraneoplastic encephalitis secondary to breast cancer 2 years ago. I spent 3 long months in hospital and had Chemo and radiotherapy. I had to learn to walk again and needed loads of physio. I’m back at work now and running my life and family again. I feel older with more aches and pains due to medication side effects, but I am trying to stay healthy and positive. Life changed completely for me but we’re still standing! How are you doing? I hope your treatment plan has made a good difference to your life. I’ve never met anyone with this rare anti RI anti body. I’d love to hear from you and I really wish you well. Take care Joe and thanks for your post.

Hello Bels,

Thank you for taking the time to reply and share your story. I had quite forgotten the fact that I posted something on this site. it seems like a decade ago. I certainlly feel that I have physically aged a couple of decades. Like you, I underwent chemo and radiotherapy, unfortunately they were unsuccessful. At some point during my treatment the cancer spread from my nasal cavity and the lymph node in my throat on to my lungs. I was told on the 5th May 2020 that the original cancer was eradicated but the seccondary lung cancer is incurable. I am undergoing immunotherapy treatment to contain it and a CT scan in September confirmed that the spots on my lungs had shrunk as a consequence. I am permanently disabled due to the effects of the chemotherapy treatment and the ravages of the encephalitis, two bouts of pneumonia, one of sepsis and numerous stays in hospital taking industrial strentgh antibiotics to kill of infections. All that being said I am living comfortably at home with my family - I won't be able to go back to work - but I just started a year long History course with Dundee University. I am lucky to be alive. I was very close to death last July when those combination of diseases hit me. I was rushed to hospital and my wife was told it was touch and go if I'd make it through the night. I did make it, then they found the cancer and so began that adventure. My neurologist and my ENT consultant are trying to get a paper published because they reckon the combination of nasopharyngeal carcinoma producing the Ri antibody is unique. I fancied I was the one in seven billion but my oncologist disagrees :laugh: I am doing pretty well, if you saw me sitting in a cafe drinking a coffee you wouldn't think there was anything wrong with me except I could do with losing a stone or two and you'd maybe wonder, given I'm in my mid-fifties, if I dyed my hair black. I don't, funnily enough it got darker as my treatment progressed. I lost some of it but it grew back completely black with no grey in it. I get mental health support from a psycologist at the Maggies centre, a telephone chat every couple of weeks that really helped to get me through the first couple of months coming to terms with my situation and gives me a space to talk about anything at all that's bothering me without upsetting a family member or friend. I strongly recomend it. I'm pretty much at one with my situation and Dr Jenny played a big part in getting me here. The family and I are enjoying life as best we can in these strange times. I will keep on living until I am not living anymore, that's all we can do. Take care, all the best.

Joe x