Bad news today. After 3 lots of chemo my hubby's primary cns lymphoma has not responded and is growing. Doctors are trying last attempt at chemo tonight. Am devastated - he is only 48, has only been ill since Easter and is my world. Can't cope with the thought I may have to face the rest of my life without him - we have been together for 30 years.
FormerMember
Hi jaynew
I have dionosed with a CNS lymphoma in late september last year its been a rough 6 months I'm weak down left hand side I have had 4 lots of intense chemo I still feel tired most of the time but feel much better than I did im so sorry about your husband I'm waiting for my next scan hopefully it will be very soon
Hi Chris - I hope you're feeling a lot better by now. Sorry I didn't reply sooner but I've only just seen your message. I should have really updated my blog as things have unbelievably taken a turn for the better since I wrote this. The "last ditch" attempt at chemo worked, he had a stem cell transplant in September last year and he has been in remission since December. His last scan was in April and it showed "no evidence of disease". It showed up some brain damage which probably won't get better but the main thing is he's alive and reasonably well. He gets tired very easily and he can't go back to work at his old job as a roofer as he won't regain the physical strength and balance he once had. He went into hospital on 4 April 2013 and finally got discharged the week before Christmas, so a 9 months stay altogether. His consultant is amazed at the results, has told him he really shouldn't be here and it's almost a miracle he is. What the future holds we don't know (who does?) so we are living day to day and not taking anything for granted. He's living proof however bleak things look there is always hope.
<p>I wanted to thank you for posting this blog; my dad has just been diagnosed with primary cns lymphoma - after going into hospital with a suspected mini stroke. Like your husband, my dad is reasonably young for this kind of tumour (53) and had an active job up until a month ago, but his condition has deteriorated quickly whilst he's been in hospital. He's often confused and has weakness on his left side that has left him unable to walk and care for himself. It's been a big shock to the whole family, and when discussing treatment options my dad had convinced himself that the oncologist had effectively handed him a death sentence and was unsure whether to go ahead with intensive chemo. </p>
<p>After lengthy discussions with us all, he's decided to go ahead and will be starting high dose methotrexate later this week. I know this is only the start of his journey, and that the next months are going to be at times harrowing and scary. Despite knowing that the chemo might not work & there may be permanent damage to his mobility caused already, this blog has given me hope that there are survivors of this disease.</p>
<p>I hope you and your husband continue to do well x </p>
<p>Don't seem to get notifications when people post to this blog so hello kitty and I hope things are looking better for your dad by now. Just over two years down the line since my hubby was diagnosed and he's still in remission. His mobility isn't great and he has quite a lot of brain damage but the upshot is he's still here and living a reasonable life. So don't ever give up hope, he is living proof this awful disease can be beaten. Please tell your dad that despite the odds he can beat this too and if he would like to speak to my hubby and compare notes please feel free to contact me </p>
