Hi Susannah,

Welcome to Cancer Chat, I was diagnosed with FNHL early in 2007 had RCVP and relapsed in 2012 had RCHOP with maintenance and am currently waiting for a biopsy this coming Friday as I seem to have relapsed yet again. Not sure where we go from here. Mine was stage 3 grade 2 10 1/2 years ago. How are you coping with the maintenance? I found I ran out of steam a bit towards the end. Please keep in touch and let me know how you are doing.

thinking of you, Christine.

Hi Christine, 

Thank you for your prompt reply. This disease is very unpredictable and whilst we know it's incurable we hope for longer remissions. Sorry you've had such a short remission this time especially after going through 2 years of maintenance. I got 6 years with RCHOP and that was without maintenance so was quite lucky I suppose. Maintenance wasn't funded in my health authority(Notts) in 2009. Have had 5 Rituximab maintenance up until now following RBENDA for my relapse last year. I'm finding each one a little harder - more fatigue and achy stiff joints. The most worrying problem is my neutropenia which isn't recovering and I need regular GCSF injections. Did you have problems with low immunity while on maintenance? I've been told it's risk versus benefit and if I get any serious infections will have to stop. Please keep in touch. Nice to share. 

Best wishes, Sue

Hi Sue,

Nice to hear from you, yes towards the the last couple of treatments I ended up in hospital for a week with an almighty infection but as we were so near the end they completed the full 8. This does seem to be the big problem with it. My first remission was complete and was nearly 6 years, again without maintenance as it was not funded up here in Scotland then except for relapsed. The second remission is dissapointing but without the maintenance I would have only have got a rather poor partial response. It's comforting to know that there is something else other than CVP and CHOP they can use, perhaps something different will be more effective.

It's very nice to chat,

Best wishes,

Christine.