Hello Rich,

I too have Follicular Lymphoma, have had for the last 7 years. I relapsed late 2012 and I am currently on Retuximab maintenence every 12 weeks until the end of this year. Mine is every 12 weeks because I am relapsed, there was no maitenence R 7 years ago.

With regard to hair, I finnished 6 cycles of RCHOP the end of Febuary last year and I now have a full head of hair although somewhat curly not strait as it was before chemo. I do not feel sick on this treatment but do get tired easily and very prone to infections and bugs. No other drugs are prescribed with this for me.

I have to have a clinic appointment a week before my R with bloods taken to make sure all is still well. I hope this is helpful, if you have any more questions please ask an I will try to help.

I hope your scan goes well and that you have had a good response to the RCHOP.

Christine.

Thanks Christine so good of you to reply.

Sounds like I can hope to get my hair back which is good news! As you say I think this maintenance plan has only been adopted a couple of years now but seems to be favourable.

Consultant has told me to take care not to overdo it with exercise as I was hoping to get back on my bike but will take it slowly.

Good to hear that you are tolerating the maintenance chemo well as I have found the RCHOP a bit of a roller coaster and didn't fancy full symptoms again or all the follow up drugs and steroids.

I see you managed 7 yrs before relapse, is that the kind of timeframe you had been told to expect? I haven't really been advised ( I am 49 yrs old)

Cheers

Rich x

Good morning Rich,

Yes Retuximab is nothing like the CHOP part, that was tough, so was the RCVP I had 7 years ago. I have found as I go through Maintainence the effects do become cumulative as time goes on.

Do take your Consultants advise and build up gradually to getting back on your bike. With regards to time to relapse, I don't think they really know. The best I ever got out of them was, we hope it will be a good few years before it relapses. It is something all of us with this condition have to come to terms with, that it will almost certainly come back at some time, somehow, eventually, you seem to get used to the idea. I was 57 when I was diagnosed, by the way, a wee bit older than you.

Well clinic this afternoon, more needles! OH joy!

Christine.

Thanks Christine.

Best wishes for your treatment.

Rich

Thanks Christine.

Best wishes for your treatment.

Rich

I'm so glad I stumbled on this post!

I have follicular lymphoma stage 2/3 and have also just completed 6 cycles of R-CHOP. I may have to go onto maintenance rituximab, so this was definitely of interest. I'm just waiting for a PET scan to see if it'll be necessary or not.

Emily