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

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

Hi Doroty,

Follicula Lymphoma is a very confusing illness. All doctors have their own ideas how to treat and what drugs to use and when to use them. I had RCVP 12 years ago and a complete response and no maintenance needed. Six years ago I relapsed and had RCHOP which did not do a great deal, but two years of Maintenance afterwards gave an almost complete response. so was very worth while. You only get one go at maintenance so it is best to use it when it is needed. If I had had it 12 years ago after my complete response I could not have had it when I relapsed and definately needed it.

I hope this helps and makes things a little clearer.

Christine.

hello christine thankyou for your response its difficult to know what to do  this is why i am collecting info mation from the people that have to go through this. i am seeing  the doctor in october  and am not leaving his office untill this iis made clearer to me. i hope you are keeping well  and thankyou again for your support    

doroty

Hi iv just came across this post..I too have follicular lymphoma stage 4 an have had 6 cycles of rcvp I am now on a maintenance of rituximab for 2years. I feel nauseous an tired all the time but my doc says it's nothing to do with the cancer or the treatment. I don't feel they give you enough information about this cancer. I was first lead to believe it was a slow growing cancer but I really don't no now if this is so. Can anyone give advice please

Popta

Hi Popta

have Mantle cell lymphoma which is the same treatment for follicular lymphoma, I was stage 4 and have just finished my 6th treatment in February.  My consultant said the CT scan showed no cancer now and I didn't need the maintenance treatment so I was really pleased as I had a few infections in the 2nd half of my treatment.  Then I got a phone call from my consultant to say the MDT said I could have the maintenance treatment Rituximab for 3 years, she wants me to make the decision.  Don't know what to do as I have no statistics to make this decision so in a bit of a quandary at the moment.  I am worried about  the side effects and infections!  My lymphoma is low grade which is slow growing.  High grade is fast growing so you could ask one of the specialist nurses which one yours is.  

Maureen