2 years maintenance rituximab

Hi Ruby

I had 6 round of RCVP starting in December 2014, followed by 12 rituximab which finished in March 2017 for FNHL.

Apart from a very low Neuts count after my first treatment, all went well.  Injections given subutaneously and that made a big difference to time spent at each hospital visit.

Most important advice I can give is make sure that you drink plenty.  I took 2 bottles of water and drank them before treatment along with water and fruit juice supplied by hospital staff.  Initially I would feel very tired and would go straight home to rest that day.  Within a few days I would start to recover and could continue my life.   But with each treatment I became less tired.  I believe that much of the tiredness stemmed from the previous RCVP treatment, hence the more time passed, the rituximab treatment became less debilitating.  Laterly I would go out for lunch with my husband after treatment and only feel a little tired for a day or so.

I am pleased to tell you there was an unexpected positive side to the Rituximab treatment.  I am in my mid 60's and while receiving treatment did not have any of the aches and pains associated with my age group.  In fact after my fit n fifty sessions my friends were astonished at my lack of creaks and groans both during and after our exercise session.

Advice over coming 2 years, stay well hydrated, eat well and exercise when possible even if it only a short walk.  The treatment journey is long and at times mentally exhausting, we might all take different paths on this journey, but we are never alone. Not while we have the support from those around us and from everyone on this online community, especially John/ Highlander.

Best wishes to those starting or having treatment hope the jounrney is smooth.

Ilene

Finished my two years' rituximab last week following 8 R-Chops and 4 Methotroxate.  All went well and both the nurse and consultant said that I had taken the treatment well - so, fingers crossed for the scan!  Found it very tiring - usually fell asleep after the piriton went in!  Had it all intravenously - had a problem getting a vein on the 10th treatment, but managed eventually (I had my R-Chop via cannula).  Had a few headaches after the latter treatments, but generally it was just fatigue.  When I started the treatment I also started swimming and going to the gym three times a week, which I'm sure helped.  

Good luck.  The two years will fly/

J

Hi Ruby / anyone else

Due to start R-maintenance this Friday. Am bit anxious about side effects of  ritiximab as all Dr said was same as chemo but less severe and not as long - I felt pretty crap after chemo for two weeks after each session! . Have experienced muscle / joint pain since R-chop finished and am due to take part in 5mile charity walk two days after first maintenance session ( I know.......didn't have joint pain when I signed up and first session was due to start in July. Any guidance greatly received. :0)

Hi some report fatigue as an ongoing side effect, after that it should be not as bad as rchop.

John 

Hi

I’ve been getting Rituximab as part of my chemo and have no side effects (not as yet anyway, 3 cycles in). They did have to slow the IV down the first time as I had a slight reaction but subsequently got an injection in my stomach (5 mins) which was much better than the 5 hours IV. 

I’ll be getting it for 2 years too after my chemo’s ended. 

We’re all different of course but I hope you get on well with it.

It's really nowhere nearly as bad as the R-CHOP itself- my partner is nearing the end of her two year maintenance and it's actually been very straightforward with no really bad side effects and of course much, much quicker than the R-CHOP sessions too.  Hope all goes well for you , best wishes

Hi Bubbles67 I had Rituximab as part of my main 6 cycles of chemo so it was administered in a different way but had no problem with it. I was in hospital for 5 days/nights for each cycle and according to my FitBit I was doing 2-3 miles around the corridors of the ward each day...... so I think you should be ok :)

Hi I starting my injections next week every 2 months for 2 years… and a bit anxious on what to expect… mind my chemo was a day and a half every 4 weeks so can’t be anything like that. 

Rituximab injections can either be intravenous or subcutaneous. I had intravenous and after the first one which took a while I was given them fast tracked over one hour. I never had any side effects although I'm not sure if it affected my energy levels or if the chemo has just taken a long time to get over, but now I've finished the maintenance I'm gaining more energy every day. Psychologically speaking I found it good because I felt safer from recurrence whereas now I'm finished I'm back to worrying!

Hi thanks for the advice… I know where you are coming from once I start the maintenance and know what to expect I sure I will be okey.. however it’s what’s happens at the end though when it finishes