Rituximab Maintenance

Hi Rob,

I'm a year and half into maintenance and find the only thing for me is fatigue. Day of infusion (also fast) and the following day in particular, from then on it's now and again. I'm sure long hours of work on my feet don't help any!

Cheers

Another Rob

Hi Rob,

Right okay then that's good because that like me of colour for 2 days then back to normal but get that shock fatigue anything from 10 minutes to an hr. then normal again...

I get the impression Dr's follow the protocol and hope we don't make a fuss... :)

Anyone else?

Rob.

I had my first Rituximab maintenance infusion today. Hoping the side effects wear off in a couple of days, just tired and achy with headache.

Hi Chelle,

I've only had one maintenance therapy so far. The tiredness is now improving and I've thankfully had no mouth ulcers. I seem to be gluten intolerant so I'm gluten free and I use goat's milk as well for good measure. Those have helped enormously with the diarrhoea.

I know I have osteoarthritis, I've had one joint replacement but I've had a lot of further trouble with a different joint. My CT scan threw several further problems into the mix, I was blissfully unaware of them all previously.

Each day is different which is extremely difficult as there's no warning and some nights I can't sleep, again there's no telling.

Hi Chelle

I'm half way through my two year Rutiximab maintenance.  I find there is a small pattern in that the first two to three weeks after the top up my joints ache and I too feel 90 instead of 49.  Stairs are a nightmare!  After that I get a couple of weeks feeling great and can tackle anything and then it starts to go down hill in the fatigue stakes!  The week before another top up I can't wait for it to come!  I am sooo tired and have no energy for anything.  Luckily at work I can slow things down and at home nothing gets done.  

I was very worried about this leading up to my last top-up and went to my GP, the first time since on maintenance he did some blood tests to rule out other things, the only thing he could find was a low vitamin D score so I had a shot of that.  This time round I too had a couple of mouth ulcers which was a shock and lasted two weeks.  I had forgotten how miserable a sore mouth was!  Having said all that my life has been under considerable stress recently and I've had visitors!   So I agree with John in that it is a barometer for overdoing things and I need to accept I will not be able to manage/cope with as much as I did before.  My next six monthly scan is in July an dI pray the beast is still sleeping.  Best wishes  San x

Okay, so I'm half way through my rituximab maintenance and my next six monthly scan is next week.  I've had PET CT scans before but this time it's going to be a CT Scan.  Can someone please remind me what the difference is between the two types of scans and why would it be a CT scan this time round?  The ol' scanxiety is kicking in and I can't wait for it to be over so I know which way it's going.  Thanking you in advance and keep smiling everyone.  San x

Hi,

Did you get your results back? A PET is just the contrast stuff they pump into you, it makes active nodes glow and makes it easier to measure the extent of the cancer. Some places call it a Scan with High contrast others PET scan. I think that's right, the results tend to be same either way.

Hi Rob,

I have only two more infusions to go of a 2 year course of Rituximab Maintenance. Finish In January.

I also have Rheumatoid Arthritis and i was told that they use Rituximab to help ease pain levels in that condition.I didnt have any side effects during the actual infusion but for the next 2 to 3 weeks feel tired sometimes nauseous but overall feeling quite good.I do have some leg pain mostly in the calfs which come and goes and i have clicking and hissing in my ears when i wake up in the morning.I sometimes wake up during the night and have a small 30 sec sweat,and then go back to sleep.I have told my oncologist about these but she does'nt seem to concerned.

Overall quite good for me but i know everybody has a different reaction

Charles