Hello. I am a 66 year old female with marginal zone non Hodgkin lymphoma.
I had been in remission for about 5 years but have had a relapse and have lymphoma in my neck & stomach.
I am starting on treatment tomorrow, Rituximab infusion once a week for 4 weeks. I haven’t had this before, last time I had surgery & had lymph nodes under my tongue removed.
Could anyone share their experience of Rituximab with me?
Many thanks
Hi Hangoninthere and a warm welcome to this corner of the Community although I am always sorry to see folks joining us. I am Mike and I help out around our various Lymphoma groups. I don’t have Marginal Zone NHL but I was diagnosed back in 1999 with another type of Low Grade NHL although my type is rare and incurable. I was stage Stage 4a in late 2013 and this moved me into having treatments so although my Lymphoma ‘type’ is different I appreciate the challenges of this journey well (Hit my community name for my long story)
I had Rituxitmab as part of my R-EPOCH treatment in late 2013 into early 2014 and I had no real problems with any of my treatment. I had some strong chemo along with the Rituximab so yes I lost my hair but Rituximab is a targeted (biological) therapy - not chemo so many folks find that they don't lose their hair.
I had 6 cycles of my chemo but it was rather extreme so I was in hospital for 6 days/5 nights on my two IV Pumps 24/7 for over 120 hrs for each of the cycles. So I had Rituximab for 96hrs and as I said i was ok.
Yes felt some Nausea but the anti-nausea meds were great so was never sick. Fatigue did build up over the cycles. I asked my very first nurse for some advice for getting through the Chemo and she told me, eat, even when you feel you can't do it try. Sleep when you are tired but keep active, small but often spells of activity.
So after every meal I took Laurel and Hardy (my two Chemo pumps) for a walk round the corridors of the ward. It turned out that I was actually doing about 1-2 miles a day. On the whole the chemo journey was ok and the exercise did help overcome some of the fatigue, sounds so counterintuitive, but exercise does actually it help.
You may find this link helpful Top Tips for the day of your Chemotherapy.
Be prepared for a long day (I am assuming this will be done in one day as an outpatient) as they normally take things slow on the first treatment looking out for any reactions.
Always around to help more or just to chat.
