Rituximab Maintenance Injections

Hi DFC and welcome to this corner of the community. I am Mike and I help out around our various Lymphoma groups.

I was diagnosed in 1999 with a rare, incurable but treatable type of NHL (CTCL) Stage 4a so although my Lymphoma ‘type’ is different I know this journey rather well.

I had actually had over 570 hrs of Rituximab during my 6 x 5 day/night cycles of my chemo. It was given through my PICC line and had no problems with it but let’s look for anyone who has had it as maintenance to pick up on your post.

Yes, I'm doing rituximab maintenance too. I opted to do it every 12 weeks. I've done the fourth this week, so four more to go. Do you get any side effects? I seem to ache, particularly my hips and feel very tired for a week or so afterwards.

Londoner12 said:

I opted to do it every 12 weeks

This is interesting; how does it work? I am now wondering where I can find information about making this choice.  I have been told that if ever I need treatment it's going to be rituximab first of all, and up until now I assumed it would be the same as it has ever been -- that they set the schedule. 

Ah, Rituximab as treatment is different from using it for maintenance. We, DFC and I, did chemo to get into remission and then ritux to try to keep into remission for a long time. As a treatment it is often done once a week for four weeks. As maintenance it's often done every eight to twelve weeks for two years. My consultant is open to hearing my point of view and as the effects of ritux on the blood last for at least nine months, I suggested that twelve weekly would be fine and he agreed.

Thanks for this, I get it now. 

I seem to have side effects too. Tiredness, nausea and generally feeling unwell. 

What made you opt for every 12 weeks? Do you have yours injected directly into your stomach? Do you have any visible side effects in the injected area?

I have a total of twelve injections. Two down ten to  go. I have quite a reaction in the area where I’m injected. 

I just wanted to go for treatment as least often as I could. I relapsed a year after doing chemo and radiotherapy and had to do another course of chemo and I'd had enough. I have the ritux as an hour long infusion in the arm. I can't do the abdomen injection because I do weekly infusions of immunoglobulin (donated antibodies) in the abdomen at home myself, and so can't use the abdomen again. I've seen people doing the injection at the hospital and am jealous about how quickly they are in and out.  

Sorry to hear you had a relapse. I finished chemotherapy last November. I only did five as I was too I’ll towards the end. 

Your absolutely right. The injection into the abdomen is really quick. I’m back at hospital on Tuesday for another injection.

Can I ask how old you are? I’m 54 and was diagnosed last July. I had had problems with my blood counts so was on a watch and wait and then slowly each month they deteriorated. Until eventually they had to intervene with treatment. It kinda happened really quick and I didn’t really have time to take it all in. 

Hi there, I'm 67 now. Was eventually diagnosed in 2017 after three years of strange skin lumps and blotches not being diagnosed. In 2018 it went systemic and I needed treatment. Now I'm back in remission.