Rituximab- my experience.

Rituximab is the mainstay of my treatment for Waldenstroms.1st treatment was Rutuximab on its own; 1 infusion per week for 4:weeks.

I had mild headache during the first infusion but otherwise no adverse effects. Can take up to around 5 hours. I'll pass on the prepping because I think its variable from one institution to another and depending on the reason & dosage for your condition... except I think you normally have corticosteroids before..

It has worked for me with virtually no complications: My neuropathy associated with the Waldenstroms improved dramatically. I believe my monoclonal peak diminished too. Remission before relapse lasted around 3 months. I had Rituximab + dexamethasone+cyclophosphamide after that for 12 cycles over 10 months. (I had bad nausea with the cyclophosphamide for up to a week after each infusion). Remission again only lasted around 3 months.

Now on cycles of rituximab + daily Ibrutinib About 2 months on, I'm finally starting to feel some benefit, with only mild side effects now I'm on a lowered dosage of Ibrutinib. Feeling stronger, walking is improving.. (Initially I had bad acid reflux & diarrhea on 420g of Ibrutinib & consequent sleep disturbance ). The hope is for continous remission by keeping a 'pressure' on my Waldenstroms' macroglobulinemia. 🤞. My monoclonal peak was discovered 2016 & the neuropathy began about 6 months later. I'm 67 now, survived covid before I was able to get vaccinated & still here, so something appears to be working! 😁

[AmCLL]

Good health all the way🤗

[Jacksc06]

Great news. Long may it continue.

[robwats]

Thank you for posting this Rockyk. I too have WM but rarely see much information on this disease. I'm currently on W&W but the treatment being discussed as my spleen gets bigger and blood numbers slowly deteriorate is DRC. I belive NICE has approved Zanubrutinib as second line after chemo immuno treatment. Best wishes for continued progress with Ibrutinib.

[Hidden in reply to robwats]

Best of luck with any upcoming treatment. It was accompanying neuropathy that triggered treatment in my case. Waldenstroms appears to affect people very differently and people respond differently to different treatments. There's some kind of standard protocol I believe but its still a bit hit n miss finding what suits you best!