Rituximab problems

Hi @Jsa, I am glad you are pleased with your progress so far, please let us know how your tests go.

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Hi Jsa I have splenic marginal lymphoma & one of my many types of chemo involved Retuximab with Bendamustin my first dose caused a severe feeling of a constricted throat & severe shaking like you it was then infused more slowly, with less severe effects. My consultant asked me to teeart in a retuximab trial.This involved the Retuximab being injected subcutaneously into my abdomen by a research nurse over a slow 5 minute period. The difference was amazing no shaking or throat constriction .It was given to me each time by this method. The trial was conducted during my treatment at Cityhospital Nottingham .Perhaps you could mention this to your consultant. Hope the information is useful.My very best wishes to you ANN

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Hi Ann, that is very interesting, I guess the injection method is absorbed far slower than directly in the vein. I will mention it to my Clinical Trial nurse and consultant.
Regards, John.

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Hi @Thelimes thanks so much for sharing your experiences with @Jsa. Really hope you’re doing ok at the moment!

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I started rituximab together with chemo in October 2020. My first session was similar to yours with chest pains etc - was taken to emergency and eventually admitted to the hospital. Had an angiogram the following day and four stents were fitted. The people in the treatment centre and my haematologist all denied it was caused by rituximab - but I felt fine until an hour or so into treatment. The next treatment I had a severe reaction to the chemo drug (cyclophosphorate - SP?) and it was discontinued and I went on to have four further treatments with rituximab. I have now developed bad arthritis - and after a further infusion 3 months after the last my latest side effect is numbness in my hands and fingers. I have another infusion in 3 month’s time and wonder whether it is worth taking the chance of more things going wrong!

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Hi @Ruthie, a great big welcome to our forum.
Gosh you have been going through it over the last 6 months.
I understand your concern over your next infusion.
I cannot help medically but what I can say is that I find this forum supportive and I hope you will too, you might even find people with similar concerns.
If you would like to talk to someone you can contact the Support Services Team on 0808 2080 888 (Mondays: 10am-7pm, Tuesdays-Fridays: 10am-4pm, Saturday, Sundays and Bank Holidays: 10am-1pm) or via email at support@bloodcancer.org.uk.
Please take care of yourself and keep posting how you are. I look forward to hearing more from you.

Hi @Ruthie. Sounds like it’s been rough and I completely understand you worry about the next lot of treatment. What are your medical team suggesting? As @Erica said, the helpline might be able to advise further. Please keep us updated and let us know how you are. Everybody here is so supportive and it’s a great place to share X

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