Offer of immunotherapy

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Hi I’ve completed 6 months of Rituximab and Bendamustine for Follicular Non Hodgkin Lymphoma. The scan at the end of the treatment shows there are still a couple of nodes near my stomach but the Consultant says she’s not worried about them? They are having a meeting to decide if I am offered two years of immunotherapy. I am off work at present and have been since I was diagnosed in January 2025. Can anyone advise me if I would be safe to return to work when my immune system is so low. I work in the NHS so would be working in an environment of poorly people. My managers are asking me to give them an idea of whether I can return to work. I also would like to ask what the side effects of immunotherapy are? Thank you for your advise.

  • Hi  I have no experience of the route you are going down (as well as having different types of NHLs)…… so let’s see if anyone is looking in who can help you out……

    From what I have seen on posts on here over the years and on the various Lymphoma Action…….  Support Platforms… especially their very active Closed FB group Rituximab or obinutuzumab is often used for this treatment.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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  • I think you mean 

    Maintenance Therapy in Follicular Lymphoma

    There are some videos on Youtube that might be worth watching

    You will be at greater risk of infection during treatment.

    As for working you don't say how old you are but I doubt that even the NHS will allow you to be off for the whole 2 years

    I only had rituximab on it's own as a treatment and i felt ok and worked the day after each course.

    But everyone is different.

    Good luck

  • Hi Ice Cream Girl,

    I've got FL too and had the same meds as you.  I was very allergic to Rituximab and the scan was clear, so they decided not to give me follow up for 2 years.

    Bendamustine has an unfortunate tendency to suppress immunity for some people time post treatment.  My immunity never recovered and because I'm old, it probably won't.  I've got used to living without much immunity.  My neutrophils eventually crept up to just within normal, but my lymphocytes didn't.  I've been admitted to hospital 3 times for IV treatment of infections & I get vaccinations.  Not sure these work for me...

    The lifestyle is a bit like being back in Covid,  so I carry and wear masks in crowded spaces, public transport, shops.  Nobody has ever questioned this.  I'm a retired nurse, so I understand your concerns about exposure.  It can't be that unusual because people who have organ transplants take immunosuppression drugs for life to prevent rejection.

    Perhaps we should consider impaired immunity as a disability for work purposes and maybe your employers could use their own occupational health advisors and enable you to return to work in a less exposed situation? 

    Good luck with getting back to work!

    Cecren