I was having ritixumab for follicular lymphoma, after first treatment in October I became very unwell a week later and ended up in hospital. Tried 2nd dose in mid January and got very sick immediately and ended up in hospital again. Have now been moved to watch and wait. Have no symptoms so that suits, but am wondering how I will manage should I eventually need treatment again.
S
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Hi @Marysiobhan I am so glad that you have posted on our forum.
Your side effects to ritixumab sounds really nasty.
You say that you have no symptoms and it suits you to be on watch and wait.
I am not a medical person, but I am also on watch and wait with another blood cancer.
The way I am looking at it is I will actually wait and see till I need treatment as medical thinking is changing all the time, NICE is often approving different treatments and research and trials are coming on board as well.
So I will take medical advice and consider my options when I need to.
This is just my personal opinion, I hope others will give their thoughts.
Perhaps just live your life and enjoy yourself
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Hi @Marysiobhan,
A very warm welcome to our forum. I do hope you are doing okay?
It’s likely you will meet many others living with FL and have both some wonderful support & shared experiences. I’m so sorry to hear that you were very poorly on Rituximab.
It’s completely understandable that you will worry about the future should you need treatment again.
Can i ask if you have been able to ask this question directly to your haematology team at all?
As you will likely be aware, treatment for Follicular Lymphoma entails many different drugs and it may be the team make a decisions to steer away from rituximab and try an alternative antibody/ treatment type.
In case it is helpful our webpage here talks through some of the treatments available- Follicular lymphoma treatment | Blood Cancer UK.
Should you wish to talk anything through with us at any point, don’t hesitate to call our helpline- Blood cancer information and support by phone and email | Blood Cancer UK.
Best Wishes, Lauran
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Thank you so much for coming back to me with such positive comments. Yes I do appreciate that I can be monitored via watch and wait, and that I don’t yet have symptoms. I do believe it’s a case of taking each day as it comes, and I wish you well in your journey.
MarySiobhan
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Thank you so much Lauren,
Yes my consultant is arranging a Pet scan to see if the two treatments have had any impact on my lymphoma, and he said at my last appointment that if and when treatment becomes necessary, they will explore other options. Also, thank you so much for the links in your reply, I will look at these closely, all of this information is really helpful.
MarySiobhan
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