Hi, my first post on here since my recent diagnosis of Low-grade, Stage 3 Non-Hodgkin Follicular Lymphoma in May 2024.
After an initial mis-diagnosis of breast cancer back in March and subsequent change, it’s taken several months to get my head around the fact that I now have a blood cancer. This is due in part to the fact that I have no physical symptoms. In fact, having purposefully lost over 3stone in weight following Slimming World’s eating plan, I’ve been feeling fitter and healthier than I have for a long time.
Now with a haematology consultant and care team who have been very helpful and supportive, I’ve been given the option of remaining on an Active Monitoring system or to take up the Rituximab 4-week treatment. I’ve been trying to read up on the effects, the pros and cons of this treatment and am still a little unsure/ undecided as to what to do. To start with I was happy to proceed with active monitoring for several months/years until I or the experts noticed any changes, but after my most recent follow-up appointment, i came away with the idea that it may be more beneficial to take the Rituximab route sooner rather than later.
Am I right to think that it’s better to take the four Rituximab infusions whilst I am still fit & well rather than to wait until my health deteriorates? Or is it that the drug will have greater overall impact on my long-term hearth if I take it sooner? (Might be helpful if I tell you here that I am currently 65 and that the benefits of Rituximab I’ve been told, can hold off progression of Lymphoma for up to 10 years).
I’d really appreciate any helpful feedback on this, together with anyone’s personal experience of taking the rituximab route… when best to start & experience of!
Thank you
Hi Chips3 and a warm welcome to this corner of the Community although I am sorry to see you joining us. I am Mike and I help out around our various Lymphoma groups.
I don’t have Follicular Lymphoma but for some context I was diagnosed way back in 1999 at 43 with a very rare, incurable but treatable type of CTCL - NHL Low-grade non-Hodgkin lymphoma ……. eventually reaching Stage 4a in late 2013 when a second, also rare type of aggressive PTCL - NOS NHL was then presenting so although my Lymphoma ‘type’ is different I do appreciate the challenges of this journey rather well.
I have had lots of Rituximab (over 750 hrs) as part of my main chemo between late 2013 and April 2014… and I had no real issues with the regimen and it was rather strong stuff…..
But I was basically on Active Monitoring (Watch and Wait) for 14 years before I needed full on treatments but my story is rather complicated (See my story)
I know that people react differently to having Rituximab. It’s not chemo but a targeted therapy and used both as is proposed for you, as part of a chemo regime like me but also as a maintenance treatment after a chemo regime….. the maintenance can often be more demanding as the body has been through a lot during chemo.
Let’s see if there are any members still looking in who have experienced the same proposal that you have been given.
Am I right to think that it’s better to take the four Rituximab infusions whilst I am still fit & well rather than to wait until my health deteriorates?
This is a logical thought but as you are 65 you have to balance what the benefits would be as in the time that this would push back the need for more full on treatment when you older….. but you could look at it the other way round in that you could stay on active monitoring and get old and still end up having full on treatment…… it’s a difficult decision.
Happy to chat more at any time.
Hi again Chips3 we all do what is needed to keep ahead of the beast….. and so far so good for me 
Follicular Lymphoma is the most common of all the Low-Grade NHLs….. yes like my type of CTCL it’s seen as incurable at the moment but very treatable if and when required.
As you wait to see if there are any group members with first hand experience around to pick up on your post (members with low-grade NHLs do tend to come and go as this fits in with the rhythm of the condition) you may also want to check out the Lymphoma Action.
Lymphoma Action is the main UK Lymphoma Specific Charity who have lots of good reliable information, videos..... basically all things Lymphoma....... pre, during and post treatment.
They run regular Support Platforms with many people having FL..... I highly recommend these groups as there is nothing better than ‘talking’ with others who have walked or are walking the sane journey.
They also have a great Lymphoma Action Buddy Service where you can be linked up with someone who has walked the same treatment journey and have the opportunity to chat with them,
Lymphoma Action have a Lymphoma helpline on 0808 808 5555 open every week day from 10 till 3. This is a safe place to talk this through and get support.
You may even bump into me in the LA platforms as I have been a volunteer with them for a number of years.
Always around to chat.
