Hello
Is there anyone on this forum who is on a clinical trial for Follicular Lymphoma?
K
Hi again Karen14.
As you are asking about Clinical Trials I can only assume that you have had a relapse…. It would be helpful to fill us in with some more information.
Hello,
thank you for your reply.
Yes, I had Rituximab, beginning of 2024, then a lesion was found on my left clavicle and I had radiotherapy in March 2025. November 2025 I started with a sore throat which I couldn’t get rid of, long story short after throat biopsy’s and another PET CT, it was established it was not throat cancer, but linked to my lymphoma & the scan showed my lymphoma was active again in various locations.
my Consultant shared the news that it is likely time for Chemotherapy, but also mentioned that my situation would be referred to the clinical trials team.
I just wondered if anyone on this forum was on a trial, if so what is there experience, any pros/cons they could share.
many thanks
K
Hi again Karen…… this information will be very helpful.
Have they done a biopsy in your new presentation?…… I ask this as FL can transform into another type of NHL.
Let’s see if any group members have had the same experience especially with regards to trials.
The pros/cons……. The pros of the exciting chemo regimes available is they are a known entity both with regards to their effectiveness but also the side-effects…….
Trials are often a new drug, or a re-jig of some existing drugs that could be chemo with the addition of some new drugs - not necessarily chemo……. The issues is it is a trial, so you are basically dealing with an unknown quantity with regards to effectiveness and side-effects.
These are the questions you would have to ask.
I was on a trial approach leading up to my first Allograft SCT…… (remember I was being treated fur 2 rare types of T-Cell NHLs at the same time) there was no chemo used and if it worked so would recover very quickly…… I did recover very quickly but the Stem Cell graft faked within 6 months…..
So 10 months the later I had my second Allograft SCT using conventional chemo and I am 10+ years out - doing great.
Whatever cancer throws your way, we’re right there with you.
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