I finished my 6th R-CHOP chemo session for follicular lymphoma a few weeks ago and had a follow-up PET scan last Friday. Yesterday my consultant told me in a phone clinic that the PET scan showed NO TRACE of lymphoma. So I am in remission. Hurrah! So the terrible low points of this chemotherapy can have some result!
It has also been suggested that I now follow the PETRaE Trial. Half the people on this with PET results like mine, carry on with the usual maintenance of having Rituximab every 2 months for about 2 years. The other half -- me included -- have no treatment. As I understand it, this part of the trial 'tests' how accurate PET scanning is ... with the idea that continuing chemotherapy with maintenance may be doing the body unnecessary harm.
Naturally, I'm a bit worried about not having the further treatment as expected -- surely more chemo would definitely kill off the disease. On the other hand, I sure wouldn't miss the regular Rituximab 'poisoning' every two months for two years. Then again, I'd like to put any possible further experience of lymphoma treatment as far into the future as possible by dealing with it now. But there is also a part of me that feels the least I can do for the medical profession and specialists that have helped me so much to get over lymphoma ... is take part in the trial.
I'd love to hear from anyone who has taken part in PETReA, and what your experiences have been like.
Hi again, just had a search on the site and did not get a hit on PETReA.
But there are lots of folks did not go ahead with the Rituximab Maintenance both on this group but also in our Follicular Lymphoma group so let’s see if anyone picks up on your post.
