I'm sure we all wanted to know if the person sitting next to us was patient, or family member, and if patient, what type of Lymphoma patient? And what was their status? And what treatment they had? And what side effects? And a million other things. But we kept it to small talk. At first. Later, after we broke up into smaller groups of different disease types, and then broke for lunch, the ice was already broken. We knew we were all folliculars and we had more opportunity to talk.
A lot of the discussion was focused on the issue of maintenance therapy. In short, many follicular patients have embarked on a two-year plan of Rituxan treatment once every two months, following successful treatment. There's no evidence that this so-called maintenance therapy improves overall survival, but a study has shown an increased duration of remission. Sounds good, right? Well, I had gone into the conference pretty well set on the idea of not getting maintenance. But on listening to the Q & A, and then having a discussion with my table mate -- a gentleman a little younger than me who was now about halfway through his Rituxan maintenance, I was now leaning the other way. Why not do maintenance?
That was the question I tossed about as I drove up to NH for the remainder of Matthew's soccer tournament. By the time I arrived I was convinced I would do maintenance. So after dinner, I emailed Dr. L with some questions. Shortly later, she replied. And the long and short of it is this: none of the maintenance vs no-maintenance studies involved patients who had been treated with Bendamustine-Rituxan, which is proving to likely be superior to other therapies studied. So the likely benefit of maintenance after B-R s likely to be less pronounced, or non-existent, not because of maintenance's shortcomings, but because of B-R's strengths. So we are back to making a decision based on the Do Something / Feel Healthy decision axis.
Which for me, means I'm back to no maintenance.