Wednesday, March 27, 2013

What's A Guy Like Me Doing at A Conference Like This?

A funny thing happened on my way to last blog post. I had been writing it over the course of a couple days and right before I posted it... I hesitated. Then I hit publish.

The post has been somewhat popular, and I'm not that surprised. For one, it was a Top 10 list. But it was also as honest as I've been in my blog and I think that helped. So did  a couple of posts on a Facebook site I hadn't discovered yet, and on one I had.  

The anticipated popularity  is part of why I hesitated. Now that more of you may be reading this, there's more pressure to post with both frequency and quality. It's the frequency that frightens me. When I switched the blog from a private thinking, and perhaps healing place to a more public forum, I resolved not to write any differently, or through any different filters. I didn't -- and still don't -- want to post on some set schedule that pushes me to post when I have nothing to say, or no time to process what I'm writing. Because first and foremost, that's what I'm doing here -- processing things by thinking out loud. Hopefully that process is also helpful to others. That means I might post three times a week sometimes; or, like this week, only once. 

Okay, enough blogging about the blog. Back to our regularly scheduled post. 

* * * * *

Some observations from the Lymphoma Research Foundation's workshop in Needham, Mass. on Saturday. 

The advance billing was: great info; great food. It delivered on that. But it was at least a little odd sitting in a room of 150 or more lymphoma patients (or family members). I've been to many conferences before. I've gone as a reporter, an editor, an exhibitor, a presenter, and just an average old attendee. But this was the first one where I went as a patient.  The room was set up in round tables and as I walked in, there were a bunch of partially filled tables, some with coats thrown over the backs of chairs holding space. I tried to find coats that looked friendly. Really. I was looking for youngish looking coats -- or even older coats that looked like they belonged to youngish people. I partially succeeded. But the oddest part was that as we made small talk about the weather, the traffic, the coffee, the overwhelming question on everyone's mind was:

"What are you in for?"

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.

Outside the meeting rooms, there were small tables set up for the sponsors. It's one thing to have information from a cancer center (Dana-Farber was there), or from the Mass chapter of the LRF pitching their walk-a-thon. But it felt odd to have drug companies exhibiting at a conference for cancer patients.  I know it's perfectly legitimate. It just felt odd. 

I've said it before and I'll say it again. I get someone possessive about my oncologist. Dr. L presented about the history of lymphoma and in a weird way, I was rooting for her. For what, I don't know. I suppose, I wanted her to be smart, informed, compassionate, articulate. Part of this could be because she represents Dana-Farber, my employer and center of care. But I think the deeper reason is that if she were to present well, answer questions expertly, then it would in some way reinforce the trust that I have in her as my oncologist. She did great. 

So did Dr. Freedman who answered about an hour's worth of questions from patients in the Follicular Lymphoma breakout session. The instructions to all the attendees was to try to keep the questions broad so they would appeal to as many people as possible, it didn't stop some people from using this as a public appointment with Dr. Freedman.

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.