Saturday, February 2, 2008

CLL Seminar in San Francisco

Dave and I attended a seminar this morning at the Hilton in downtown San Francisco: "Emerging Therapies for Blood Cancer Patients." It was organized by the Leukemia & Lymphoma Society and sponsored by several drug companies. The seminar was for patients and their caregivers and it was free!

Before I get into the details about this event, I just want to say that I have been very impressed and thankful for the assistance we've received from the Leukemia & Lymphoma Society since Dave's diagnosis. We got a big package of materials from them, in the mail, just days after we heard the news (the hospital social worker sent Dave's name to them.) It was during that time when we were still reeling from the shock. Not only have they been better than average in terms of providing information, but they even offer financial assistance. They'll be on the top of my list of charitable donations forever.

This was my first time at one of these LL&S events, although I used to attend things like this when I was still working as a nurse. Based on those past experiences, I was expecting the usual coffee & donuts before the first speaker began, at 9:15am. Imagine my surprise at being seated in front of this:

It was a strange feeling to sit in a huge ballroom, filled with hundreds of people, and think, "Most of these people have Leukemia or Lymphoma." You'd see a couple, and try to guess which one was the patient and which one was the caregiver, and it wasn't possible.

Throughout the day, every doctor or nurse who spoke kept expressing their frustration with the current state of health care in this country.

One of the first presentations was a special award that was given to Dr. Ronald Levy - he's the guy who invented Rituxan. Dave got all choked up and said, "That's the guy who saved my life." (That's Dr. Levy at right.)

The keynote speaker was Dr. David Spiegel, (at left) who gave an inspirational talk on "Living With Uncertainty." His specialty is stress disorders and he had some practical advice about living with the sword of Damocles over your head. He had done a lot of work with breast cancer patients, so many of his slides used artwork from those patients and examples from their stories. After his talk was over, we were talking with the couple next to us (the husband had lymphoma) and she said that she had breast cancer, so it seemed like the talk was custom made for them.

For the disease-specific talks, they divided us up into several different rooms, each with our own specialist & topics. The CLL room was packed - the speaker was Dr. Steven Coutre, a CLL researcher. I could tell he was trying very hard to avoid technical language and speak ordinary English, but he was still talking way over the heads of many (if not most) of the people in the room. His talk was about the latest prognostic tests and newest therapies, meaning things that have been learned in the last year about CLL treatment. He had tons of charts and graphs and thank goodness he had all the slides on a handout that we could take home and study at our leisure.

The good news is that:
1. Some promising new therapies are coming down the pike.
2. Dave has been getting good standard-of-care therapies.
3. I still wish we knew more about Dave's gene and chromosome status, but it wouldn't really change his treatment at this point.
4. There was nothing presented at this seminar that I didn't already know. This made me feel pretty good, because it meant that I haven't missed anything major in my personal cram-course of study on CLL. (And I give most of the credit for that to Dr. Chaya Venkat at CLL Topics.)

There was a question-and-answer session after the talk and Dr. Coutre committed to answering every question, no matter how long it took, which I thought was wonderful of him. Sadly, a high percentage of the questions were things he could not answer, and they indicated (to me) that most patients are not as interested in the technical research info as in quality of life issues. People had a lot of questions about night sweats, joint paint, fatigue, alternative therapies, diet, cost of treatment, best CLL centers, familial links to immune diseases . . . I wrote a note on my evaluation suggesting that they get a nurse and/or peer group to hold a session on those topics next year.


Anonymous said...

Anna, what a WONDERFUL event for you two to have been part of!
It does indeed sound like a group worthy of $$ support. I bet they will take your parting feedback very seriously.

Anonymous said...

Yeah, sounds like a great time. I do find, as you do, that the talks are really geared for those who know nothing about CLL.

I don't get that much out of them, except to meet other CLL patients, which is wonderful in itself.