View from the Brooklyn PromenadeThe weather in Brooklyn is wonderful and the view from the nearby Brooklyn Heights Promenade is iconic.
But I am spending most of the daylight hours indoors at the North American Lymphoma Research Foundation Educational Forum at the Marriott.
And I am happy to be here. LRF does strong work in several areas.
This Forum is an example of the kind of high quality education that it offers on lymphoma. For the approximately 500 patients and caregivers attending, the lectures are clear and comprehensive and certainly not simplistic. All the doctors (Rick Furman and Matthew Davids for CLL) are on top of their game and all volunteer their time.
Another strengths of LRF is funding important research. A blue ribbon scientific advisory boards reviews the grant requests.
And finally, they are involved in patient advocacy, from what I see, mostly at the government level, where they work with other advocacy organizations such as LLS (The Leukemia and Lymphoma Society).
The hot advocacy issues today I heard being discussed are research funding being affected by the current budget goings-on in congress, compassionate access, and oral parity.
So what actual educational tidbits have I learned? Please understand that this is not a meeting such as iwCLL or ASH where new research results are revealed, but rather where they are pre-digested and handed back to new and experienced patients in manageable bite size packets.
In the CLL breakout session, Dr. Rick Furman made it clear that the importance of ma ny of the new prognostic factors is becoming more or less moot as we enter an era of small molecules because these new drugs are for the most part oblivious to them. They work well for the vast majority of patients.
However, the groundbreaking work by Dr. Rai on CLL staging published in 1975 still is helpful. One strong warning: you must completely ignore the average life expectancies attached to each stage. Pay no attention to the Kaplan-Meyer curves. Those were retrospective in 1975 and bear no relationship to the present reality with improved management and better therapies. We are all living longer.
And for those who are regular readers of my blog, this last item is hardly news: Dr. Furman sees the end of chemotherapy in CLL. I sure like that.
In the general session, Dr. Sonali Smith admitted to the need to revise the lymphoma staging systems to better reflect what we have learned in the last decades. I learned that in some cases disease burden trumps staging.
Dr. Hsi, a pathologist, said that most labs could perform the bulk of the fancier diagnostic tests on a paraffin specimen. There only a few circumstance where there is a need for the better DNA preservation offered by a frozen section.
Still, before any biopsy for possible lymphoma, I would always ask the surgeon to check with the pathologist to be certain the specimen will be properly handled to give you all the results that you need. A dear friend of mine was moving rapidly towards heavy chemo (and possible transplant) for Richter's Transformation (RT) until she got an outside pathology opinion that showed the biopsy from her enlarged node had a viral infection that was mimicking RT. Whew!
In the end, what is more valuable for me than the lectures at the Forum is the networking with old and new friends with CLL, and to their credit, the meeting planners built in enough time to make sure that happens.
So, if you have never been to North American Lymphoma Research Foundation Educational Forum, plan to come, and if you been before, why aren't you here?
More from tomorrow sessions soon.
