Live From LRF (Lymphoma Research Foundation) Educational Forum

View from the Brooklyn Promenade

The 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.

They have excellent free disease specific publications and online webcasts and more.The website is our start, especially helpful if we are new to the diagnosis.

Another strengths of LRF is funding important research. A blue ribbon scientific advisory boards reviews the grant requests.

They offer support in many ways. One example is the buddy service that links us to someone else with the same diagnosis to share war stories.

The new mobile app is a must download for any with lymphoma.

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 many 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. That's the upside of having cancer: the amazing people I get to meet and the experience and wisdom and and courage they have to share.

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. But first I sleep.

Day 2:

I wish I could say there was much new to report, but what I would say is the take-away message is that the role of chemo-immunotherapy (think BR, FCR, FR, PCR and others) is either dying for all of us or most of us.

I could argue that for the small subgroup of patients (mutated with the appropriate cytogenetics) where it can be predicted in advance of starting therapy that FCR offers a very high chance of a durable remission (10 years or longer) and the hint of a cure (if you are MRD negative 14 years out, are you cured?), that for those of us and only those of us fitting into that tiny cohort, there might be a diminished but important role for chemo-immunotherapy (CIT). I personally would seriously consider the choice of 6 months and done of CIT if it really offered me a 90+% chance at being cured or at a minimum a 10 year remission.

My friend Wayne (WWW) points out there is also an age sweet spot for this therapy: too old and we can't tolerate the suppression of the bone marrow, too young and the risk of secondary cancers, especially MDS (myelodysplastic syndrome) is too high.

Others says just forget the chemo. Use one TKI such as ibrutinib or idelalisib or ABT-199 as long as you can, and if you develop resistance, switch to the next one coming down the pipeline.

Or maybe add a mAb or IMID to the TKI or combine two TKIs and go for the knock out punch.

Hard to argue with that vision of a chemo free future.

The doctors are split on how to proceed, but there are all shifting their stances in response to the  growing data supporting the new meds (TKIs and mAbs)

The world is changing fast. Stay tuned in.