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.

Brooklyn- The Bottom Line on the North American Educational Forum on Lymphoma

The Lymphoma Research Foundation is to be commended on putting on another first rate conference.

What I like is that while it is totally oriented to help the patients and caregivers in the audience, it tells it like it is.

They may start at the very beginning of the story, for example retelling the very basics on how a mAB (monoclonal antibody such as rituximab) works, but soon they are into the gritty details on how it might be improved upon with the next generation mAB. They don't oversimplify.

Much, but not all is not sugar coated. It does try to be righteously upbeat, but like an an appointment with a good and clever oncologist, you somehow leave feeling positive about the bad news that was just delivered.

So let me hit some headlines.

CART19 therapy (the patient's own T-cells infected with a retrovirus to be re-educated to multiply and to attack B-cells and then re-injected into the same patient) out of U Penn has all the CLLers drooling. You knew that there would be a million questions.

Dr. Bruce Cheson tells it like it is: "The plural of anecdote is not data".

One case reported in NEJM does not signal a cure.

This approach has way too few and is way too new to say anything definite about.

Still it does prove it can be done, not much else. It is a proof of concept study and I am most grateful for its success.

I and others ask how long can you go infection free with no B cells?

Will the remissions hold?

Are there better targets that hit only the CLL cells and not all B lymphocytes? ROR1 for example?

Who is going to pay for this?

Answers are a long ways off.

The next trial will be taking in only 11 volunteers. Unlike nearly all cancer trial, where recruitment can be very slow and difficult, what do bet they will have no problem filling their enrollment? I bet they fill up faster than the pre-orders for the new Iphone.

Dr. Cheson gave the very opinionated and informative breakout talk on CLL.

He is out of Georgetown and has made many important contributions to our knowledge of how to treat CLL. One that he is particularly proud of is his bringing the old East German drug- bendamustine to the USA.

As he points out in communist Germany, bendamustine was developed in the 1960s to be an inexpensive alkylating agent instead of using the then expensive western drugs such as Cytoxan (cyclophosphamide) or Leukeran (Chlorambucil). Those are both off patent now and dirt cheap for a chemo drug. But ironically, we have Treanda (branded bendamustine), a very pricey child of mustard gas that may have some extra oomph in managing CLL and other hematological disorders. The TATA has become the Ferrari.

A short cautionary note before I share his thoughts and slides.

Chaya Venkat may have been the first and the most public, but not the last in understanding and teaching that there is great localism and nepotism in what treatments for CLL we are offered.

If you go to MDACC, you can bet you will be offered FCR and if you show up at Georgetown, expect to see Bendamustine on your infusion schedule.

That is not a bad thing. I want my doc to be very familiar with all the unfamiliar things that might happen to me with my treatment protocol. I want him or her to feel comfortable and upbeat about the therapeutic choice.

So please take into account Dr. Cheson's understandable pride and enthusiasm for his prodigy drug.

He admits that the data is not there yet, but he thinks it is trending to show that BR may be a better front line therapy that FCR.

Here's why.

More patients can get through a full course of therapy of BR than FCR. When you look at the data on FCR, always check how many make it though a full six cycles.

It is safer in patients with renal insufficiency.

There may be less treatment related ALL and MDS. That would be a very good thing.

He believes that auto-immune issues also will be less and that there is less marrow suppression and fewer infections.

Not everyone agrees.

I will post soon on what I learned in Brooklyn on new CLL therapies and transplants and survivorship.

And on the whole ambience and joy in seeing old friends. They even had good vegan food!

I took the redeye on Jet Blue from Long Beach to JFK and stayed awake on Saturday and got up early on Sunday before flying back home and I am glad that I did.

I think all those years as a medical student and intern and resident and fellow has trained me to get by on little sleep.

And to be always be learning.

Brooklyn, Here I come

Neither rain or thunder or red eye flights or lack of sleep or my own absent mindedness (forgot to take my meds yesterday for only the second time since my diagnosis- talk about being out of touch with the present) or just general travel fatigue can keep me from the Marriott by the Brooklyn Bridge for the North American Educational Forum on Lymphoma in Brooklyn.

It is the right thing to do, I will sleep a bit on the plane, and should sleep well Saturday night at the hotel. so I push on.

Maybe just maybe, I can get to a vegan poorboy sandwich at Blossoms or something more elegant at Candle 19 in Manhattan

Though it would much easier to just walk down the street to Juniors, Bill Clinton's old favorite, for the most amazing cheesecake. Parish the thought.

I will probably just have a salad at the hotel and eat the nuts and snacks I always bring along to ensure I don't go hungry in the badlands of NYC or Peru. The trials of a vegan voyageur.

The symposium will give me a chance to reconnect with old friends, and reinforce critical treatment information as I move forward.

Plus I am looking to develop a second career as a reporter for other primary care health care providers on the cogent material at these specialty conferences. That could be both fun and important work.

Let me share one last reflection on this needlessly tortured decision.

Everything has a cost/benefit ratio. Everything has unknowns in those ratios. You can spend considerable time analyzing and fact gathering to lower the influence of the unknowns and can insure at addition cost against some of the risks, but neither risk or unknowns can ever be fully eliminated from the equation. While this was a relatively trivial decision, it does reflect my process. Here I measured the potential long term upside clearly outweighed the short term risks and costs. And it will be sweet to see old friends.

Same process on an entirely different scale that lead me to an early transplant. And same way I will decide on the timing of the second one.

Look for me in New York.

Before October is over, I will have ridden a mule to the bottom of the Grand Canyon, hiked vortexes in Sedona, and done another one night stand in Dallas.

And somewhere in there I will catch some shuteye.

North American Educational Forum on Lymphoma in Brooklyn

I have had a tough time deciding about whether to take a red eye to Brooklyn for the LRF (Lymphoma Research Foundation) patient conference just because I am so darn tired. The lymphoma folks always cover CLL/SLL as it is classified as a lymphoma. Confusing at first, but the cancer if of the lymph tissue and lymphocytes as it is in all lymphomas.

This educational forum will not likely present anything I haven't already heard or read, but it will review, update and give a fresh prospective.

They will be some fine speakers, but I have heard them all before, and there will be old friends, but there is always next year.

In other words, it will be worthwhile, but I could skip it and survive.

I chose the redeye to save some money. The hotel is expensive. The airfare isn't cheap. It's a lot of hassle, expense, and stress for one night in NYC.

And I am quite sleep deprived already between work and Jewish holidays and other commitments.

But if I can get a good night's sleep tonight, I think I'll go. I have until noon to cancel my hotel reservation, and still get a refund, so I can't delay the decision much longer.

If I do go, I will report on the meeting here.

I plan to not set my alarm tonight and sleep in. That may mean missing the 2nd day of Rosh Hashanah services. I think G-d would understand. She wants to see me rested and healthy.

Services today were challenging and positive. And the shofar blasts were stirring and a call to action, to heal the world, starting by healing myself.