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.

Leaving Home

Spending my last few minutes in the big beautiful house where I spent the last 10 years. Where I almost died, and I have lived strong. Where I have hosted one daughter's wedding (in the pouring rain) and attended another's and where two granddaughters were named. Where I mourned the loss of my father. Where I have partied a lot and where I have hurt too much. Where I lived since before my cancer diagnosis and for its whole duration and during my near miraculous remission that has given me new purpose in life (we did move to Ohio for three months for treatment in my clinical trial with ibrutinib). Where I grew my raw vegan teeth and was spoiled by organic food from our garden. From where I drove to attend the LA Kings winning their first Stanley Cup. Where I have had some wonderful neighbors and some not so great. Where a million friends have visited at good and bad times. Where I have loved and laughed and had an amazing time.

So many memories.

So many challenges.

So many blessings.

I am ready for a new adventure.

A new launching pad.

Life is good.

Next post will be from my downsized apartment, what my friend Todd calls the hatchery due to its necessarily stripped down nature.

My internet connection should up again tomorrow, but I am off early in the morning to Philadelphia to speak in front of a hundred lawyers that work for Janssen about the patients' perspective with CLL.

Who would have thought when I has diagnosed eight years ago that all this and more would come to pass?

CLL: Eight years and counting

"The whole world is a very narrow bridge. The important thing is not be afraid."

Rabbi Nachman of Breslov

Walking 30 feet up on a telephone pole at the Cancer Advocate Leadership Conference at Miraval

Thank you Escape and Bag It

It was eight years ago on September 7th, 2005 that I received the lab results that changed my life forever and was handed the diagnosis of the incurable (and soon after the added adjectives of aggressive and complex) chronic lymphocytic leukemia.

I have riffed on these anniversaries before, but this one almost passed me by un-noted.

Why? Because recently my focus has shifted from my personal struggles to my efforts to increase awareness of how CLL therapy is changing.

Yes, my personal future is still unclear. Yes, my CLL is still hanging out in my mesenteric nodes and a small percentage of my marrow. Yes, it has evolved into a nastier dance partner over the eight years of this waltz. No, I am not cured, just very well controlled.

Though I would obviously prefer to get off the dance floor once and for all, or at least have a more benign partner who is not always trying to trip me up, I am just fine with living with a well mannered cancer. Fine enough to spend more of my energies in shining a light that might guide others to similar happy outcomes. Fine enough to teach and advocate and support.

I am in the process of putting together my non-profit and working with other not for profits to move forward on the mission of smarter care for all those with CLL and related B cell cancers.

Of course, when I was at XViwCLL 2013 in Cologne last week, I paid close attention to the news and research that might impact my health personally. But the bulk of my efforts in Germany were outward. Please understand that that is not an entirely selfless or strictly altruistic act, but as many have argued before me, a recognition of how much healthier it makes me to share and spread my good fortune. It is so much better for me personally to look to the needs of the whole CLL community as well as my own.

So I almost missed my "anniversary" because my focus was on the future, not the past.

Stay strong.

We are all in this together.

I am moving later  this week, so my posts may be a bit more sporadic over the next weeks or so.

XV iwCLL 2013: Interview with Dr. Castro on the Biology of CLL

My long time friend and crusader, Dr. Januario Castro, who works with Dr. Kipps at UCSD, besides caring for CLL and transplant patients, is doing important research into the basic biology of CLL.

He covers some of the novel bench science presented at the first morning in Cologne, Germany for iwCLL 2013.

Before you dismiss this as not being clinically relevant, I humbly suggest you that spend the ten minutes to listen to Dr. Castro making the biology easily accessed and digested. More than that, he points out some of the lingering challenges still facing CLL therapy.

Without this basic research on cancer cell biology, we could not have the amazing progress we have seen in the last few years. As Dr. Jeff Sharman said in a prior interview, the therapies explode when you crack the biology. Without the novel understandings of what is happening in CLL, we would be still be talking only about old school chemotherapy.

In this interview, first Dr. Castro is honest about what we know and don't know about clonal evolution. Next he outlines what was a recurrent theme at the conference, the important regulatory role of very small pieces of RNA called micro or mRNA. Turns out that much of our DNA is busy doing much more than just making proteins. Finally he talks about his own research that he presented on the versatility of the CLL cell, and how he hope to limit its options.



Thanks, Dr. Castro.

So much to share. I will be revisiting some of these same themes to expose some of the controversy and different takes on the same data.

 Stay tuned. A total of ten doctors interviewed over the three days.

iwCLL 2013: Home At Last

This could almost be a tweet: 29 hours of walks, trains, planes, and cars and we are finally home from Cologne, tired, hungry, happy and hopeful.

It is good to be home.

iwCLL2013: Day 3 Heading Home Tomorrow Full of Hope and New Knowledge

The schedule at iwCLL 2013, Cologne, Germany has been exhausting but most hopeful.

My son and I completed interviews with ten different CLL specialists and I attended almost every hour of the three days of presentations.

More details to follow, but the bottom line take away message from the conference is that the future is bright for those of CLL, there are many reasons to be optimistic, and there is still much work to be done.

The CLL treatment landscape is changing in good ways that were unimaginable just two years, and truth be told, some doctors are quicker to embrace the seismic shifts associated with the novel therapies while others are still clinging to the old tried and true stalwarts of the past.

Expects some commentaries and videos over the next several weeks to explore this and many other topics.

We have a ton of post production work to do over the next several weeks and I have a ton of sleep to catch up on.

Next post when I am back in the USA.

And by the way, iwCLL will be in Sydney, Australia next year.

iwCLL 2013: Day One

So far iwCLL 2013 has been a very cutting edge and bench science driven conference. Great stuff, but not easy stuff to digest.

Tomorrow that changes with more "clinical" presentations.

I need to sleep and not blog, but expect video interviews when I get home from three of the speakers today: George Calin on micro-RNA, Juan Castro on the micro-environment, and Jan Burger on a review of all the mid morning presentations.

This is important stuff we patients need to understand and the doctors that I interviewed do a great job of making it accessible. This is the basic science that molds the future of therapy that they are discussing.

Spent hours reviewing the many excellent poster presentations.

One tidbit: Notch1 and 11q del may be mutually exclusive. Who knew?

My brain is exploding. So much new information.

I will try to hold your hand as I share over the next several weeks all that I have discovered here in Cologne on day one.

Met many old friends and made some new ones. Working hard on some patient advocacy plans with some of the people here. Stay tuned.

Tomorrow looks to be just as busy or busier with at least three interviews lined up, but everything changes at the last minute.

But my son and I will make the time to get out of the conference center and see the famous cathedral before we leave. That is a must. It is only a short walk (in the rain) from our hotel.

But first I must sleep.

iwCLL 2013: Live from Cologne: The Opening Ceremony and Reception

Let me just say that this is going to an amazing conference. An Cologne is old worldly and charming, though vegan food will be a challenge. I am hoping I can find some time to wander the cobblestone streets and visit the Gothic cathedral. It was the tallest building in the word until the Eiffel tower was erected. And it took over 600 years to complete, started in the 1200s.

This is going to be a small but very concentrated conference on one subject only: CLL.

How concentrated?

In one row, attending the opening ceremony was Peter Hillmen, Kanti Rai, Carlos Croce, and Tom Kipps.

Talk about the who's who.

I heard about when to stop FCR (maybe sooner than 6 courses in MRD negative), epigenetics and some surprising and competing theories on clonal evolution, immune therapies, patient friendly clinical trial and this was all at the reception and opening ceremonies, which is not the scientific part of the meeting.

I got to get some sleep for a big day tomorrow.

 Michael Hallek Welcoming US to iwCLL 2013

 Professor Hallek and me

The reception (no vegan snacks, but I did enjoy a taste of the local beer, made only in Cologne)

First We Take Berlin

 The powerful and haunting wordless Memorial to the Murdered Jews of Europe

The symbol of Berlin, in victory and in peace, divided and unified, the Brandenburg Gate

Shana Tova to all my Jewish friends.

I enjoyed a (Hebrew/German with a few words and the page numbers in English) New Year service at the New Synagogue in Berlin. It was both friendly and familiar.

In fact, my son and I are having a totally friendly and amazing time in Berlin in preparation and for jet lag accommodation before IWCLL in Cologne.  Interview times with Dr. Kipps, Hallek, and Pagel are confirmed.

What I haven't done is hang out much on the internet, which is a good thing.

Except for very sore knees and feet from hours and hours of walking, it has been uber wonder filled.

Great live jazz, good vegan food, helpful strangers, easy public transport in and between cities on subways and trains, tours of the city above and yes, air raid shelters below the ground. The museum collections we have seen exceed London or Manhattan. The street art and life sure do.

That's all for me now. More from the conference in a few days.