CLL Support Group on July 3, 2013 at 4 PM at the Moore Cancer Center

Please join me tomorrow at UCSD at 4 PM on the 2nd floor of the Moore Cancer Center in the "Commons" for my talk to the CLL support group based on my experience as a doctor turned patient dealing with cancer.

I plan to start with a brief overview of CLL, discussing in general terms diagnosis, lab tests, prognostic factors, symptoms, complications, management, and how treatment is changing. The last half of my talk will be about my personal experiences as a patient ending with my participation in OSU clinical trial with ibrutinib.

It will feature video clips from my interviews with Drs Kipps, Wiestner, Byrd and Pagel at past ASH meetings.

After my 45 minutes, we all have a chance to meet and exchange stories and information.

Hope you can make it.

OSU Update: All Good

I left sunny warm SoCal for cold and snowy Columbus, Ohio, but it was so worth it.

Labs remains stable with essentially normal red blood cells, white blood cells and platelet counts and differential, and boring blood chemistries.  Despite an small audience of student nurses, my bone marrow biopsy went well. It's harder to whine when it hurts if you have aspiring members of the healthcare team staring at your bottom and diligently taking notes. So let me take this opportunity in the privacy of my guest room to say OUCH now.

Results are weeks away.

Dr. Byrd is very happy with my progress, feels the slowed nodal shrinkage noted on my most recent CT scans last month is not a concern in anyway, and I am on a good trajectory.

After my clinic visit and biopsy, I had another interview and photo shoot with their very down to earth and professional marketing team at the James Hospital. This time I am really going to be the poster boy displayed smiling on 8 x 2 feet banners throughout the hospital and possibly at international meetings to promote the hematology and lymphoma clinical trials at OSU. It's a cause that I can fully endorse. As we have heard before, there has never be a better or more important time for a CLL patient to consider a clinical trial and OSU should be high on our list.

This modicum of "fame" allows me to join the ranks of my friend Terry in our local CLL support group who is already the international face and voice of RITUXAN. If this stardom trend continues for our members, our little OC group might need to have its own reality TV show soon.

Insurance issues are on track to be worked out quickly thanks to the hard work and co-ordinated efforts of several folks at OSU and Blue Shield of California today so I am happily leaving town tomorrow informed and consented and officially rolled over into the new continuation trial with a full 84 days of ibrutinib. Yeah. Goodbye Columbus for 12 full weeks.

Hard to believe it's been a year since I first started in this trial, and now that phase of my life has ended.

The next time I am back at OSU at the end of April, spring will be in the air and Dr. Byrd has promised me a much coveted tour of his lab. The marketing team says they may video or shoot photos for my blog- wouldn't that be sweet?

It's been hectic. Despite my nerves about presenting to a "specialists" audience, my lecture on sleep disturbed breathing and heart failure at UCSD last weekend went over well and now I am feverishly preparing my next lecture for the Nation Sleep Foundation in Washington due on Friday.

Life is crazy, but good.

A Personal Note: My Good News on Ibrutinib

Let me get personal here.

While I believe with all my soul that we are all in this together and I celebrate every move forward as exemplified by the amazing 100% overall response rate of the first cohort in my clinical trials presented in the interim reports on ibrutinib (PCI-32765) at the annual 2012 ASCO (American Society of Clinical Oncology), let me now share my personal good news.

My "n" is one, not statistically significant, but personally critical.

After only one cycle of four weeks of ibrutinib, my CT scan of my thorax, abdomen and pelvis showed that all my lymph nodes had significantly shrunk.

Yahoo.

Some details: Here is what happened to my biggest honkin' mesenteric node left in my belly. It is now measuring 2.5 x 5.8 cm compared to 3.2 x 8.9 cm when I rolled into Ohio to start the trial, a dramatic reduction of about 50% in area and certainly more in volume.

Other nodes have shrunk even more, and they have shrunk everywhere - the pelvis, the gut, near the liver and the blood vessels, and in the axillae (armpits).

Now it is possible that ofatumumab may have played some small role in reducing my tumor burden as my baseline CT scan was done before I started my infusions of that antibody, but if I make the logical but unproven assumption that what was happening to my palpable nodes was being mimicked by what was happening inside, then ibrutinib did the lion's share of the clearing out the cancer. My neck and axillary nodes changed little on the OFA.

But add the ibrutinib, and one formerly huge internal nodes that was 10.1 cm is now a petite 3.3 cm.

And all this in only four weeks, with almost no side effects and nearly normal labs and improved energy.

I harbor no illusions. A persistent 5.8 cm lymph node is still a nasty thing, but I also have no reason to doubt that it and its buddies will soon to be shadows of their former bulky selves. My palpable nodes are certainly continuing to get smaller and smaller.

What I know now for sure is that I have had a profound and deep response, despite my two evil complex clones, despite my failed transplant, despite my new small batch of 17p deleted cancer cells, despite the immaturity of my clone being unmutated and the chattiness of it being CD38 and ZAP 70 positive, and despite just about every bad marker.

This is the best news.

How deep and durable my response will be is my next challenge, but for now there is much to quietly celebrate and good cause to be optimistic.

So I under react, stay both calm and hopeful and move forward.

It has been wonderful to be home for a few weeks with my family and friends and patients and cat and the Pacific Ocean.

This weekend, I am off to Houston to lecture on CLL, transplants and anemia. The weekend after is Dallas, then back to OSU for more lab and to pick up 28 more days of ibrutinib.

Life is sweet.

Las Vegas, Valley of Fire, CLL lecture

Arch at Valley of Fire State Park 50 miles outside of Las Vegas

Been in Las Vegas to lecture for continuing medical education (CME). Staying at the Vdara which is a non smoking hotel with no casino.

That part is good. I can even find organic raw and vegan food.

But Vegas is crazy and crowded with falling down drunk people. The traffic is ludicrous. The prices are incredible. The lights and noise are overwhelming. Last night it took 45 minutes to drive two blocks because Kaskade was DJing at the hotel next door. Don't tell me your don't know who Kaskae is? The short tight black club dresses that everyone and I mean everyone is wearing make the 60s mini skirt looks like a nun's habit.

I so feel that I don't belong here. Am I getting old or what?

But there is a lovely view from the 51st floor of the fountains at the Bellagio and the drives to the amazing red rock parks nearby has made the trip. I love the desert. So calm and quiet and austere.

By the end of June I will have lectured to well over a 1000 primary care providers on CLL and its emerging therapies.

My lecture here was focused on what a primary care provider needs to know about CLL to best care for his patients. I also want the audience to know how the future of CLL in particular, cancer  in general, and medicine universally is moving away from blunt therapies such as chemo and towards targeted treatment such as ibrutinib.

I was pleasantly surprised by the strong level of interest in the topic by healthcare professionals whose roles may often be more supportive in treating these patients.

I am continuing to do well on my ibrutinib- mild gut issues, but shrinking nodes.

Tomorrow I will be in Ohio meeting with some dear CLL friends who will driving in from the east.

Soon I will blog more on how I see ibrutinib fitting in the world of CLL therapy and will post an update after my Tuesday clinic visit.