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.

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.

Good news on Ibrutinib

The day has slipped away and I am flying home ridiculously early tomorrow morning for a quick visit to the kids and the cat, before returning here for another two weekly checkups

So I will be brief, but  Ipromised an update.

The magic keeps happening.

My subjective feel that my nodes were shrinking was confirmed by the exam today. Really no nodes bigger than 1 x 1 cm. That is amazing after only two weeks of ibrutinib. Sore were 5 x3 a few weeks ago.

Lab showed a normal WBC and ALC so I did not get the big bump up that many see in other cohorts, but that might be because of the ofatumumub. It hangs around for a long time and may be preying on those hapless lymphocytes unprotected by the "microenvironment" when floating in my blood stream. No-one seems worried, so I won't either.A rise in ALC doesn't seem to predict response

Platelets remain above 400,000.  My ITP is in deep retreat.

The only fly in the ointment is that my Hgb has drifted down a bit to 12.9 which is the lowest it has been in years. BTK is found in reticulocytes, but my retic count was good. Ofatumumab can occasionally cause anemia. I will watch the trend. In blood tests and stocks, it's the trend that counts.

Gotta crash. More from SoCal soon.

Home Again

No plane trips for a while, just a mule trip up and down the south rim of the Grand Canyon in a few weeks.

I need to sleep and then will happily share what I learnt and didn't in Brooklyn

Home Sweet Home

After a week in Peru, and 4 days in Charm City (Baltimore), I am finally home in southern California.

Home prepared (notice I did not say cooked) raw meals and juices, my own bed and shower and kitchen table.

And my wife and kids (well the kids are a call or Skype away).

Life is sweet.

Trying to decide whether to trek cross country this weekend for a leukemia conference in Brooklyn. I am booked on a red eye to save the considerable expense of an extra night at the very nice NYC conference hotel.

So tired, but I really think it could be a wonderful meeting. Full of new knowledge and old friends.

I am good at the exercise, very good at the diet, nearly perfect at avoiding the toxins, but I stink when it comes to having a healthy sleep pattern.

Home again to stay

13 of the last 18 days I have been on the road, or more correctly, in the air.

That was four cities for an equal number of lectures to nearly 2000 doctors and other healthcare professionals on migraines. I am happy to report that I was well received and well reviewed. I told them all of my CLL and transplant to bring home the message that we doctors can develop expertise in any new clinical area if we are sufficiently motivated.

It was six different art museums in New York, Pittsburgh, Baltimore and Chicago.  The Yousef Karsh portraits in the basement of the Art Institute of Chicago was the show stopper. His photos define iconic. The Einstein, the Shaw, the Churchill, the Ali, the Bogart, the Crawford....the list is too long. Don't miss it. Mind you, the circus show at the Baltimore Museum of Art was pretty great too. And I mustn't forget the floating balloons at the Warhol or the theater painting by a very young Chagal at the Jewish.

It was blocks and blocks of walking in the cold, and buses and subways and cabs and a few limos back and forth from the airports.

It was seeing some old friends and meeting some new ones. It was visiting two of my children. It was eating vegan or raw by bringing food with me or traveling long distances from my hotel to find my kind of food.  It was some astounding feast and some pretty bland feedings.  Add Karyn's Cooked to my list of great diners in Shytown. Thank you again http://www.happycow.net/

It was two excellent doctors visits.

It was great to get home last night and know that I won't be flying again for three weeks.