Tuesday, June 19, 2012

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.


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.

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Anonymous Anonymous said...

fantastic new Brian , What treatment has you received up to ibrutinib , looking through you have never received chemo is that correct ? Anyway good luck and a great photo .
Stew (cll)
student nurse

June 19, 2012 at 11:08 PM  
Anonymous Anonymous said...

So happy for you Brian. Tremendous news. Deborah x

June 20, 2012 at 2:45 AM  
Blogger Shari said...

I am so happy to read of your positive results! And I relate to your calm and cautious elation. My husband (as you know) had the same response to CAL-101 after completely failing FCR. And his nodes (which were quite large and everywhere) began to shrink within days of his first dose. It has now been over two years on CAL-101 and life is still sweet. We are thankful and optimistic. It's also very exciting that there are variations of these Kinase Inhibitors, which work through different pathways, so that one still has options if a particular drug loses effectiveness at some point in the future. But I am not borrowing trouble from tomorrow. I am savoring today!

It's probably good to under react. But these results of something to be excited about, too!

Wishing you all the best in your CLL journey, your relationships with family and friends, and your travels!

Miss Oblivious : )

June 20, 2012 at 6:09 AM  
Blogger Dragon Slayer said...

I couldn't be happier for you

June 20, 2012 at 7:47 AM  
Anonymous Anonymous said...

Such wonderful news !! And I'm just behind you re PCI .. started two weeks after you and also having remarkable results. My WBC has gone from 342K to 206k in 26 days. Big clump of neck nodes melted away.

All the best to you ..
Lynn S

June 20, 2012 at 10:18 AM  
Blogger Unknown said...

So very great!

June 20, 2012 at 10:51 PM  
Blogger Unknown said...

So very great!

June 20, 2012 at 10:52 PM  
Anonymous Anonymous said...

I was happy to read about your progress in your last blog and am looking forward to the day when you can return full time to your family practice.
I have learned a lot from your "under react" philosophy. Thank you.

June 21, 2012 at 7:23 PM  
Anonymous Anonymous said...

Good news! Alison.

June 22, 2012 at 7:11 AM  
Anonymous TOM B said...

Very good news for you and all that follow along!

June 22, 2012 at 6:56 PM  
Anonymous Anonymous said...

Hi Brian

Great news about ibrutinib. In an earlier post you mentioned some news about 11q deletion . Any chance of an update, please?


June 23, 2012 at 9:13 AM  
Blogger susiegb said...

Congratulations Brian - always so good to hear good/uplifting news ... :)

June 24, 2012 at 7:04 PM  

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