Wednesday, January 2, 2013

My Latest Lab- All Good

I still am a patient. I still get IVs. The nurses still blow the occasional vein. I still get enough blood drawn to decorate the set of a slasher movie. I still sit in the infusion chairs for hours every 4-5 weeks to get my IVIG. I still fly to Ohio every 3-4 weeks to pick up my ibrutinib, and when I get there I still get poked and prodded. I still get CT scans every 90 days, and bone marrow biopsies at least one a year.

I still need to protect my veins and my kidneys and liver from all the various medical ministrations that I receive so often.

I still worry about what the tests will show, despite my best efforts to do the Zen thing and detach. It's because I have just seen too many CLL friends on cruise control, get kicked in the teeth by a surprise finding. MDS, Richter's, a secondary cancer, a heart tissue, a sudden massive drop in hemoglobin or their platelets or neutrophils, or huge bump up in their lymphocyte count.

Today I talked to a long time friend who was in remission for six healthy happy years after minimal therapy (very little chemo which was quickly stopped due to side effects, mostly rituximab), and after a wonderful and vigorous vacation that including surfing and scuba on the other side of the world, came back feeling just fine, only to pass out at home, wake up to big bruises, single digit platelets, missing in action neutrophils, and a hemoglobin in the sevens.

CLL can do that. The Grateful Dead in the lyrics of Uncle John's Band nailed it: "'cause when life looks like Easy Street, there's danger at your door."

Maybe the story will be different with ibrutinib, GS1101, and ABT-199. Their mechanism of action is so different from traditional cytotoxic chemo-immunotherapy, there is good reason to believe that they will alter the national history of the disease and how it might relapse. Maybe in the future, we won't get blindsided by an out of nowhere cancer coming back to get us, like some psychopath seeking revenge.

But that is a tale yet to be told.

I would prefer to just be an objective reporter, bringing from ASH and beyond, the news, good and bad on CLL and its cousins and complications, but I have skin in the game.

That is the tap root of this blog. For me, CLL is personal. I am involved and passionate about CLL because I have CLL.

Right now, the general news from ASH is good, but the personal news from my infusion chair is even better.

WBC            8.6
Hgb             14.0
Platelets      390
ANC            5.8
ALC             1.2

That's pretty darn normal. Hasn't looked this good in years.

And I pretty darn happy.

A good way to start to the new year.

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Anonymous Janet Morrison said...

Your labs are looking marvelous. Good for you!

January 2, 2013 at 2:20 PM  
Anonymous Anonymous said...

Hi Brian

Your results look great. What were t hey before you started the trial? Also, what are the side effects of ibrutinub and have you had to stop anything ie alcohol?

Finally, what sort of things do you do to prevent cruise control?



January 2, 2013 at 2:58 PM  
Blogger Brian Koffman said...

Hi Bill,

My labs have never been my biggest problem, just my enlarged nodes. My Hgb was around 12 grams. Little other changes, but the nodes are >50% smaller.
I don't drink, but believe small amounts of alcohol are safe with ibrutinib.

Cruise control? It is good to be aware, so I try to bring that mindfulness to the front of my consciousness. It is also good not to worry, so a little cruise control can be helpful.

Stay strong.


January 2, 2013 at 10:04 PM  
Anonymous Anonymous said...

Hi Brian. Great to see you're doing so well. My lymph nodes are out of control and a year after diagnosis am starting FCR next week as ALC is now doubling monthly. So sad that in can't wait for a chemo naive BTK inhibitor trial. Inbrutinib has just arrived in Australia in Stage 3 trials for relapsed and refractory. I've just had another BMB to retest FISH before starting chemo. I got a year of health I wasn't expecting but amazed by how quickly things can start spiralling with this. As I'm 39 I'm being closely monitored by the transplant team and my sister is a perfect match so I suspect an allogeneic transplant might be on the cards sooner rather than later depending on what happens with the FCR. Here's wishing us all a happy and healthy New Year with many thanks to all those scientists and doctors working so hard to make this a more manageable disease and to those such as you who are educating us about it. Best wishes, Deborah in Melbourne

January 3, 2013 at 8:13 AM  
Anonymous said...

Wonderful news.......let's just get the nodes down a little more!

Happy New Year Dr. K.

January 3, 2013 at 8:49 AM  
Anonymous Anonymous said...

A fantastic way to start the new year! I'm incredibly happy for you.

Brenda breeland

January 3, 2013 at 7:54 PM  
Anonymous Anonymous said...

There has been no mention of GA101 for a while. Is Obinutuzumab not in play anymore?

January 3, 2013 at 10:30 PM  
Blogger Brian Koffman said...

Little on GS101 at ASH. ASH 2013 is rumored to be the big year for it.

January 4, 2013 at 1:09 AM  
Anonymous Anonymous said...

Hi Brian,

Great lab results and long may they stay that way. Thank you for posting your interview with Dr. Pagel. Yours is the second interview with Dr Pagel that I've seen and I have to say, on both occasions, I've found them fascinating and even quite emotional. I was diagnosed in my mid 40s and have thought up until recently that my fate would ultimately be a stem cell transplant. I am hopeful now that, by the time I fall out of remission from FCR, one or all of these new drugs will be available to me in the UK.

January 4, 2013 at 1:49 AM  
Blogger Unknown said...

Sounds scary... I am not thrilled about embarking on this journey myself.
I'm glad you are getting better though!

January 4, 2013 at 6:08 AM  
Blogger Unknown said...

Sounds scary... I'm not excited about embarking on this journey myself. Glad you are getting well!

January 4, 2013 at 6:09 AM  
Anonymous Deb Light said...

Great Labs and Happy New Year.Yes,our CLL can change in the blink of an eye so we have to always be proactive and attentive to our symptons.Thanks for the update and keep up the good work and great counts!

God Bless,
Deb Light

January 5, 2013 at 2:21 PM  
Anonymous Anonymous said...

Your posts are an inspiration to others that are facing this disease. Hopefully, they can do this with other cancers some day. That's what we all hope for is a "Cure for cancer".

January 5, 2013 at 2:50 PM  

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