Update on the trial of ofatumumab and Ibrutinib

Friends,

Here is an update on ofatumumab first part of my ibrutnib trial at OSU. I do this for for 5 more weeks the on the 9th week of the trial, I finally get my first taste of ibrutinib (PCI-32765). Can't wait.

Bad news:

I don't have common mouth numbness and tingling after three doses of ofatumumab, but my liver function tests have climbed a bit. The ALT is worst at 98 (almost 3x normal), but the AST and LDH are also up but not even twice normal . These are relatively mild changes and only found this one time. I was screening for hepatitis of course before starting, I don't drink anything stronger than green tea, and I avoid tylenol. Heck, I avoid everything. I am on a ton of meds that can effect the liver, but nothing has changed in years.

Even after my transplant, my liver tests stayed boring, in fact toward the very low end of normal. There was a much smaller rise in only was AST when I returned from China, but that was short lived and was trivial. Hopefully the same adjectives apply to this too. Maybe I don't take well to "foreign " foods.

The package insert doesn't mention it. But there isn't much on the common oral neuropathy either.

Generally side effects in drugs are not discovered until they get used by a lot of sick people.

Hence the morbid joke: Alway use a drug when it' s new while it still works and before we find out all that is wrong with it.

Lab next week's lab with see if it's a nothing blimp or perhaps a trend.

Good news:

Eosinophils are falling, almost back to normal (700). CBC is pretty normal, and the rest of the chemistry panel is good to go.

CLL is one weird disease. Full of blind spots and unexplained good and bad twists and turns.

Very good news:

Nodes are smaller. Definitely not gone, but definitely smaller, and my GI symptoms are better.

Could the tumor kill and the cleansing action of the liver be the cause of the increases in AST, ALT and LDH? My white count was normal going into the trial and still is now.

Any other CLLers seen a bump in the liver tests with ofatumumab?

Disappointingly, I did not get to talk with Dr. Byrd so I don't have his take on this or on some much bigger and impactful issues and decisions that I am facing.

So I am still chewing on it and trying to round its corners as I move forward.

And I keep my mantra going: Under react, Under react, Under react, Under react, Under react, Under react, Under react, Under react, Under react, Under react, Under react, Under react, Under react, Under react, Under react, Under react, Under react, Under react, Under react, Under react, Under react, Under react, Under react, Under react, Under react, Under react, Under react, Under react, Under react, Under react, Under react, Under react, Under react, Under react, Under react.

Slowly and with awareness.

Nice n' easy does it every time (with thanks to BERGMAN, ALAN / BERGMAN, MARILYN / SPENCE, LEW and of course Frank Sinatra).

Please enjoy the linked video. I sure did: the chairman of the board and Gene Kelly together.

Ah, that's better.

Dealing with "this mental roller coaster"

Here is what I believe is an important exchange between me and a friend with CLL.

I think it a critical teaching for anyone in a health crisis, including myself.

I am very grateful to the letter writer for allowing me to pause and formulate a response that I hope helps him and I know helps me.

This is looping around old themes, but sometimes I am a slow learner or I just forget what is important and what is not.

Brian

On a personal note - are you aware of any studies that have been done or help that may be available for those who have been on this mental roller coaster? When on "high alert" the other things of life tend to get shoved aside. Now that the alert level is lower it's as if I don't know how to behave.
The transitions between high alert stages and the low alert stages take too much mental energy. I need to find a middle ground to function in.
Any thoughts?

W

My response:

W

Boy oh boy do I hear you loud and clear. Shifting gears from crisis to normal is tough.

I bet there are studies. I just don't know the data.

If it's overwhelming, see your doc. He can help with counseling or even meds.

But I bet you can by with this plan:

My advice is to under react to everything, the high, the lows.

Don't get too excited by the good news and give yourself time to digest the bad news.

CLL is big actor is life's drama who may try to steal every scene, but it is not the lead performer.You are. You are also the director and the producer. You get to decide who gets the spotlight and the most attention. You can focus on the ones you love and the good works you do and your faith in a greater power and purpose. You can get lost in the joys of trivial pursuits or lofty projects. It's all OK.

You can't control the rascally CLL as much as you would like, but you can control how you react to its hamming it up. Believe me. I am dealing with a few very hard knocks myself these days, and I am just collecting the data, chatting with my friends using my support network of other CLLers and trusted confidants, and cooling my heels before I make a move. Under react.

Trust me on this. This is a great teaching I got from a very dear friend, a doctor who has fought and won a big cancer battle in his life. Under react. Take some time and get some distant. Let things digest. CLL is almost never urgent.

Love is urgent. Family is urgent. CLL is not urgent.

Stay strong

We are in this together

Brian