It's Always Something: Latest Lab Results Bring the Unexpected in my CLL (chronic lymphocytic leukemia)

Every seven weeks or so, I go to the cancer center associated with St. Jude in Fullerton, CA for my IVIG (intravenous immune globulins) infusion to keep my platelets nice and normal following my years of ITP (an auto-immune destruction of my platelets). And to enjoy the side benefit of preventing some infections and the chance to monitor my labs.

I always have blood drawn before the infusion. The CBC is back almost instantly and was nearly normal. My absolute lymphs were 1.6 which is high for me, but very normal and my platelets were a bit high due to prior splenectomy. No anemia or other concerns. Basically all good news.

The next morning (now),  I get my blood chemistries back. My LDH had been slowly climbing at Ohio State but was rock stable at my local lab. YEAH, as LDH can be a sign of cancer reviving up. Mu uric acid was normal but had climbed up a tad.

Bood sugar and kidneys tests were all good and my proteins were their usual minimally low due to my lack of making decent amounts of immunoglobulins, but the surprise was my markers of liver injury (AST and ALT) that have been reliably very low and healthy were unexpectedly slightly elevated. Two other liver tests that are raised when the liver ducts are obstructed were normal.

Liver tests show up at the bottom of the page of the comprehensive metabolic panel (CMP)print out, so I almost didn't scroll down to the bottom of my computer to see them as they have been my faithful and reassuring marker of normalcy for all my years with CLL. One touchstone of stability that I attribute in part to my healthy plant based lifestyle.

Ironically I rely on this very blog to jog my memory and it reminds of two forgotten times that my liver enzymes were high before: they were the worst when I first started on this trial almost 4 years ago and was getting the anti CD-20 antibody ofatuzumab, and again briefly after I returned from a cold and grueling trip to China in the winter of 2011. They soon normalized in both incidences.

This uptick today is vey slight. I don't drink alcohol and have no high risk behaviors.  In the past, I have screened negative for hepatitis A, B, and C.

I did just started CoQ-10 from my dentist and that, in doses three times what I am taking, can cause this exact issue.

I have recently recovered from a violent vomiting and diarrhea episode that was likely norovirus. It was raging through the local elementary school and senior housing. That nasty bug (a common cruise ship spoiler) can rarely cause acute severe liver inflammation, but my GI issues were gone two weeks ago.

Of course my white knight, ibrutinib itself, could be the culprit, even after more than 3 years, but that too is unlikely. IMBRUVICA  usually leaves the liver alone. And that too is good.

So no obvious villain to blame. And I feel just fine.

My plan is to advise Dr. Byrd, stop the CoQ-10 and not sip any champagne tonight.  Easy stuff.

And recheck levels in 7 weeks when I next get my IVIG.

Because the trend is my friend,  I refuse to worry about one lab blip. But that doesn't mean I won't do what I can to research and prevent the trend from moving in the wrong direction.

Take a look at our latest new letter on the CLL Society website, sign up for our alerts. They will be fast and furious in 2016 so you don't want to miss out.

2016 will be an amazing year for those of battling CLL.

Stay strong.

We are all in this together.

Happy New Year to all.

Good News on the Home Front and Sad News at the Hospital

I have managed to stay out of the infusion center where I get my IVIG for a full five weeks and my lab results today were great.

My hemoglobin was the highest it has been in years (14.7) and finally well within the normal range, my platelets were over 400,000 and my ALC was about 1.3 and my WBC around 10.

Maybe it was my wife's Cajun gingerbread with all that blackstrap molasses boosting my iron while my ibrutinib controls my disease and keeps my counts in check, and my cyclosporin and IVIG shut down my ITP.

Whatever it is, it is good news.

As I have preached before, I mustn't get too excited by one blood count. It is the trend that matter. And for my mental health, it is best to smooth out the high and lows, but I wanted share this piece of good news before I head off to ASCO 2103.

With these encouraging results, I am now planning to stretch out my IVIG infusions to every six weeks with my doctor's blessing.  Not so long ago it was every three weeks that I was getting poked and infused. My veins are most thankful for the respite.

On a much more tragic note, last week I lost a colleague, a compassionate and talented surgeon from my local hospital with whom I had worked for decades. He had chosen to keep his CLL and other blood issues more private. We shared many confidence about our battles and I will miss him and the life he gave back to many of our mutual patients though his skilled interventions. 

His last few months were very difficult. Rest in peace, my friend.

This is a cancer that still plays for keeps. It picks no favorites. 

We need to decide wisely on our therapies. We need to get these new drugs to market soon. There are lives in the balance.