Report from my Scans and Lab at OSU

I am back home at last after a whirlwind tour of three states in five days.

My trip to Columbus for my OSU clinic visit at the James Hospital was enhanced by the hospitality of some new friends. The husband is also a CLL patient of Dr. Byrd and is enjoying an enduring and deep remission and who had his clinic appointment within twenty minutes of mine.

While waiting, I met a few people who teased me about my over sized poster in the lobby of the James, and a wife who insisted I meet her husband. Honestly I was touched when he told me that it was because of this blog that he drove from Kansas for the ibrutinib trial. He too is doing well with shrinking nodes and no ill effects.

For me, the news was good. All my blood tests were essentially within normal limits. My red and white blood cells and my platelets, my liver and kidney function and my electrolytes were all once again boring.

My scans showed stable disease. So after dramatic shrinking of my nodes over the first two scans in the first six months, there has been almost no change in the last nine months.

While my axillary nodes all shrank from three months ago, some significantly, and all my lymph nodes are a bit smaller than on the scan done last October, the actually measurements of my three index gut nodes were one mm bigger this time than than three months ago.

Since my whole GI tract was churning from the oral contrast (and is only now starting to recover), a one millimeter difference may be easily explained by the twisting of the gut, though radiologists usually choose to measure the index lymph nodes that are stabilized by their proximity to a major vein and less prone to changes in orientation.

Still one millimeter means nothing. In fact the summary says my nodes don't even meet the criteria for adenopathy (abnormal nodes). I can't agree with that cheery reading as I have one portal caval node that drains the liver that is 4 x 0.7 cm and that's an abnormally big node. None of the others are > 2 cm.

But they also say they are stable. If a patient, asked me about a one millimeter increase, I would offer them  my heartfelt reassurance that it meant nothing and was within the margin of error of the technology and the imperfect humans measuring them.

And that is what the radiologist stated. And they are famously over zealous in their reporting to avoid being blamed (and/or sued) for missing something, so I too am reassured.

Dr. Byrd advised that he sees this pattern of stable lymph nodes in many patients on ibrutinib and the nodes may start to shrink again in year two to three.

And of course, the report offers the added benefit that my every 84 day scanning surveillance has turned up nothing else suspicious in my thorax or abdomen or pelvis. No secondary cancers. Others have not been so fortunate.

I wish the nodes were all smaller. I wish they were all less that one centimeter, but I will take stable.

Patience.

Patience.

Next scan is not for six full months! That too is good news. I am nearly over the highest risk time for the very small risk of late relapse.

All in all, except for the mild gastric distress from the contrast media for the scan, a flash flood warning, and multiple delayed flights coming and going, a very good visit to Columbus.

I am happy and have much more exciting CLL news to share. More videos soon from ASCO.

Hope to get to report from the iwCLL workshop in Cologne, Germany and am definitely going to the LRF in Brooklyn, both in September.