Time for an Update

I realized my last post was in November, 2019. Boy, has the world changed since then. With everything that is going on in the world, my post seems very insignificant in the scheme of things, but there are a couple of important things I would like to share. Most of you would suspect that no news is good news, and you would be correct. In my last post, I reported that they could not find any disease in the multiple tests that they had run over those last 17 months. Last week, they ran another test (Flow Cytometry), which was at the 24 month mark on the clinical trial, and once again they could not find any evidence of disease. End of Short Report.

In my latest test they once again tested a large number of cells. According to the pathology report over 700,000. The exact wording on the report was '<1% in 750,946 events'. So what they are saying is that they could not find any leukemia cells in the sample they took. I guess the <1% means that 'we couldn't say there were NONE', but this is a pretty good indication that even if there are some, it is at such a low level they can't even measure it.

So what this means is unless there are some surprises that happen between now and my doctor's appointment on July 2nd, I will stop one of the two drugs (Venetoclax) that I have been on for 25 months. I will continue to take the Ibrutinib and we will wait to see what happens. Hopefully, I will get a long remission this time before I have to move on to the 'next new thing'.

June the 10th, was actually the 20 year anniversary of my CLL diagnosis. When I look back at this journey, it is hard to believe not only all the changes that have happened in the treatment landscape for CLL , but the changes that have happened with our family during that time. You may not remember, but at my diagnosis, I was given a 5-10 year survival. But more interesting was that NONE of the drugs I am taking now were even in Clinical Trials when I was diagnosed. After a disastrous start to my treatment in the beginning, I was fortunate to have switched to one of the top medical teams in the world for CLL. I can honestly say that without the team at UCSD, I would not be alive today. I have also been very fortunate to have participated in the trials for both of the drugs that I am on now (Ibrutinib and Venetoclax) that happen to be 2 of the most significant drug discoveries in the non-chemo treatment of CLL.

When I was diagnosed, none of our children were married. I wondered if I would ever see that happen, and if I would ever get to see any grandchildren. Last June grandchild #10 was born to our Berkeley son and daughter-in-law, and in February of this year, #11 was born to our Arizona daughter and her husband. How amazing is that?

I continue to participate in the CLL Society support groups, and we have successfully converted all of our 33 in-person support groups to VIRTUAL groups. It is very different than meeting in person, but the good thing is that we can still meet and support each other, even if it is over a Zoom meeting. Personally we are trying to maintain our social distancing, having Zoom parties with family and friends, wearing masks in public, and staying clear of sick people.

Stay safe and be well.