A Milestone!!

I just realized that it has been 6 months since I last posted an update, and I guess I need to share some greatly anticipated news.  If you have been following my journey (blog) for a while you might remember that I entered my 3rd clinical trial in May of 2018.  Even though the initial results were very promising, there needed to be one more test to determine how well I was actually doing.  So in mid October, they did a bone marrow biopsy to determine how deep the remission actually was.  I have since gotten the results of this test, and THEY CAN FIND NO EVIDENCE OF DISEASE.  End of short report (you know who you are).

This confirmed two previous tests that they had run but with much greater accuracy.  The test is looking for one cell in 100,000, but if I read the report correctly, they actually tested over 434,000 cells.  Don't ask me how they do this, it is way beyond my pay grade.  This does not mean I am CURED, but what it means is that in the area they evaluated they could find no disease.  If they can't find any disease in the bone marrow (called  Minimal Residual Disease Undetected (MRD-) it has been shown that you will probably have a longer remission.  Cancer is a pretty sneaky disease.  It can hide out in places they can't test, it can mutate, so it goes around the pathways that are being blocked by the medicine, or it can decide to change into something else.  I am not naive enough to think that I'm over all of this, but I will say that this is the FIRST time in over 19 years that they are unable to find any disease.  I still continue to look at possible next steps, if and when I relapse once again.

The question now is what do we do?  Remember, I am on two pretty powerful medicines, so we could stop one of them (which one, I am not sure), we could stop both of them, or we could do nothing and keep taking both of them.  I have an appointment in mid November to try to figure some of this out, but I doubt we will come up with an answer at that time.  All of these scenarios  have a lot of unknowns associated with them.  That is why it is a Clinical Trial.  To be honest, they just don't know yet.

All in all, I have been feeling pretty well.  A few nagging side effects, but I deal with them, plus, they may or may not be caused by the medicines.  Feeling well has allowed us to do some traveling.  We have visited our kids who live out of the area, and had a couple of big trips, one to Israel, and one to Kauai.   We are looking forward to Christmas, when all 10 of our grandchildren and their parents will be around to celebrate the holidays.  I am still doing work for the non-profit, the CLL Society, and still lead the Orange County support group.  I have also been asked to do some speaking for another group, and should start that after the first of the year.  I hope sharing my story in some small way, helps others who are dealing with CLL.

I am truly a Blessed man.

Terry