I realized that it has once again been over a year since I posted anything. I guess that is a good thing in some ways, but it really doesn’t mean that nothing is going on. It is like a moving target where I am constantly adjusting my aim. Most of this last year has been pretty uneventful, but during this last week, a number of events have happened to create a Perfect Storm. In my last post I had restarted the drug that I had done so well on the first time. Once again, it worked well keeping me stable for about 5 months, but then my counts started going up again. So, in October of 2022, we dec ..read more

If you have been following my blog you know that I have been on my 3rd Clinical Trial (and 6th treatment) since May of 2018.   I last reported in November that everything seemed to be going well but a couple of things have happened in the last month that have caused me to post now.  In March I had my 10 month CT scan and it showed a remarkable decrease in my lymph nodes.  Because of this, and because my blood numbers had all been in normal range for over 9 months  I asked my doctor if we could run a Flow Cytometry test which tries to find any abnormal (CLL) cells in 1 ..read more

  “I am alive and well and unconcerned about the rumors of my death. But if I were dead, I would be the last to know.” ― Paul McCartney I don’t even know where to begin. My last update and post were in March of 2021.  So, this is NOT going to be a short post, and to those looking forward to that, I apologize.  But before we go on, I want to let everyone know that I am doing fine.  In December of 2020 I stopped one of the two drugs I was taking because I was doing so well.  I was hoping for a long remission.  That lasted exactly 4 months.  In April 2020 t ..read more

It has been 6 months since I started my new trial and yesterday I got the results of how it is going so far.  Based on the CT Scan and the Bone Marrow Report I am doing VERY well.  End of short report. I am going to get a little medical here, but I hope that my explanation will make sense to most people.  If you remember, in January it was determined that even though my numbers weren't off the charts there were indications that my trial medicine (Ibrutinib) that I had been on for 4 1/2 years was just beginning to be less effective than it had been.  Because of my previous ..read more

I can’t believe that it has been almost 9 months since my last update.  So, first things first.  Yes, I am alive, well and still kicking.  End of Short Report. The world is still a very strange place, not at all what we were used to a year ago.  As an immunocompromised patient I have been a little more careful than the general population because the preliminary statistics for CLL patients that are hospitalized, is pretty grim.  Between 25-30% mortality.  Granted this information is from very early in the pandemic and the courses of treatment have changed for the ..read more

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 n ..read more

Update on Progress I just wanted to let everyone know how it is going after 3 weeks into my new clinical trial.  I just have one word as of right now.  WOW!  End of short report. I had pretty high expectations of how I would respond by adding a new drug (Venetoclax) to my previous clinical trial drug (Ibrutinib).  And I was not disappointed.  I know it won't mean much to most people if I throw out numbers, so I will keep it simple.  My counts are all within normal range, and they are the lowest they have been in over 6 years.  All of this has happened while ..read more

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 DISEAS ..read more

Monty Python fans will immediately remember the title of this post, which was a line that they used in their shows when switching from one skit to another.   It appears that I am relapsing on the drug that I am on, and I am going to have to start another treatment protocol.  After an exhausting search I think I have found a treatment that fits the bill.  It is another Clinical Trial at UCSD and will start by the end of the month.  End of short report.  I will warn you ahead of time, the rest is pretty long. It has been 54 months since I started the drug Imbruvic ..read more

I just noticed that it has been about a year since I posted anything and even though everything is still going well, I feel guilty about not keeping everyone up with my status.    I run into people and they ask me, 'I haven't heard anything lately and I was worried.'  Well, no need to worry, I am still hanging in there. When I was originally diagnosed in June of 2000, I was given a 5-10 year life expectancy.  I guess I must have screwed up their survival curves.  On October 29th, I officially passed my 4 year anniversary on the Imbruvica Clinical Trial.  Eve ..read more