Disappointing, but not unexpected
Terry's CLL Journey
by Terry's CLL Journey
2d ago
Even though I usually post about relapsing on my treatment for CLL, this Blog update will be a little different because my CLL is doing just fine.  However, my prostate cancer has decided it wants to get into the treatment game.  When I last reported about my Prostate journey, I had just had a PET scan which showed 3 areas of concerns.  That was followed up by an MRI.  Using those two tests I finally had my appointment with my urologist at City of Hope on Friday and after some explanation and showing me the PET and MRI results, we have decided that it is time to begin treat ..read more
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Little did I know...
Terry's CLL Journey
by Terry's CLL Journey
3M ago
That over 16 years ago when I started my blog, I would still be posting updates on not only one cancer but two.  My posts have become less frequent because there are long periods of time where there is not much to report even though I am still having frequent doctor visits and things may move around slightly.  But I really don’t think it is of much interest to have me report, ‘I pulled my hamstring and can’t play golf for a couple of weeks’ (This is for my kids, who will be the only ones who will get this joke ?) In my last post, I was wondering what I was going to do with my CLL as ..read more
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A Perfect Storm
Terry's CLL Journey
by Terry's CLL Journey
10M ago
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
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You Can't Find WHAT?
Terry's CLL Journey
by Terry's CLL Journey
2y ago
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
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It's Been a While
Terry's CLL Journey
by Terry's CLL Journey
2y ago
  “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
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The Results are IN!
Terry's CLL Journey
by Terry's CLL Journey
2y ago
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
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Time Flies When You are Having Fun (or NOT!)
Terry's CLL Journey
by Terry's CLL Journey
2y ago
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
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Time for an Update
Terry's CLL Journey
by Terry's CLL Journey
2y ago
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
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Moving Right Along
Terry's CLL Journey
by Terry's CLL Journey
2y ago
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
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And Now for Something Entirely Different!
Terry's CLL Journey
by Terry's CLL Journey
2y ago
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
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