You Can't Find WHAT?

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 100,000 cells.  So on Wednesday they drew blood and ran the test.  I got the results back from my Clinical Trial Coordinator on Friday, and she told me they could not find ANY CLL cells in my blood.  End of Short Report.

These results have GREAT significance because it is the first time in almost 19 years that this has happened to me.  I have been close a couple of times, but I have never gotten to this level.   We will run another test in a month to make sure this wasn't a fluke, but all indications are that it will be the same.  Another reason why this is significant is because it also gives hope to other patients like me.  I am considered HEAVILY Pre-treated, and I have most of the BAD markers.  All of this means that I am a really tough patient to treat.  People in my situation really are running out of options, and if this continues to work, it will give hope and options to other patients like me.  For me to get to the level of having NO disease is nothing short of amazing and some might say a miracle. 

Now this does not mean I am cured, it just means that right now they cannot find any disease.  It is considered the deepest remission that you can have.  The hope is that this will last a long time.

I continue working with the  CLL Society which is dedicated to helping CLL patients in educating and supporting them in their journeys.   We have now started 31 support groups in the US and one in Canada, and I am proud to say that I have been involved in starting all of these groups.  My personal belief is that you should be your own advocate and the way that you do that is by having the best medical team you can get, by educating yourself as much as you can, and by joining with others that have CLL.    A very close friend of ours was recently diagnosed with CLL and I hope that I was able to provide some useful information to her.  I didn't have that when I was first diagnosed.  I knew NO ONE with CLL and felt like I had to totally depend on my doctor's information.  That is why groups like the CLL Society are so important to create Educated patients that are able to make informed decisions with their medical team and to join a community where people can learn from other patient's experiences.

As Red Skelton used to say (if you don't know who Red Skelton was, look him up)

Good Night and God Bless