Feels like 2010

Last week I had my 9 week appointment for my clinical trial.   I thought that the news was pretty good at the beginning of my trial, but I can say that this appointment pretty much shocked everyone.  Wait for it, wait for it....  My blood numbers are at their lowest point in 8 YEARS.  My physical exam showed no palpable lymph nodes or spleen.  All of this is pretty amazing news.  End of short report.

Although we don't really know the extent of the remission, everything points to my new drug, Venetoclax, working quite well.  There are some unknowns here.  We don't know whether this is the Venetoclax alone doing the work, or has it made my old drug, Ibrutinib, start working again.  We do know the old drug, Ibrutinib, was losing its punch.  All the tests and numbers pointed to it becoming less effective, but there is some anecdotal evidence that  these two drugs, working together, are a one-two punch and it seems that working together they work better than working on their own.  What we do know is this combination is a very fast acting combo.  When I was on my last trial of Ibrutinib alone it took over 2 years to get my blood numbers down to normal range.  With this combo, I got into normal range in ONE week.  Quite a powerful treatment.

In November I will have another CT Scan and Bone Marrow Biopsy that will tell us the depth of my remission.  Right now, all signs are pointing towards a fairly deep remission.

This trial has not been without some minor issues.  It requires a lot of time at UCSD.  I have made 7 visits in 9 weeks.   I am now on a monthly schedule until the end of the year.  Before this trial I had some GI issues, but it seems they are more frequent since I started the trial.  It also seems like I am bruising more easily.  I discussed this with my medical team last week and it may be that my old medicine is working better, and hence more bruising since bleeding / bruising issues because that is one of the main side effects of my old drug.  And I still have not gotten any relief from the horrendous co-pay that I am on the hook for.

I am still patient #1 (and only) in the world on this particular trial.  I was a little concerned that if no one else joins the trial that they would stop it, but my medical team assures me that there are no plans to stop, even if they don't get any more patients. 

I have been interviewed twice  in the last week by people that are putting together CLL information packages for various companies.  I don't mind sharing my journey with people in hopes that it will benefit not only the patients, but the medical community as well.

Terry