Happy 4th of July

On Tuesday I went for my 9 month visit being on Imbruvica.  My blood numbers continue moving in the right direction and I am looking at continued success in the future.  My WBC (white blood count) is now down to 19K (normal is between 5-10K).  My WBC was 60K when I started and I am still trending downward even though it is at a slow pace.  After I had my blood test and physical exam I once again got a 90 day supply, which is the most they will give me at any one time.  I still have to pick up the drugs from the pharmacy at Moores Cancer Center.  This time I remembered to pick them up.  I continue to get them as a part of the Trial, so there is no cost to me.  I am not sure how long this may continue, but I get the sense it will be for a while longer.

I think there has been some confusion on some people's part about my routine.  I go to UCSD Moores Cancer Center (not Scripps, which is right next door).  Although I am taking a drug daily (Imbruvica) for my CLL, I still go to Moores monthly to get an IV infusion of immunoglobblulins.  This infusion is given to me because I have a compromised immune system and because I have had AIHA (severe anemia) in the past.  So it is given to me not to treat the CLL, but the issues that come up because of the CLL create a higher risk of infection and recurrent AIHA.  

My physical exam was unremarkable, which continues to be the case since the second month I was on the drug.  Keep in mind that this drug does not work for everyone.  It does have about a 70-80% success rate, which is remarkable, but there are people out there that have not tolerated it, or have developed a resistance to it over time.  But right now, for me, it is working well.

It looks like Donna and I will have another opportunity to share my journey with people.  We are schedule to go to San Francisco in 2 weeks to be a part of a focus group on people living with chronic diseases.  We don't know a lot of the specifics yet, but it should be exciting.

Since my last post I have lost two friends to the ravages of their diseases.  One was a CLL friend who had reached the end of her treatment options and opted for a bone marrow transplant.  Her sister was a perfect match, and several months after the transplant they could find no traces of CLL.  However, her body never completely accepted the graft (a condition called Graft vs Host Disease), and unfortunately she passed away as a result of that.   The second person was a dear friend who had been battling prostate cancer for over 18 years.  When he was originally diagnosed his PSA was over 500 and he was only give a short time to live.  He was on the cutting edge of treatments and battled courageously for a long time.  RIP Duane.

Once again I will make the comment that life is a gift.  You can never be certain of where this path will take you.  You can't afford to let the small things overtake your life.  You, or they, may not be there tomorrow. 

Over 200 years ago a group of tradesmen, farmers, and merchants decided that they wanted to rule themselves and form their own country.  Because of the efforts they made, America is the greatest country on earth.  Don't let this day go by without remembering how fortunate we are.

Terry