Adopt the pace of nature: her secret is patience.

Well, after 13 weeks, I finally got the 'official' word that I will begin my new treatment on Tuesday the 29th of October.  After being told on August 8th, that the drug company had officially requested that a 'crossover' be allowed on the trial I was previously on, it has taken all this time to put all the paperwork in motion to allow me to have the pill.  As far as I can tell, I am only the 2nd patient in the U.S. that has been approved for this extension.  End of short report.

This has been an especially challenging ordeal for me.  In the past, when I have needed treatment, it usually started in less than 4 weeks, and there were few issues, just usually some paperwork to sign and maybe a couple of extra tests like bone marrow biopsies, or CT's.  But this time, it was all about waiting.  Waiting on the FDA, the European Medicines Agency, the drug company, the Institutional Review Board at UCSD.  I know in my heart that there are procedures that need to be followed, but when you are the lone guy at the end of the decision making process and you have NO input as to when the decision gets made, it is frustrating.  There was never any doubt that this was going to happen.  But drug company should have put it in the original trial protocol, after it was left out, they should have started to get it added to the protocol instead of waiting until the trial was over.  It was only after the open criticism by three of the top CLL doctors in the world, that there was any movement to allow the 180 of us who got Ofatumumab to crossover to Ibrutinib if we relapsed. 

Even though the CLL is progressing as shown by blood tests, I am lucky that I am continue to feel fine, with no B symptoms like fatigue, night sweats, anemia, etc. 

This drug, Ibrutinib, has had about a 71% success rate in previously treated patients.  So even though there is a lot of promise with this drug, there are those patients that do not respond or have side effects that can't be managed.  I personally know 4 people on this drug, and they all have shared their side effects with me.  For some, they are minor, and for the most part fleeting.  For others it has been a daily struggle to manage the side effects.  However, all four have responded positively to the drug, so I am hopeful I will also fall into this category.

So starting on Tuesday I will go to La Jolla once a week for 4 weeks, then once a month for 6 months, and then every 3 months indefinitely.  The treatment consists of a pill taken once a day, so compared to my other 5 treatments, this should be a piece of cake.

I don't think that this is the end all treatment.  I think there are new drugs on the horizon that may give a more durable response.  But for now, I will take my pill daily and be happy that I have been given the option.

On an editorial note, there is something called the Parity for Oral Cancer drugs.  What this means is that usually an IV infused cancer drug is mostly covered by insurance companies and Medicare.  If your drug is a pill (which mine will be), you are lucky if the insurance companies and Medicare pay 50% of the cost.  With the estimated cost of my new drug somewhere in the range of $8,000-$10,000 per month, you can quickly see how grave this issue is.  Right now only about 19 states have oral parity laws on the books, which makes them treat all cancer drugs the same, no matter how they are given.  Unfortunately I live in a state where there is no law requiring this.  There was a bill passed by both houses in California and for some strange reason Governor Jerry ' Moonbeam' Brown vetoed it.  I do not know the details of why he decided to do this, but it was probably because someone added a rider to the bill that made it objectionable.  This is trying to be addressed at the Federal Level, but you can imagine how that may work out. 

I am off again next Wednesday to fly to San Francisco for the day to speak at Genentech (the makers of Rituxan).  They have asked me to present a 'patient experience' to a group of new drug reps and marketing people.  I have done this once before and think that I was able to give them a personal view of how the drugs they are marketing affect the actual patients.  They must have thought it was a positive experience because they invited me back to do it a second time.

I feel blessed to be in this position now.  To be able to see my grandchildren Wyatt and Naomi growing up is something I doubted I would see.  My team of faith, family, friends and doctors keeps me going.  I have yet to break 80 in golf, but my 81 last Monday was close, just ask my friend Rick.

Terry