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
