After waiting 18 months to get Ibrutinib (now called
Imbruvica), you would think that picking up my pills would be the foremost
thing on my mind. So last Friday I went
down for my 1 month checkup and blood draw.
My blood numbers are going the way they expected them, and the doctor
visit showed improvements in both my lymph nodes and spleen size. So after getting the good report we decided
we should get some lunch on the way home and we walked RIGHT PAST the pharmacy. So at 3:30 that afternoon (after I was home) when
it was time to take my pills I realized that we had FORGOTTEN to pick up my
next month's supply. I frantically then
called back down to La Jolla and asked what I should do. I knew I couldn't get back to the pharmacy by
the time they closed, but when I called them they said not to worry about it
since I would be back on Tuesday for my monthly IVIG infusion. They told me that 3-5 days off of the drug is
not critical because it is such a slow acting drug. Whew!
Enough of the sob story.
I am actually feeling pretty well.
No major side effects, just a lot of small irritating ones. None of them are as bad as some of the side
effects I have had in my past treatments, so that is a blessing. The strange thing about this drug is that it
causes your white blood count to rise.
That is really counter intuitive.
You would think that since CLL is mostly a disease where the white count
goes up, that you would want your counts to go DOWN? I started this treatment at 80,000 (remember
normal is between 5-11,000), and after a month I was up to 160,000. This means that the white cells that were
'hiding' in these places are being forced out into the bloodstream, hence a
rise in white count. This makes some sense because my lymph nodes and spleen
have shrunk down to almost nothing. This is pretty much normal for this
drug. Most of the people that I know
that are on the drug said it takes about 2-3 months before the counts start to
fall.
My new drug was approved by the FDA for Mantel Cell Lymphoma
this month, and is expected to be approved for CLL after the first of the
year. I have been told that this really
won't affect me and my access to the drug because I am on one of their trials
and they still want to track my progress.
So I guess I will keep getting the drug from them until they decide it
is no longer appropriate. This is
especially good news because the price of the drug has been set at $91 / pill,
which for me would be about $8,190 per month before insurance.
Last month I did make a trip to San Francisco to Genentech
to give a 'patient's perspective' on their drug Rituxan. This gets a bit confusing. I am no longer taking Rituxan, but have had
it over 30 times during various treatments.
The people at Genentech know of my situation, but for some reason they still
think that I can provide some information to their marketing teams. This time there were over 30 participants
that I spoke to and I think they got something out of it. I also got a tour of their research and
development lab, which gives me a greater understanding on why these drugs cost
so much. I also had an hour long web interview with a company that is marketing
a new CLL drug. At least I am putting
some of my experience to good use.
Being on this drug has allowed me to better PLAN my
life. For the last 6 months I have been
trying to figure out what my schedule will be.
Now I know what it will be for at least the next 6-12 months. That is a relief. I am now able to visit friends in the desert,
to go up to Seattle and visit my family up there, plan another trip to Spring
Training in Arizona and think about a River boat trip to Europe next year. Life is good.
Happy Thanksgiving to all.
