I just returned from my quarterly visit to the National
Institutes of Health (NIH) in Bethesda, Maryland, where I am in a clinical
trial with the drug ibrutinib. I flew to NIH and arrived with the outside
temperatures at 10 degrees. Brrrrrr. It was 70 degrees in Arizona. I brought
along sinus and lung congestion that I have been fighting for a while.
I
will get right to the very good news: If my bone marrow biopsy results
on July 2015 are the same as the results of July 2014 (which Dr. Adrian Wiestner
is optimistic about), then he declares that I am in clinical complete
remission at 30 months of ibrutinib treatment. This is the best news I have
had since I was diagnosed with CLL/SLL (17p deletion plus p53 mutation, a poor
prognosis) August 2009. Hurrah! Hurrah!
This, however, does not mean I am cured and this is why:
A cure by definition means the end of a medical condition. A
disease is incurable if there is a chance for relapse. I still have 59% damaged
17p deleted cells lurking about in my peripheral blood, according to my FISH
test from last summer. When I began the clinical trial, I had 97%. So I have
improved. The remarkable feature of ibrutinib is that it is not dependent upon
a 17p diagnosis as being a poor prognosis. If I were undergoing chemotherapy intravenously,
then the 17p-deleted cells would matter.
I never expected a clinical complete remission. I knew that 17p
deleted patients were having partial remission (PR) on ibrutinib.
A remission by definition means the temporary end to the symptoms
of an incurable disease or the absence of disease activity. A complete
remission (CR) is the complete disappearance of all manifestations of the
disease. A partial remission (PR) is the 50% or greater reduction of cancer cells.
I personally only knew of one 17p patient who had a clinical
complete remission early on with ibrutinib and that was my blood brother Dr.
Matthew Hils. He told me he had messy cytogenetic and 17p was not the only
problem in his blood. He relapsed and passed away before he could be treated
with ABT-199, another oral kinase inhibitor in a clinical trial. Matt was such
a good person. All of us at NIH miss him.
In spite of the fact that I arrived at NIH with sinus and lung
congestion, my blood work still managed to be normal. That was exciting news.
As a proactive patient, my next concern was a Plan B. What do I
do if I relapse on ibrutinib, since the 17p deleted patients have been
relapsing in about three years? Dr. Wiestner said that there would be many more
options available for relapsed patients in the future. If I relapsed TODAY, Dr.
Wiestner said that the options would be:
•
idelalisib: An FDA approved (July 14,
2014) PI3K inhibitor effective with p53 mutated patients, but still too costly
for me, since the U.S. Congress has not passed the cancer drug parity bill. The
drug company reports that the monthly cost for idelalisib is $7,200, which they
report is lower that the comparable price for ibrutinib, which sells for $8,200
a month.
•
ABT-199: Currently in clinical trial
• Half-match
stem cell transplant: Remember that since I am bi-racial, I have less than
a 1% chance of finding a match. He said that my brothers may be half matches
and that I am still young enough for that option until I am 70. I turn 63 this
month. Siblings have a 50% chance of being a half-match for each other a 25%
match of not matching at all, and a 25% chance of being a perfect match.
I asked about the ROR-1 studies. He said they are still in the
early phases.
This month I am driving to San Diego to have a consultation with
Dr. Michael Choi, who works with Dr. Thomas Kipps at the UCSD medical research
center. They are doing a clinical trial using ABT-199. My name is in the
system. I just want an option available just in case.
Then Dr. Wiestner smiled and said that because I used ibrutinib as a front-line treatment, I am one of the 17p-deleted
patients least likely to relapse. I paused, took a deep breath, and had the
unbelievable urge to call my husband and tell him that I may be around a little
longer.
