I just returned from the National Institutes of Health in Bethesda, Maryland with a medical update. After four years and three months on ibrutinib, my blood work remains good, specifically my white blood count, which is still in the normal range (8.3K).
I had the opportunity to meet two
patients on the ACP-196 clinical trial, and met Nancy, a retired school teacher
from Houston, who is in the same leg of the ibrutinib trial as I am, and still
doing well. My blood brother George is still alive and kickin’ on ibrutinib. He
started the trial the same day as me.
However, as of Thursday, Oct. 13, 2016,
17 participants in my clinical study with ibrutinib have relapsed after four to
four and a half years on the drug. Most were 17pDEL, some were complex
karyotypes, and all received prior treatment before ibrutinib. If ibrutinib is
a frontline treatment for you (as it was for me), it may work in your favor,
according to Dr. Ahn Inhye.
The good news is that there are lots of
options now if you relapse that were not available when I was originally
diagnosed August 2009. Clinical trials with venetoclax (an Abbvie drug) have
shown amazing results. Trials combining ibrutinib and venetoclax have resulted
in some MR negative results, which are associated with long-term survival. Minimal
residual disease (MRD) is when a person is in remission, but there are still a
small trace of leukemic cells from the bone marrow that remain, even though the
patient shows no sign of disease. That’s me. It’s those little boogers that can
cause a relapse.
I have another unrelated issue I am
taking care of that has to do with my immune system. My GP said that recent
bloodwork indicated I tested positive in three blood tests: (1) anti-nuclear
antibody (ANA) test, (2) rheumatoid arthritis (RA) test, and Sjogren Syndrome.
The important thing to remember is that any of these tests can be a false
positive, so I will not worry about it until I find out otherwise.
The ANA test reveals the abnormality of
autoantibodies attacking the body’s own cells, which may indicate the diagnosis
of lupus. Further testing is needed. The RA test checks for autoimmune disease
of the joints. I have an appointment with a specialist in December. Sjogren
Syndrome is an inflammatory disease affecting the immune system and tear and
salivary glands – hence dry eyes and dry mouth issues.
So now I am trying to get my short-term
memory cells to communicate with each other, because I am performing in two
stand-up comedy routines next weekend. As the Alive & Kickin’ (A&K
Sisters), my stand-up partner Diane Miner and I will be opening for the Decoding Annie Parker movie and book
signing in Scottsdale on Saturday. It is about the discovery of the breast
cancer gene.
On Sunday in Tempe I will be doing a
stand-up comedy act as MaMa La Verne at the IMPROV, along with other comics, to
benefit the Leukemia & Lymphoma Society.
So there it is. Life is unexpected and
concerning, yet joyful. Hope is the word: Spread the
laughter, heal the soul.
In the end what matters most is how
well you lived,
how well you loved,
how well you learned to let go,
how much you laughed
and how hard you kicked cancer’s ass!
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