It has taken me a good month to process the results of my bone marrow
biopsy, my FISH test, the clinical trial letter I received, and information on
the length of time ibrutinib works for 17p deleted folks. Sometimes I am intentionally
slow at assimilating information because I need time to process it so that I do
not panic.
Remember that at initial diagnosis and therapy, I had the 17p deletion.
I was treatment naïve before being a participant in the ibrutinib trial. Patients have a 5 to 10 percent
chance of having a 17p deletion at initial therapy, but the frequency increases
to 20 to 25 percent in relapsed populations.
Let’s start out with the results of my tests from my two-year clinical
trial checkup at the National Institutes of Health.
GOOD NEWS
• I still have evidence of leukemia in the flow cytometry; however, the
presence of abnormal leukemic cells in my blood has been reduced since January
2014 from 86.4 percent to 59 percent. Slow, but continued improvement.
• There is no visible evidence of leukemia in my bone marrow, which is where
the leukemic cells are produced. Ibrutinib works for 24 hours, which is why the
pills must be taken every day. Apparently I am being a compliant patient.
• I am not in remission after two years on ibrutinib, but my white blood
cell count is heading in the right direction.
• My myeloid and erythroid maturation is progressive. Translation: My
white blood cells and my red blood cells are maturing. This is what we want to
see, since I previously had many immature cells that never matured.
IBRUTINIB FAILURE
RATE OF 17p DELETED PARTICIPANTS
Here are the facts I found in the latest research: The risk of failure
on ibrutinib has been documented to be higher with patients having 17p
deletion, and achieving
a complete remission is significantly lower with the loss of chromosome 17.
Dr.
Michael Keating also mentioned in his newsletter that a British clinical trial
showed that patients with less than 20 percent of 17p deleted cells,
experienced a more favorable treatment outcome compared to those with a higher
percentage of abnormal cells. My numbers are way above those percentages;
however, I hope to be an outlier.
So
what do you do with these “bad” stats? I try to connect to others and find out
possibilities. I have to keep reminding myself, "Remember that these are just statistics. It does not mean it has
to be you."
One of the bloggers I follow is Dave
Eckberg, M.D., who is a medical doctor and a Vietnam vet exposed to Agent
Orange. He is my blood brother and has CLL/SLL and has developed 17p deletion.
I decided to read his blog from the beginning to end, and I came across
a post from nine months ago that concerned me. Dr. Dave posted a blog about the
ibrutinib failure rate in the 17p deletion patients after 30 to 48 months on
the drug and was also concerned. And of course as I am reading it, I am
thinking, “Oh, my! I am on month 25!”
So rather than let my imagination go wild, I contacted Dr. Dave to find
out an update. He had an upcoming appointment this summer with Dr. Michael Keating, his CLL specialist
in Houston at M.D. Anderson, and was going to ask him about the percentage of
patients failing the drug. He was told 10 percent.
I also contacted another blood brother, Brian Koffman, M.D. He is a medical doctor and a CLL/SLL patient
who has developed 17p deletion. He
said that the majority of frontline (those who have ibrutinib as the first
cancer treatment) 17p patients do great, but the success is not as high as
those with relapsed disease. Progressive-free survival (PFS)
is around 60 percent for 17p-deleted participants on ibrutinib at three years,
according to recent research published.
Dr. Adrian Wiestner, my
NIH physician, said because my treatment- naïve body has not been damaged by any prior toxic chemotherapy treatments, which
destroy the healthy cells, he feels better about my survival chances.
The bottom line is that we don’t have the answers yet. Being a proactive
patient, I have to prepare myself for the worst-case scenario. If ibrutinib
fails me at some point, there are several clinical trials on the horizon with
various therapies that could be my Plan B or Plan C. There is hope. In the
future there will be options. Today the possibilities are so much better for
those diagnosed with the poor prognosis than they were five years ago. So life
is good.
ANOTHER BUMMER: THE
CLINICAL TRIAL LETTER
Those involved in research understand that clinical trial researchers
inform participants if there is a death that may be caused by the experimental
drug. Participants are given a choice to voluntarily remain on the trial or
leave. I received such a letter from the NIH.
Since February 2009, 6,000 human patients have been treated with
ibrutinib in a commercial setting, and over 2,800 human patients clinical setting
in a clinical setting. June 14, 2014 one of the NIH trial participants died
suddenly from sudden cardiac death and all the clinical trial participants were
notified. One of the side effects of taking the drug has been documented to be
abnormal heart beats (atrial fibrillation). If any of us have had hypertension
and arrhythmia in the past, we are to be particularly sensitive to any
shortness of breath, rapid heartbeats, chest pain, dizziness, or
lightheadedness, and we are to seek medical attention and notify NIH.
I had an EKG test performed and it came back normal. I had hypertension
years ago, but a couple years prior to being admitted into the trial my blood
pressure dropped to the point that I was taken off the blood pressure medicine.
I have been taking my blood pressure on a daily basis. Some days it is higher
than normal, but most readings are in the normal range.
I often deal with the “what-if” potential crisis by removing myself
emotionally and putting on the hat of the researcher, or relying on my demented
sense of humor. After reading the letter, I told my husband that the silver
lining is that if I did die from sudden cardiac arrest, at least it will be a
fast death, and that I better not leave the house without clean underwear. He
did not think that was funny. LOL.
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