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GOOD NEWS!
Just flew back from NIH. The drug is working!!!
This time only six vials of blood were taken. I always make
sure I am hydrated 24 hours before getting my blood drawn, and I make sure to
keep my arms warm. This helps, since I have crooked veins and am a hard stick.
I am getting used to having my blood drawn, and now I can look at the process
of the technician filling the vials. Still have to close my eyes and meditate
when I get the needle; however.
My white blood count (WBC) has escalated to 101,000, but
that shows that the cancer cells are leaving my lymph nodes and are dumping
into my blood. Hopefully, after two months of escalating, the WBC will begin to
decrease to a normal range (3,000 to 10,000).
My hemoglobin has slightly decreased to 13 and may decrease
more on this drug before it increases. Normal levels for an adult is between 12
to 18 grams per 100 milliliters of blood. Dehydration and lung cancer can cause
levels to be above normal. Anemia, kidney, and liver disease can cause levels
to drop below 12. If it decreases to 8 then I will need a transfusion. If I was
in my 70s, had heart disease, and shortness of breath, then I would get a
transfusion right away. But I am not, so no worries.
LDH (lactate dyhydrogenase, which is an enzyme in red blood
cells) increased slightly, but no worries at this point. It is a marker for
hemolysis (rupturing of hemoglobin in surrounding tissues) and myocardial
infarction (heart attack), so the medical team will need to watch this.
I am having a Beta 2 microglobulin value decrease already,
which is good. It is still high at 2.1 (previously was 2.2) and the normal
range is 0.9-1.7 mg/L. These are markers for
the activation of the cellular immune system, as well as a tumor marker in
certain hematologic malignancies.
My platelets are increasing and aggregating in the normal
range, which means my platelet function is normal. This is good.
My neutrophils are low at 5.1 (normal range: 34.0-71.1%). A
neutrophil is a type of mature (developed) white blood cell that is present in
the blood. White blood cells help protect the body against diseases and fight
infections.
My eosinophils are low at 0.0 (normal range: 0.7-5.8%). They
are also a type of white blood cell that helps protect the body against
diseases and fight infections.
My basophils are low at 0.0 (normal range: 0.1-1.2%). are a
type of white blood cell that are involved in inflammatory reactions in your
body, especially those related to allergies and asthma.
My monocytes are low at 0.7 (normal range: 4.7-12.5%). These
are white blood cells made in the blood marrow. They attack any foreign
material, such as a bacteria or virus, and consume it so that it cannot hurt
the body. They preserve an antigen, so that the body will be able to recognize
the foreign material in the future.
SIDE EFFECTS and
BENEFITS
No major side effects after two weeks. Physical symptoms are
improving. Dr. Farooqui said that other patients have experienced canker sores,
rashes, severe leg cramps, bleeding, heart palpitations, and shortness of
breath. So far, so good for me, but I am only two weeks out from the initial
treatment, so it remains to be seen.
I mentioned to Dr. Farooqui that occasionally I would
experience painful joints and muscles when I got up from sitting for a while.
Since I have been on Ibrutinib, I have not had any pain. Dr. Farooqui said that
the drug was has potential effects for patients with autoimmune arthritis, so I
get an extra benefit.
My fatigue has been improving. I can’t believe I don’t need
a 3- to 4-hour afternoon nap every day in order to function. I hope this
continues. I am still sleeping longer at night than my normal pre-cancer life,
but I figure my body needs it to heal itself.
I have been fighting a respiratory infection (the common
cold) and I can’t believe what a baby I am about it. I really don’t like the
feeling of not being able to breathe fully. My ribs are sore from sneezing and
coughing. I cannot take an aspirin or any type of blood thinner while on
Ibrutinib, so I have resorted to gargling with salt water for fear of taking
something that will cause internal bleeding. I have also had to be careful
about laughing too much when I have a cold, because it makes me cough. Carl (my
little worry wart) is worried that I am going to bleed internally from one of
my MaMa La Verne sneezes and he has been hovering around me like a protective
eagle. I believe it must be harder on the caregiver than the patient at times.
I believe I will be just fine.
FUTURE TRIPS TO
NIH
I will be taking a number of trips to NIH this summer and
fall. I will be flying in the night before the blood work and meeting with the
medical team, and flying out that evening, unless I need a transfusion. The
plane ride home is uncomfortable and long (since I have been up since 3:00 am
AZ time for blood work), and I am exhausted when I get home. I will have to
consider whether to spend another $200 on another night at the hotel. The good
thing is that my cousin Sammy has dinner with me when I arrive, and that is a
wonderful bonus.
The January trip is a longer one with a number of medical
procedures. Carl and I will be staying by the metro so we can get around DC.
Since we are spending all our vacation money and savings on these medical
trips, DC will have to be our vacation destination for the next couple of
years. I am okay with that.
IMPORTANT NOTE
When my WBC drops to the normal range, this will not mean
that I am cured of cancer, because if I stop taking the Ibrutinib (PCI-32765),
within a week my WBC will begin to escalate, according to what has happened to
prior patients. What I am hoping for is that my cancer will be manageable and
it will buy me some time. Researchers do not know if eventually the cancer
cells will be intelligent enough to figure out another pathway, just as Gleevac
has done after 10 years. If so, there are at least two other kinase inhibitors
in the works. I will deal with that when the time comes. What a lovely word…
“time.”
To get all there is
out of living, we must employ our time wisely, never being in too much of a
hurry to stop and sip life, but never losing our sense of the enormous value of
a minute. -- Robert Updegraff
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