After two months more of
Folfiri & Vectibix I had a PET scan. The lymph node that had been enlarged
and metabolically active (cancerous) shrunk to 1.5 cm and showed as
metabolically inactive. That and my CEA still being <.5 put me squarely back
as NED (No Evidence of Disease) for the third time. This was on May 25th.
May 30th was my next treatment (just Vectibix as maintenance) and my
CEA was up to .6. The next month it was .9, and the month after that 1.2.
Great, now the number was going up- but there was that clean scan so nothing to
panic about… yet. You try having stage IV colon cancer, watching your number go
up and try not to panic. It ain’t easy. As I’ve said before, I’ve been lucky in
an unlucky situation, as I’ve responded well to every treatment prescribed so
far. Of course the cancer eventually builds up resistance to these treatments
and I move on to the next one. The problem with that is, I’ll eventually run
out of treatment options. I talked to my oncologist about looking at what other
treatment options might be out there for me, including clinical trials. He
agreed that now would be a good time to start looking and told me I should go
to MD Anderson in Houston, TX. - the top cancer treatment hospital in the
country.
I called MD Anderson and made
arrangements for them to get all my medical records from my local oncologist.
They told me that after they checked out my records, if they thought there was
something they could do, they would schedule an appointment for me. That
appointment was scheduled for August 10th. This had me both excited
and nervous. It was around this time my CEA was going up and hit the
aforementioned 1.2, which made me nervous, but I was excited that they might
have something that could help me. They have an online portal for patients and
I could see that they already had a full morning of appointments for me lined
up: 8:30 AM: Registration, 9:00 AM: Meeting with the Dr., 10:00 AM: Blood work,
10:25 AM: CAT scan with contrast, and then I would have a follow-up appointment
with the Dr. the next Monday. My family is in Texas north of Dallas, so I
planned to drive up and spend a couple of days with them and to drive back in
time to make that appointment.
I got to my appointment only
to be informed that I had missed part of the online “paperwork”- eight pages of
medical history questions that I had to answer before going in. This put me
behind schedule. When I saw the Dr. (who was running behind as well) he told me
there wasn’t going to be much he could tell me until he saw the blood work and
CAT scan results; a little frustrating, but understandable I guess. So on I
went to get my blood drawn (one of the best sticks I’ve ever had), and the CAT
scan. MD Anderson is huge. To get from phlebotomy to the CAT scan there was an
indoor shuttle, and it still took about 10 minutes to get there! With the
delays, I didn’t get to the CAT scan until 12:30, and they didn’t scan me until
3:00. The contrast I had to drink was different than the contrast I got back
home. At home I have the “delicious” barium smoothies to drink (I go for the
banana flavor). Here they gave me options for drinking the contrast in 32
ounces of water, Crystal Light, orange juice, or Sprite (what movie theaters
call a medium drink). I picked Sprite. Almost two hours later as I was lying
down for the CAT scan, the radiologist asked me if they explained the rectal
contrast to me. I told her they neglected to mention the rectal contrast. She
started to explain that she was going to “take a tube and insert it…” at which
point I cut her off and politely told her that I was going to decline the
rectal contrast. She said no problem, and we proceeded without it. I looked at
it this way; I’m scanned and tested regularly, and I know there’s nothing back
there anymore. Also, I was going to be driving 5 hours north right after, and
wanted to have a comfortable time sitting for that long. The scan went well,
though they inject the contrast at a quicker rate than I’ve had before. The
iodine-based contrast they infuse creates a warm feeling and the urge to pee.
The ones I’ve had in the past only made my torso and pelvis get warm, but this
faster rate had the warmth expand all the way up to my face and down my arms.
It was surprising, but went away as quickly as it started, and I was done with
my appointment. I was now free to leave, go visit my family, and come back on
Monday.
I spent the next couple of
days having a nice visit with my family ( eating fresh chocolate chip cookies
and getting beat at Flux by my nephew). I drove back to Houston on Sunday
evening to get in for my follow-up on Monday, after which I was flying home.
When I saw the Dr. he told me my CEA was 3.1, at which point I started to panic.
He said that their lab results are usually on the high side, and it’s better to
use the same lab consistently to get a more accurate result (something my
oncologist has said as well). The other reason not to panic was that my CAT
scan came back clean. However, when I saw the report I saw that wasn’t
completely true; the lymph node that we had spent time shrinking had grown from
1.1mm x 1.5mm to 1.2mm x 1.9mm. The CAT scan can’t tell if it’s just enlarged
or if it’s enlarged and “metabolically active”. That would take a PET scan. My
oncologist at home has me scheduled for that.
The Dr. then told me that
there was really nothing they could do that I was not doing already. He told me
that since there was no active cancer that trials were a no-go at this time,
and I should stay on the Vectibix until my cancer was resistant to it, and then
go back on Folfox (the Howitzer of chemo that I started on when I was first
diagnosed), and then call him and look for clinical trials when the cancer
started advancing while on that. I asked about Lonsurf, which while it doesn’t usually
decrease the cancer, it could keep it stable for a period of time. He dismissed
the drug out of hand (I was so shocked by this and his saying there was nothing
else to do, that I forgot to ask why). Also, I was getting pissed off. Why
dismiss any course of action that could help prolong my life? I don’t want to
die. I’m not ready to die. I am fighting to live, and will use whatever means necessary
to do so. Another reason I was angry was because when I contacted MD Anderson
they said they would look at my records and would only see me if they felt they
could help me. My records showed that I had no “active” cancer. Why did they
have me fly in, wasting my time, energy and money when there was nothing they
could do? It’s both a good and bad thing when you’re seeing a doctor in a
hospital in Texas and the smartest person in the room is back in Tamarac,
Florida. So here I sit, in cancer no-man’s land; I have stage IV colon cancer
but I’m NED, waiting to get sicker (my latest CEA was up to 1.9) so there’s
something more that can be done. Yet another “new normal.” For now I’ll just
wait and see what the PET scan shows…
