So the PET scan last September
showed 2 lymph nodes in my retro peritoneum starting to exhibit signs of
metabolic activity. In other words, the cancer was starting to grow there
again. These lymph nodes are located about 2 inches below my sternum towards
the back of my torso. The good news was they were not near any major arteries
or organs. The bad news was these can’t be gotten to surgically. With my CEA
also slowly rising- it was up to 2.4 at this point- my oncologist put me back
on full chemo. This consisted of Vectibix with Irinotecan. My treatment
schedule was 3 weeks on and one week off. This was brutal because the
Irinotecan added a whole new set of side effects in addition to the Vectibix
side effects. The biggest of these were GI complications and even greater
fatigue. The three weeks in a row had me out of commission for 4-5 days each of
those weeks. It was getting to be a bit much. On top of that my CEA was still
slowly, but surely climbing. By the time it hit 3.0 in December, my oncologist
ordered another PET scan. This time there was only one enlarged lymph node in
my retro peritoneum, but it had grown and was fully metabolically active. Also,
there was a new lesion on my liver. We immediately stopped the Vectibix and Irinotecan
and went full Vizzini from The Princess
Bride; when things wrong, you go back to the beginning. For me, that meant
going back on Folfox (Oxaliplatin, Leucovorin and 5FU).
In the good news/bad news reality
that is chemotherapy, the rash, splitting skin on my fingers and infected nails
would go away since I’m off the Vectibix, but constipation, greater nausea,
thinning hair and cold sensitivity were next up from the Folfox. I still had to
be on the steroids and antibiotics that were helping with the Vectibix side
effects for another 6 weeks, but then I could stop the antibiotics, and start
to wean my way off the steroids; that should lead to me losing some of the 20
lbs. I put on while taking them. Of course losing weight as a cancer patient
can be unsettling because it’s a good indicator that the cancer is growing. My
oncologist told me that I should lose the weight I gained while on the steroids
and be back at my old weight with no worries. If I got below my weight prior to
the steroids, then it would be time to worry.
This new treatment meant the
return of the hated 5FU pump. After my infusion in the office I was sent home
with a pump attached to the port in my chest that has the 5FU in it for 46
hours. Then I went back to the office to get disconnected. The disconnection
has the effect of air being let out of a tire. The physical exhaustion can be
overwhelming. Another “plus” of Folfox is that the treatments are every other
week, so I hope I’d have more time and energy to do things. I was scheduled to
get 4 sessions of this treatment, and then have a CT scan to see if the lymph
node and liver lesion had shrunk, or hopefully, been eradicated. If it worked,
we would keep going with either more treatment (if it only worked partially),
or maintenance, if the cancer were eradicated.
I didn’t make it to the fourth
session. By the third treatment, my CEA had gone up to 6.8. Seeing this my
oncologist ordered the CT scan early. Again we had good news/bad news. Good
news- the lesion in my liver was gone. Bad news, there were more lymph nodes
that had grown in my abdomen and now there were 3 nodules in my lungs. Here’s
some irony; they could get rid of the lesions in my lungs with RFA like they
did a while back for one in my liver, but, in order to do it the lesions have
to be at least 1 cm, where the biggest one was only 7mm. The lymph nodes in my
abdomen are bigger than 1 cm, but they’re in a place where they can’t get to
them. So for them
to help me with the nodules in my lungs my cancer has to get worse.
All this was incredibly
disappointing. I didn’t stop Folfox four years ago because it stopped working,
I stopped it because I became NED and we wanted to have this in my back pocket
so when all other chemo options stopped working I could go back to it. Unfortunately
the latest recurrence was resistant to my back-up plan. Pretty devastating
news. My oncologist said I should try Lonsurf, which is a chemo pill. I am wary
of chemo pills since my Adventures in Xeloda in 2015. However, I was assured
that Lonsurf doesn’t have the same side effects as Xeloda, and from what I’ve
heard it’s supposed to be one of the “easier” of the chemo regiments as far as
side effects go. I hope so. I also hope it works, because with each new chemo
treatment I don’t know if it’s going to be effective or not, and I’m running
out of options. I’ll be on these pills for 3 months and then another scan. The
oncologist told me that I shouldn’t expect to see any positive results for 2
months.
