Back To The Beginning

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. er’s some ironySo 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. Time to get serious about looking for clinical trials. First up, an appointment at Moffitt Cancer Center in Tampa this Friday to see what they have to offer. It’s all a lot of wait and see.