I was going to write a nutshell version of my visit today but then realized that I had too much to say!
1) So most importantly, I had a really good response to Folfox. Tumors shrunk and are showing less activity but unfortunately, there is still some cancerous activity (although less than there was 3 months ago). Of course I wanted to hear that there was no sign of disease (NED) but shrinking is still better than “stable” and “growing”.
2) We are giving my body a break from the hard chemo. I learned that my 2 oncologists have been conniving behind my back, apparently they thought that I would not be able to tolerate more than 3 or 4 infusions (but they didn’t tell me that) and I ended up doing all 6! The good news is that my oncologist thinks we may be able to recycle this chemo one more time as I am still responding to it.
3) I was pretty convinced that he would want to switch me to a recently FDA approved drug (Lonsurf or TAS-102) but he wants to keep me on 5FU (the pump) as it is still working. We want to stretch my options as long as possible, so the goal is to stay on drugs that work for as long as possible. I brought up the idea of only doing the “bolus” and he was very receptive to it. When I get the pump, I first get an injection of the medicine (5FU) which is referred to as the “bolus” and then the rest of the 5FU gets infused into my body over 46 hours through the pump I take home. I have seen a couple of other fighters only get the bolus and the idea of being off the pump for a while was very enticing so I asked about just doing the bolus. He thinks it is a fair idea and even said we would start with once every 2 weeks, then do once a week if my CEA starts rising and if it continues to rise, we could go back to the pump. I am good with that! Yay, not pump for a while!!!
4) While, I am on this “break”, my goal will be to recover and regather my strength and energy for the next round. The ultimate goal is to keep my liver healthy, let my body detox from the chemo, and just stay healthy overall. This leads me to the next thing on my list: my back! So I know I blogged about this before but I have been in a lot of pain for a long time and tried everything I could come up with. I even recently met with a physiatrist (who specializes in bones, muscles, and nerves) to see what else I could try. He told me that given the size if the disc fragment that is pressing on my nerve, he doesn’t believe that anything other than surgery would help (and he said he very rarely recommends surgery). This pain is definitely preventing me from being active and it has actually been taking a big toll on my quality of life, I would even say more so than chemo. In order to keep my whole body healthy, I need to be active and exercise, something I haven’t been able to do in a long time… so surgery it is… I will need to be off one of the drugs that was in my last combo for 6 weeks so this leads me right into the Holidays. The timing sucks but I only have a small window of opportunity to do this as when the cancer reactivates, we will need to restart more intensive chemo. I haven’t decided yet where I wanted to have the surgery but I am leaning towards Shands. More to come on that…
5) My oncologist will be presenting my case at his next tumor board and I will have my local interventional radiologist review my scan to see if we could treat some of the spots on the liver with microwave ablation and this could be done while I am on this big chemo break.
My doctor expects that the cancer marker will go up and that the cancer will reactivate at some point. The goal for now is to keep “a lid” on it for as long as we can and to jump into an immunotherapy trial when one becomes available. My doctor is very excited about what is coming down the pipe and said that there has been more research done on immunotherapy trials for colon cancer in the past 6 months then in the past 6 years so he is very optimistic that there will be something soon.
I am a little anxious about stopping the intense chemo when I know that there is still activity in the tumors but I do need a break. I have been on intense chemo for 9 months now and I am feeling physically and emotionally drained. I have all kinds of side effects from chemo with high blood pressure being the one that concerns me the most. I have to be ok with knowing that chances are my CEA will go up and cancer will grow but as my oncologist said, as long as we can keep the lid on it and not let it get out of control, we will be in a good place. We all know that chemo is not going to cure me and I need to surf until the next best thing comes out.
I guess the best part of my meeting with my GI oncologist was hearing that I am not out of options, this is what was really weighing on me before my appointment with him. I like that I am not jumping into TAS-102 just yet and that we can stretch 5FU for a little while longer. He thinks we could try again Folfox and if push comes to shove, he thinks I could even try this new drug RRX-001 that actually resentizes your cells to a chemo I have been on before called Folfiri (thanks Tom M. for the tip!). Then we have clinical trials. I just feel like he has just given me “time” and that takes a lot of pressure off my shoulders. I tell you, I don’t know what I would do without that doctor, he is phenomenal! Thanks Dr. G.!