Update

So it's been four months since my last update. A lot has happened since then, so I'll try to go through it all quickly so you can have a sense of where things are with me.

I moved back to Maine in Mid-July to be closer to most of my family. I spent the first three months in a couple of extended stay hotels, as we explored options for more permanent housing. Maine is beautiful as always and it's been good to be closer to most of my family, but there are a lot of things that I miss about Illinois, my sister Janet, my friends and my church being on the top of that list.

About a month ago, I moved into a new apartment that fits my needs and is affordable. This was really a gift from God that I found it. A couple of weeks ago my stuff arrived from Illinois and I'm finally feeling settled in, thanks especially to my mom helping me unpack.

In September, I started an oral chemotherapy. It is one of the final FDA approved chemotherapies for metastatic rectal cancer. I was on the drug for two months. It wasn't very much fun, especially the second month as I started to vomit fairly often during the two week stretches that I would take the pills twice a day. It was less difficult, though, than the chemo regimen I had been on for the last couple of years, so I did appreciate the lack of some of the side effect that had been so bad previously.

I had a CT scan last week and met with my oncologist today to go over the results. I currently have a few large tumor in both of my lungs and they each grew somewhat larger during the last two months. That means that the chemo was not effective against the cancer. This wasn't too surprising as after many years of chemo tumors can become resistant to other drugs, and this was sort of a last line of defense option. 

The next steps are that I'm probably going to have another biopsy of the tumors. We did one in September, but they weren't able to find any usable cells for genomic testing. Unfortunately, the tests they would do to make sure that the biopsy has useful material would make testing the sample impossible. The hope is that there might be a new mutation in tumor since my last genomic profile back in 2011 that would allow me to qualify for a clinical trial. The chances are pretty low, but we're sort of out of proven options at this point. There is one other FDA approved oral chemo, but its likelihood of being effective is quite low and the side effects are often quite severe. I don't think that the cost-benefit analysis makes sense with that drug.

I'm going to meet next week with a doctor at Dana Farber Cancer Institute in Boston. I've met with him a couple of times about possible clinical trials he is working on. Until now, he's suggested sticking with the approved chemotherapies, but that once those were exhausted we could consider his immunotherapy trial. He has cautioned me both times, though, that the trial hasn't been showing definitive results yet.

I'm going to return to my oncologist in a month when hopefully he has the results the biopsy. At that point we'll discuss further options. I think the chance of finding an actionable mutation is low, but it seems worth at least exploring.

At the moment, I'm not having any major symptoms from the tumors. They aren't near my airway or any other vital structures, but they are quite large. I have had a cough for more than a year now, but it seems to be related as much to the many hernias I have from past surgeries and other gastrointestinal issues as it is to the cancer. My mobility is a bit less as the neuropathy from my radiation treatments on my spine have continued to weaken my right leg and foot. I'm especially thankful for the blessing of this apartment which makes getting around much easier.

Please pray for wisdom about what options to pursue and that the cancer continues to grow slowly in the meantime. Thank you all for your encouraging words and prayers. They mean a lot to me.