No MATCH

The genetic testing results came in and they were unable to find any match for a targeted drug, so it looks like we're out of that clinical trial. The pills for chemotherapy drug Lonsurf - pronounced "lawn surf" - had actually already been delivered Friday, so Karen was able to start on them immediately. We had an appointment last week where we went over what to expect when taking Lonsurf. The typical side effects are: diarrhoea, nausea, vomiting, fatigue, a decrease in white and red blood cells, and a decrease in platelets. Theses side effects actually sound kind of mild compared to what we've dealt with before. There's no mention of anything like sensitivity to cold, aches, chills, or hand-foot syndrome. All of which have been hard on Karen when dealing with chemo previously. The Lonsurf is taken twice a day, 5 days on and then 2 days off, for two weeks, and then there's a break for two weeks.

Chemotherapy's never really been able to shrink Karen's cancer. The best we've done is to stall or slow down the growth. This means this new drug is also unlikely to shrink these already painful growths. As such, the palliative team has suggested we use radiation therapy on these areas. One of them is so near the surface that it should be possible to treat it with almost no side effects in just one session of radiation. It was also suggested that we don't have to worry about any major side effects since these spots are close to the surface. Seeing as how either just dealing with the pain or having another surgery were the only other options we had considered, Karen was quite excited by this prospect. We'll have one appointment to go over the procedure and its possible side effects, and if we're still interested, a "simulation" where they measure everything out more exactly.

The Waiting Game

We decided to go ahead with the NCI-MATCH clinical trial, so last Friday Karen had an ultrasound guided needle biopsy done on one of the masses in her abdomin. Currently, the chemotherapy you receive is based on the origin of the cancer; so colon cancer patients get different chemo than lung cancer patients, even if the colon cancer spreads to the lungs. In this clinical trial the cancer is gene sequenced and a matching treatment is picked out based on specific DNA mutations or abnormalities. While immunotherapy treatments - such as the one in the previous trial - are an idealistic future treatment for cancer, this sort of targeted chemotherapy treatment seems to be a more immediately reachable goal. That said, there are currently only 24 precision drugs that target different genetic abnormalities in the cancer, and most people won't find a match for their cancer. I forget the exact range we were given, but the likelihood they'll line up a match was somewhere in the range of 15 to 30 percent.

You have to be off any other treatments for 4 weeks before you can start a clinical trial and the biopsy can take 2 to 6 weeks to be sequenced. So we just have to wait. Unfortunately the cancer won't. The masses on Karen's abdominal walls have continued to grow quickly. There's a lot of pain associated with these growths due to their location on or around the muscles near the surface of her abdomen. Karen's recently gone up on her pain medication and is now on the highest doses of painkillers she's even been on at home outside of recovering from the our last surgery for which we got sent home early. As such, we had a visit with the oncologist Wednesday to pick out the treatment we will go with if no match is found, and have begun the approval process through the insurance. It's a new chemotherapy drug called Lonsurf, which has only recently been approved for the treatment of colon cancer.

Since the last update Karen's been struggling emotionally with the cancer's seemingly increased rate of growth. Up until now the cancer has been pretty slow growing, with only millimeters of growth between scans, but with this last scan we saw centimeters of growth in areas in just two months. And now she has these painful lumps that don't even allow her to roll over in bed without being reminded of the cancer. While she'll feel like talking about it occasionally, most of the time she doesn't. It really bothers her when someone asks her about the cancer, and I've noticed her almostly completely stop talking to people simply because they bring up the cancer too often. This is partially my fault as I haven't been updating the blog as often as I should, but I guess I don't like thinking about it either.