Second Week of Radiation

This last week of radiation turned out to be a lot harder than the first. The issue seems to be that the tumor sites are getting inflamed from the radiation and causing more pain. We had been warned about this but we didn't realize it would be significantly more painful. Tuesday night Karen started to feel more of an aching on her left side. When she got up in the morning there was a sharp pain upon moving. She said it felt like something inside her was tearing. At certain times standing up was painful enough to make her double over and gasp for air. They upped her pain medication by a significant amount when we went in that day. 50% to be exact. Karen felt like that might be a bit much and wanted to try out just a 25% increase. By the end of the week she was on the full 50% increase and wondering if it was enough. The increase in dosage has helped with the dull aches which also accompanied the new pains, but they don't seem to help a lot with the sharp pains that hit her at random times when getting out of bed or standing up. The left side is still worse than the right, but it does seem to be affecting both sides.

The only bright side to this pain is for once it actually is the cancer dying that's causing the pain. Something we've hoped was the case in the past, but turned out not to be. Since these tumors are near the surface we've decided to try a menthol rub like Icy Hot. If that doesn't work we want to try the lidoderm patches that worked so well with her localized pain the past. Her fatigue isn't getting any worse; unfortunately, she still has energy but can't do much without the fear of hurting. She's even finding herself awake at night when she wants to be sleeping. We've heard the radiation can also cause diarrhea, but it only seems to be balancing out the constipating effects of all this new pain medication. She has been taking fewer laxatives to stay regular, but it's yet to cause a problem.

First Week of Radiation

Karen's first week of radiation was so mild I'd considered not posting about it at all. We started Tuesday because Karen had been hoping to attend a particular charitable event on Monday. But she just felt too bad to go. However, as the week went on and we were further away from her last day of chemotherapy, she continued to improve. My biggest concern over starting radiation was fatigue, but by the end of this first week she has more energy than I've seen in awhile. The new pain meds seem to be helping a lot and aren't having the same lethargic effect on Karen that she had when on this dose before. Perhaps she has built up some tolerance.

I suggested she treat the areas where we're expected to see the sunburn‑like skin irritation as if it were already there, and to keep lotion and ointment on the areas. Even though we can't see any damage after these first treatments there's no question that damage is being done. So we'll see if that pays off in the long run. They did tell us we won't begin to see these kinds of side effects until we're 5 to 10 treatments in. The treatment themselves are between 5 and 10 minutes long. That's it. Scheduling still has to put us down for a 45 minute block due to what sounds like machine prep that has to be done, but Karen pretty much goes straight in after we arrive. We've never had to wait more than a few minutes.

First Radiation Treatment

The doctors built a 3D model of Karen's abdomen using the CT scans taken during the simulation. They measured out three beams to target the three sites. One beam treats the tumor on her left, while the other two both line up with the tumor sites on her right. It sounds like they would have wanted two beams for one area anyway, the one that's close to her small intestine. So rather than treat one of the spots separately all in one go, they are able to treat both areas with overlapping beams. This is possible because both sites are aligned with the large scar from her previous surgery. There will be some scar tissue between the two spots that may fall along the lines of the beams but there's no harm there.

This session, while shorter than simulation, was still much longer than future treatments will be. This is because they wanted to make sure everything lined up with the 3D model they made and that nothing had shifted or moved since the scans. This consists of Karen laying in the custom fit mold they had previously made and having areas measured out on her skin with a marker. They were able to feel the tumors under the skin and see that everything matched as it should. They also covered the three small marks they gave her last time with somewhat larger stickers to help line up the machines in the future. (These stickers are water resistant and should stay on just fine while bathing.) Several pieces of metal were machined to fit perfectly over her abdomin to prevent the beams from going where they shouldn't. These were also fitted to make sure they laid flat against her skin and were smooth and comfortable. There's also a blue, thicker, almost skin like material of a calculated width that they place over other areas to dampen the beams there. Everything was as planned and nothing had to be recalculated or redesigned.

There will be 15 treatments, which means three weeks of radiation. Karen's different had doctors discussed this and rather than get that third week of treatment while on chemotherapy, we'll be waiting three weeks before starting chemo again, instead of the usual two. This way, all radiation treatment will happen while she's off chemo. The first treatment itself was very quick and entirely painless. Everyone involved is very nice and overly cheerful. Karen's pretty happy with the way things are turning out.

Lawn Surfing

The new chemotherapy drug Karen's on, Lonsurf, has had only very mild side effects. There is some nausea by the second week, and yes there's the usual - often overbearing - chemo fatigue, but all of the other horrible side effects of chemotherapy seem to be absent. She says her sense of taste is off a little, but it's only a subtle difference. The only other thing is it can be a little tricky getting two dosages of treatment 12 hours apart when you're sleeping a lot. It has to be taken with food and sometimes it works out such that it's a little difficult, or if nothing else, frustrating, for her to wake up to eat something.

We're all set to start radiation treatment next week. There was something Karen had wanted to do Monday and treatment couldn't be scheduled around it, so we'll be starting this coming Tuesday instead.

Radiation Planning

Earlier last week we met with the radiation oncologist and went over the treatment. Karen identified three painful spots for the doctor. Only one of these can be treated in one shot. One of the other spots might be too close to the small intestines to treat all in one go, the other is certainly too close. He would feel better treating those spots over a 3 week period. Using the scans taken during the simulation, the doctor will work with a physicist to develop a plan that will shrink these tumors. While he plans on developing a 5 day a week, 3 week long treatment schedule, he still plans to treat one of the spots all in one go on the first day. This could reduce the amount of setup and adjusting they would have to do each treatment for the remainder of the treatment.

We were told that with radiation treatment, only 80% of patients have reduced pain. So one in five people will have as much or more pain than before. We were also warned that the cancer may swell up and have a reaction as it is dying - as any irritated part of your body would. So there may be a period of time where the pain is actually worse. There will also likely be a sunburn‑like irritation to the skin around the areas they treat, but it's not suppose to be worse than an actual sunburn. The other common side effect is fatigue. Fatigue is the one thing we've been seeing the most consistently, even when we're not on treatments. The fatigue seems to be a symptom of the cancer itself, so anything that causes more fatigue can really keep Karen down. There's also a chance of diarrhea, but we aren't too concerned with that since the pain meds tend to cause constipation. We'll have to wait to see how much the fatigue affects her, but overall it doesn't sound anywhere near as bad as any of the other treatments we've had so far. We were told it will likely take 5 to 10 treatments before start to notice any side effects.

The radiation simulation was Friday. They made a mold for her to lay in so that they can get her in the same position each time. They also gave her 3 tiny tattoos that they can use to help align the machines each time. When she points them out to you, you can see them, otherwise they are pretty much unnoticeable. Laying still for so long did get painful for her, but they assured us this was much longer than she would normally be laying there. The reason the simulation takes so long is because they are taking CT scans to use when planning out the treatment.

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.