Radiation Cancled

The nurse called both Friday and this morning to check on Karen. By the weekend things had finally settled back down to the point where Karen felt she should be taking laxatives again, but it turned out to be a little too soon. Nonetheless, by Monday she did feel things were where they should be. This turned out not to be good enough for our radiation oncologist, who canceled the remaining treatments. He must have been expecting a faster recovery. We were both disappointed this was the end of the radiation treatment.

It feels like we almost never get to finish anything we start. At Mayo, we've seen - actually heard - a lot of patients having a little party/song put on by the staff when they finish a long series of treatments. It's not a food and presents kind of thing, but it is a celebration. I doubt it would have meant much to Karen or me, but not having such a celebration weighs on me. Every time I hear it happening off in the distance it makes me think of all the things we've had canceled early. This includes Karen's first series of chemo treatments, the short run with Xeloda, the clinical trials, and now the radiation. Of course it's good there's always someone watching out for Karen and stopping things when the costs outweigh the benefits, but it still feels disappointing when it happens unexpectedly.

Third Week of Radiation

Over the weekend the frequency with which Karen had to go to the bathroom continued to increase, and by Tuesday she was going roughly once an hour. The radiation oncologist said radiation can cause this, but it shouldn't be happening at this dosage. He also said 30 units (Gy) of radiation was planned over the 15 treatments, and we are only at 22, whereas intestinal distress is pretty much unheard of with less than 45. He thinks this may be the body warning us the radiation is affecting the intestines in an unexpected way. His biggest concern seems to be that of long term side effects.

So he put the radiation treatments on hold. Mayo is closed for Thanksgiving anyway, so we weren't going to get radiation Thursday, but we will be skipping Wednesday and Friday. This leaves us at 11 of 15 treatments. If everything calms down then we'll finish the remaining 4 treatments starting on Monday next week. If not, then the doctor feels it's likely we've done enough treatments to mitigate at least some of the pain. We talked about other options, such as treating just the most painful spot, but since we don't know which area is causing the problem we can't be sure we wouldn't end up doing more harm than good. Ideally things will just settle down so we can finish.

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.