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.
Tuesday, November 1, 2016
Monday, October 24, 2016
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.
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.
Friday, October 14, 2016
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.
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.
Monday, September 19, 2016
Results
Karen had thought about pulling an all nighter to get some projects done that she had been interested in doing, but we only stayed up a little later than normal. This turned out to be a decent decision because her treatments have been canceled and she is getting another week off. The scans have shown growth of several millimeters for many of the implants, along with new implants that weren't seen before. This has been passed off as "no significant changes" or sometimes even as "stable" in the past, but it's enough to tell the researchers the treatments likely aren't working. There are some cases where inflammation due to an immune response makes it appear as if the cancer were growing, but they don't feel that's the case here.
Karen asked and she is still the only person to undertake this clinical trial at Mayo. But even if others were on it I don't know if they would have been able to tell us if it were working for anyone else. The oncologist says going back on FOLFIRI is an option, but Karen feels strongly opposed to that idea. The oncologist believes the cancer was growing more slowly on while Karen was on traditional chemotherapy. I suppose there's even a chance things were worse because we were on this trial - a possibility I had never considered.
Directly afterwards I asked Karen how she felt, and she said fine, "but maybe it hasn't sunk in yet." Which is what's happened more as the day progressed. By evening she had become quite upset. Not to the point of tears, but to the point where it's certainly affecting her mood. She talked about it a little, and that helped. But what seemed to help the most was getting back to work on her projects. I guess the distraction is good.
There are other clinical trials we may be interested in. Right now the type of chemotherapy administered to cancer patients is based on the origin of the cancer. So Karen gets chemotherapy treatments that have historically performed best against colon cancer. This is FOLFOX and FOLFIRI. However, there are studies underway to use genetic testing on the cancer to catalog the gene mutations and choose a chemotherapy based on the specific genetics of the cancer. There is good reason to believe this is the better approach, but there still isn't a lot of data on it. One of the clinical trials Karen might qualify for is this sort of treatment. They'd do a fine-needle aspiration on one of the nodules suspected to be cancer, and map out it's dna. Based on the finding we'd try a specific chemotherapy treatment that's expected to perform better on Karen's particular variant of cancer.
Karen asked and she is still the only person to undertake this clinical trial at Mayo. But even if others were on it I don't know if they would have been able to tell us if it were working for anyone else. The oncologist says going back on FOLFIRI is an option, but Karen feels strongly opposed to that idea. The oncologist believes the cancer was growing more slowly on while Karen was on traditional chemotherapy. I suppose there's even a chance things were worse because we were on this trial - a possibility I had never considered.
Directly afterwards I asked Karen how she felt, and she said fine, "but maybe it hasn't sunk in yet." Which is what's happened more as the day progressed. By evening she had become quite upset. Not to the point of tears, but to the point where it's certainly affecting her mood. She talked about it a little, and that helped. But what seemed to help the most was getting back to work on her projects. I guess the distraction is good.
There are other clinical trials we may be interested in. Right now the type of chemotherapy administered to cancer patients is based on the origin of the cancer. So Karen gets chemotherapy treatments that have historically performed best against colon cancer. This is FOLFOX and FOLFIRI. However, there are studies underway to use genetic testing on the cancer to catalog the gene mutations and choose a chemotherapy based on the specific genetics of the cancer. There is good reason to believe this is the better approach, but there still isn't a lot of data on it. One of the clinical trials Karen might qualify for is this sort of treatment. They'd do a fine-needle aspiration on one of the nodules suspected to be cancer, and map out it's dna. Based on the finding we'd try a specific chemotherapy treatment that's expected to perform better on Karen's particular variant of cancer.
Sunday, September 18, 2016
Opposite Week
Last time Karen got a week off she had a good amount of energy and was actually quite active. This time around was nearly the opposite; she slept a lot and felt off most of the week. She even vomited Thursday. She managed to go two cycles of the clinical trial without puking once and now it happens on her week off. We figure she must have been fighting something all week because she didn't start to feel better until late Friday.
As I mentioned before, the CAT scan was Friday, but we won't be able to find out anything about the results until we see the oncologist Monday morning. I know we shouldn't expect much, this being a stage 1 trial, on the other hand it's hard not to get your hopes up. We talked about it briefly, and she says she doesn't have expectations one way or the other, nonetheless I'm worried she'll be overly disappointed if the scan doesn't show improvement. She doesn't seem to be nervous or thinking about it much, but she's also been keeping herself busy with things she wasn't able to do earlier in the week.
As I mentioned before, the CAT scan was Friday, but we won't be able to find out anything about the results until we see the oncologist Monday morning. I know we shouldn't expect much, this being a stage 1 trial, on the other hand it's hard not to get your hopes up. We talked about it briefly, and she says she doesn't have expectations one way or the other, nonetheless I'm worried she'll be overly disappointed if the scan doesn't show improvement. She doesn't seem to be nervous or thinking about it much, but she's also been keeping herself busy with things she wasn't able to do earlier in the week.
Tuesday, September 13, 2016
A Short Week
As I mentioned before, we would be getting Labor day off. This means Karen's first injection this week wouldn't be until Wednesday. Despite the side effects diminishing with each injection, when Karen started the second cycle her first injection was nearly as bad as the very first. So I was a bit concerned that with Monday off - making it 5 days between injections - that Wednesday's injection would be tough on her as well. Unfortunately, that did turn out to be the case. Which also meant Friday's injection was a bit rough as well. And some of the symptoms, particularly the painful sensations from air blowing over her skin, seems to have come back Sunday evening. Even on Monday she seemed overly fatigued. Karen's bloodwork hasn't shown the same drop in white blood cell count we saw the first cycle. This is almost certainly due to the extra day off, and quite possibly tied to the severity of her symptoms.
We have bloodwork and a CAT scan scheduled for Friday, but we won't find out if the injections have been working until Monday. Since it's easier to cancel an appointment than to try and schedule one at the last minute, they've already got Karen scheduled for her third cycle of injections. While on chemotherapy we never got scheduled more than a week ahead of time, but we seem to be scheduled a whole month ahead while on clinical trials. I assume this is to make sure they don't miss a treatment due to scheduling, but it feels strange to click on your appointment list and see it scheduled out all the way through October 7th.
We have bloodwork and a CAT scan scheduled for Friday, but we won't find out if the injections have been working until Monday. Since it's easier to cancel an appointment than to try and schedule one at the last minute, they've already got Karen scheduled for her third cycle of injections. While on chemotherapy we never got scheduled more than a week ahead of time, but we seem to be scheduled a whole month ahead while on clinical trials. I assume this is to make sure they don't miss a treatment due to scheduling, but it feels strange to click on your appointment list and see it scheduled out all the way through October 7th.
Sunday, September 4, 2016
The Second Second Week
This was the second week of the Karen's second cycle in the clinical trial. Much like the previous week, this week went very similar to that of the first cycle. Most of the symptoms seem to be slightly less severe than the first time around. For example, she still gets headaches but they don't seem to be triggering migraines, so she's better able to use her phone for texts. However, it turns out she's even more sleepy and fatigued this cycle. Wednesday's injection was the worst in regards to this. She went to bed around her usual time, maybe a bit early, but slept for around 20 hours. Then, after being up a few hours, slept again until Friday morning. I was starting to get quite concerned, but Friday's injection was much more typical.
At the end of the first week we got to talk to our research contact and one of the things that came up was the early appointments. He said there's no problem moving them further into the day. We thought noon would make things easier for us and they adjusted all of our future appointments accordingly. We were quite happy with the change and thought it would make getting to the appointments much easier on us. And it did, but it had one unintended side effect. During the first cycle, Karen would be fine the evening before her next injection, but now, with her injections happening 3 to 4 hours later in the day, she isn't recovering completely until bedtime. I'm not sure if the extra sleeping is related this schedule change, or if it's just compounding the issue. Karen says that for now she still prefers it later in the day - and compared to those 6:30am appointments across town, who wouldn't? - but maybe we'll aim for something in between for the next cycle.
At the end of the first week we got to talk to our research contact and one of the things that came up was the early appointments. He said there's no problem moving them further into the day. We thought noon would make things easier for us and they adjusted all of our future appointments accordingly. We were quite happy with the change and thought it would make getting to the appointments much easier on us. And it did, but it had one unintended side effect. During the first cycle, Karen would be fine the evening before her next injection, but now, with her injections happening 3 to 4 hours later in the day, she isn't recovering completely until bedtime. I'm not sure if the extra sleeping is related this schedule change, or if it's just compounding the issue. Karen says that for now she still prefers it later in the day - and compared to those 6:30am appointments across town, who wouldn't? - but maybe we'll aim for something in between for the next cycle.
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