Sunday, August 28, 2016
Similar Week
The first week of this cycle was very similar to the first week of the first cycle. The muscle, bone, joint pains that seem to come from a sensitivity to a breeze have been less, but then again we've also been using ibuprofen from the start, and it does seem to help with such symptoms. There was less diarrhea and loose stools, but Karen didn't mind those side effects compared to the constipation she's been dealing with since her ostomy reversal. Overall, this first weeks' symptoms seems to be only slightly better than last time around. If I had to quantify it I'd say the side effects are maybe 15% to 20% less severe. And I'm not sure if it's not just because we are medicating better. Karen and I were also wondering if the severity of the side effects are in some way related to her white blood cell count - like how mosquito bites affect you less when your white blood cell count is lower.
Wednesday, August 24, 2016
First Injection, Again
Karen's first injection of this cycle started out well. She slept through what is usually the worst of it, but around 7 or 8pm she started to feel bad. And after I had just been saying how well she was doing and how smoothly things were going. I think part of it is that she was asleep and didn't take her acetaminophen and ibuprofen. I was worried that if I woke her up to take her pills, she'd be awake when her symptoms were at their worst. But it seems like it's going to be one of those things that are easier to stay ahead of than to try and catch up on later.
She said it was nearly as bad as her very first injection of the trial. There wasn't any nesaea this time though. This is most likely due to the olanzapine she takes the night before. But she ended up with a migraine around 8pm and had to take something for it. Her headaches seem to be connected to the neck pain and stiffness/tightness that she gets. Along with that she was also getting aches and pains like the first time around, and had a lot of sensitivity to moving air. I am still really puzzled by that one.
The symptoms improved over time, but slowly. I don't know if she just had a delayed reaction to this injection, or if it just took longer for things to clear up compared to the first time around. She didn't even seem to be feeling very well when she went to bed the second night, but seemed back to normal this morning. Of course she's pretty exhausted and worn out from the whole ordeal, but that's been a pretty consistent reaction to these injections.
She said it was nearly as bad as her very first injection of the trial. There wasn't any nesaea this time though. This is most likely due to the olanzapine she takes the night before. But she ended up with a migraine around 8pm and had to take something for it. Her headaches seem to be connected to the neck pain and stiffness/tightness that she gets. Along with that she was also getting aches and pains like the first time around, and had a lot of sensitivity to moving air. I am still really puzzled by that one.
The symptoms improved over time, but slowly. I don't know if she just had a delayed reaction to this injection, or if it just took longer for things to clear up compared to the first time around. She didn't even seem to be feeling very well when she went to bed the second night, but seemed back to normal this morning. Of course she's pretty exhausted and worn out from the whole ordeal, but that's been a pretty consistent reaction to these injections.
Monday, August 22, 2016
The Next Cycle
On the days we have labs beforehand, the appointments start around 6:30 in the morning. So we have to leave before 6 to get there on time - maybe even earlier depending on traffic. Which means sometimes we have to get up around 5. And we've gotten use to staying up late this past week. So Karen was having a bit of trouble staying awake to talk to the doctors. Which I was worried might concern them, however, her blood work shows an increase in both white blood cell and platelet counts. They're lower than they should be, but they've gone up since her last lab work two weeks ago, and are high enough to start the next cycle. So Karen was OK'ed to start the next cycle of the clinical trial. She's mostly slept through it so far, which I think makes it easier on her.
For the most part, I have been rather impressed with the care we've been getting with Mayo Clinic and their attention to detail. But there's something about this clinical trial that just feels a bit off. I'm not sure if the research coordinators are only working for Mayo, and exactly how they're connected to the outside research. But sometimes it doesn't seem to be on the same level of professionalism that we've gotten use to at Mayo Clinic.
Today they had a calendar they asked Karen to help fill out, listing which side effects she had when. It was a bit odd to do, not only after our week off, but without having asked us to make notes or even suggesting we mentally note what happened which times. I probably could have pulled up the blog but the researcher seemed to be in quite a hurry and didn't seem all that interested in specifics. Afterwards, even without looking anything up, Karen was remembering things that had happened at different times, but what were we to do then? Perhaps they aren't as interested in side effects at this stage of the trial, but it felt unprofessional. Also, everyone is brushing off this unusual sensitivity to air that Karen often gets with the injection. It reminds me a little of the cold sensitivity she would get while on FOLFOX. I wonder if this will become a bigger issue if this trial stretches into the winter months.
Another thing that concerns me is the eye exams they administer at the start of the cycle. They have had to call us back after our appointment both times, as they had forgotten the eye exam. The excuse is that it's not a usually part of a clinical trial's testing. But that makes me a little nervous as to why someone thinks it's necessary here. At the very beginning, before we even signed any consent forms, I asked the research team why it's part of the trial and if there was any risk of blindness. They said they had no reason for concern, and that the only reason it was being done is because the sponsor wanted it done. The other thing is no one seems confident when they're doing the eye exam. The first time around I believe we had a visit scheduled with an ophthalmologist, but it was canceled and a researcher ended up taking a quick look at Karen's eyes. Today they asked the oncologist to look and he said he was unfamiliar with the particular type of ophthalmoscope that was available, but took a look anyway. Perhaps they are trying to save us some time or money, but I think I would have prefered the ophthalmologist visits.
Looking at the schedule, it appears there are no 7 hour observation periods this cycle. All injections have 2 hour appointments. They give her the acetaminophen (Tylenol) 30 minutes before the injection, and then observe her for an hour after the shots. That leaves some room for preparing the injection or unexpected delays, which seem to happen quite regularly. In theory we should be able to get in and out in 1.5 hours, but 2 hours is fairly typical. The other thing I noticed about the schedule is that we have Labor Day off. I realize the entire cancer clinic is closed on this day, but something about it still rubs me the wrong way. We had asked if Karen had to come in for 7 hours on her birthday, but were told we had to follow the clinical trial's schedule. This is a potential life extending or life saving drug, so the explanation seemed quite reasonable, but now with Labor Day off... I have to wonder if it was really necessary to have her in on her birthday, and if so, if the 7 hour day couldn't have been swapped with a different 2 hour day.
For the most part, I have been rather impressed with the care we've been getting with Mayo Clinic and their attention to detail. But there's something about this clinical trial that just feels a bit off. I'm not sure if the research coordinators are only working for Mayo, and exactly how they're connected to the outside research. But sometimes it doesn't seem to be on the same level of professionalism that we've gotten use to at Mayo Clinic.
Today they had a calendar they asked Karen to help fill out, listing which side effects she had when. It was a bit odd to do, not only after our week off, but without having asked us to make notes or even suggesting we mentally note what happened which times. I probably could have pulled up the blog but the researcher seemed to be in quite a hurry and didn't seem all that interested in specifics. Afterwards, even without looking anything up, Karen was remembering things that had happened at different times, but what were we to do then? Perhaps they aren't as interested in side effects at this stage of the trial, but it felt unprofessional. Also, everyone is brushing off this unusual sensitivity to air that Karen often gets with the injection. It reminds me a little of the cold sensitivity she would get while on FOLFOX. I wonder if this will become a bigger issue if this trial stretches into the winter months.
Another thing that concerns me is the eye exams they administer at the start of the cycle. They have had to call us back after our appointment both times, as they had forgotten the eye exam. The excuse is that it's not a usually part of a clinical trial's testing. But that makes me a little nervous as to why someone thinks it's necessary here. At the very beginning, before we even signed any consent forms, I asked the research team why it's part of the trial and if there was any risk of blindness. They said they had no reason for concern, and that the only reason it was being done is because the sponsor wanted it done. The other thing is no one seems confident when they're doing the eye exam. The first time around I believe we had a visit scheduled with an ophthalmologist, but it was canceled and a researcher ended up taking a quick look at Karen's eyes. Today they asked the oncologist to look and he said he was unfamiliar with the particular type of ophthalmoscope that was available, but took a look anyway. Perhaps they are trying to save us some time or money, but I think I would have prefered the ophthalmologist visits.
Looking at the schedule, it appears there are no 7 hour observation periods this cycle. All injections have 2 hour appointments. They give her the acetaminophen (Tylenol) 30 minutes before the injection, and then observe her for an hour after the shots. That leaves some room for preparing the injection or unexpected delays, which seem to happen quite regularly. In theory we should be able to get in and out in 1.5 hours, but 2 hours is fairly typical. The other thing I noticed about the schedule is that we have Labor Day off. I realize the entire cancer clinic is closed on this day, but something about it still rubs me the wrong way. We had asked if Karen had to come in for 7 hours on her birthday, but were told we had to follow the clinical trial's schedule. This is a potential life extending or life saving drug, so the explanation seemed quite reasonable, but now with Labor Day off... I have to wonder if it was really necessary to have her in on her birthday, and if so, if the 7 hour day couldn't have been swapped with a different 2 hour day.
Sunday, August 21, 2016
Our Week Off
Karen had been wanting to visit some family down in Tucson that hadn't been able to make it up to see us here in Phoenix. She enjoys seeing her nephews and nieces in particular. I think spending her birthday in observation made her more feel more isolated than usual, even if we probably wouldn't have done much otherwise.
We spent two days - a little more than 24 hours - visiting in Tucson. She had said she'd be ok putting a mask on, but when it came down to it she opted not to. While part of the decision was certainly because she was feeling better, I think another part of it was not wanting to be remembered as being sick. In the end we had a good time, and she did remarkably well. A lot of times in the past, when we've traveled somewhere she's needed a lot of rest. And she did rest quite a bit once we got back, but I don't remember her doing this well in a long time.
After sleeping a bit heavily for the next day or so, she rebounded quite well. I don't remember the last time there was a week where she was this active. I wonder now if she felt compelled to do more on her week off knowing it'd be another month until she'd feel that well and have that much free time again. We did push it a little near the end of the week, going out a little more and staying up a bit late. Either way, it was a very happy week for us.
We spent two days - a little more than 24 hours - visiting in Tucson. She had said she'd be ok putting a mask on, but when it came down to it she opted not to. While part of the decision was certainly because she was feeling better, I think another part of it was not wanting to be remembered as being sick. In the end we had a good time, and she did remarkably well. A lot of times in the past, when we've traveled somewhere she's needed a lot of rest. And she did rest quite a bit once we got back, but I don't remember her doing this well in a long time.
After sleeping a bit heavily for the next day or so, she rebounded quite well. I don't remember the last time there was a week where she was this active. I wonder now if she felt compelled to do more on her week off knowing it'd be another month until she'd feel that well and have that much free time again. We did push it a little near the end of the week, going out a little more and staying up a bit late. Either way, it was a very happy week for us.
Saturday, August 13, 2016
Last Injection for the Cycle
Friday's injection went smoothly. Perhaps the smoothest yet. Karen still got some flu like symptoms, but it didn't seem to be much more than that bleh feeling you get when you're sick. The difference between the first shot and this last one is huge. The thing we're wondering now is how rough the injection will be after our week off.
We had more testing done Thursday, which mirrored the testing we had the day after the first injection. A lot of these blood samples taken go directly to the researchers, and we never see their results. None of the test results from Wednesday or Thursday were available to us. We were hoping one of Friday's tests would at least give us Karen's white blood cell count so we'd know how careful to be on our week off, but that didn't turn out to be the case. We even went as far as asking if they could do a blood test that would tell us the white blood cell count, but no one wanted to run one. The researcher working with Mayo said we should expect the white blood cell count to rebound quickly, and that he didn't think the drop was necessarily from the injections. The oncologist said the opposite; there's no reason to expect different results Friday than we got Monday, as nothing had changed, and to just follow the usual precautions for a low neutrophil count: wear a mask when visiting family, avoid crowded public locations, and wash your hands frequently.
We had more testing done Thursday, which mirrored the testing we had the day after the first injection. A lot of these blood samples taken go directly to the researchers, and we never see their results. None of the test results from Wednesday or Thursday were available to us. We were hoping one of Friday's tests would at least give us Karen's white blood cell count so we'd know how careful to be on our week off, but that didn't turn out to be the case. We even went as far as asking if they could do a blood test that would tell us the white blood cell count, but no one wanted to run one. The researcher working with Mayo said we should expect the white blood cell count to rebound quickly, and that he didn't think the drop was necessarily from the injections. The oncologist said the opposite; there's no reason to expect different results Friday than we got Monday, as nothing had changed, and to just follow the usual precautions for a low neutrophil count: wear a mask when visiting family, avoid crowded public locations, and wash your hands frequently.
Wednesday, August 10, 2016
Birthday Day Injection
Today's clinical trial injection is designed to mirror the first day's injection in terms of tests. That means about an hour of testing before the injection, and then 7 hours of observation along with frequent testing of vitals and blood samples. When we arrived at Mayo Clinic the staff gave Karen a tiara to wear, and the room had Happy Birthday decorations up. A little later a bunch of the staff came by with a fancy looking chocolate cupcake with butter creamcheese frosting from Gigi's Cupcakes - the frosting's as tall as the cupcake itself - and a Happy Birthday card signed by everyone, then sang happy birthday to her. The room we get is always a private room with a bed in it Karen can lay down in. The room has a TV with hundreds of channels, so there's always something to watch. Today we have 6 different channels of Olympics for Karen to bounce between, which keeps things interesting.
For the third week in a row Monday's injection was hard on Karen. It's the same injection each time, so we're not exactly sure what's going on. I think the extra time off makes the body react a little more strongly to the injection. The shots leave Karen pretty worn out, so another possibility could be that the Monday's sleepiness makes the Wednesday injection easier to sleep through, and Wednesday's does the same for Friday. Karen missed breakfast on Monday, so her theory is that perhaps she's just missing breakfast on Mondays and it hits her harder if she hasn't eaten. Either way she continues to recover quicker from the injections, and was feeling pretty good Tuesday.
Karen's platelets have continued to test way below reference range, and now, Monday's blood work shows there's been a sudden drop in her white blood cell count. They've recommended we avoid places with a lot of people, and that if we do go out in public, to wear a mask. We only have one more treatment before Karen's week off, so hopefully her white blood cell count recovers quickly so we can get out and do things.
For the third week in a row Monday's injection was hard on Karen. It's the same injection each time, so we're not exactly sure what's going on. I think the extra time off makes the body react a little more strongly to the injection. The shots leave Karen pretty worn out, so another possibility could be that the Monday's sleepiness makes the Wednesday injection easier to sleep through, and Wednesday's does the same for Friday. Karen missed breakfast on Monday, so her theory is that perhaps she's just missing breakfast on Mondays and it hits her harder if she hasn't eaten. Either way she continues to recover quicker from the injections, and was feeling pretty good Tuesday.
Karen's platelets have continued to test way below reference range, and now, Monday's blood work shows there's been a sudden drop in her white blood cell count. They've recommended we avoid places with a lot of people, and that if we do go out in public, to wear a mask. We only have one more treatment before Karen's week off, so hopefully her white blood cell count recovers quickly so we can get out and do things.
Saturday, August 6, 2016
Second Week of the Trial
Monday's injection seemed a little rougher for Karen than Friday's. Maybe it was the extra day off, or maybe she just felt it a bit more because she was less drowsy than she had been the previous week. Karen tested out her theory by taking both a decongestant and using a nasal spray, but neither helped with the headaches. In fact, it got so bad she had to take migraine medication again. So maybe it isn't related to her sinuses after all?
Wednesday we got to see our oncologist before the injection. We talked about the side effects, and he said Karen's sensitivity to the wind was a normal part of the flu like immune response. However, it's not something Karen or I have ever experienced with a flu before. While he's fluent in English the doctor has a slight accent, so I thought it might be a language barrier. I made a second attempt to describe the side effect using different words and phrases, but he insisted it was a normal flu like symptom. He said adding ibuprofen to our regimen would help. A couple months back, we met with someone filling in for our usual palliative care doctor. He suggested Karen stopped taking ibuprofen for pain, even if it meant using more oxycodone, because the ibuprofen had the potential to cause liver problems in the long run. It seems everyone else is fine with Karen taking ibuprofen; so we've added that back into our regimen and it's made a big difference. And not only with the chills, headaches, etc, but with the quite intense bone, joint, and muscle pain caused by a sensitivity to airflow. This made Wednesday's injection the easiest to deal with yet.
And following that, Friday seemed to go slightly better than Wednesday. It seems that, as we had hoped, the symptoms seem to be lessening with each injection. Not by a lot, but certainly by some. This is such a relief. In our experience with chemotherapy, the symptoms worsened with each treatment, and it really makes you dread going in for the next one. This is much easier to deal with.
At the start of the week we had some bloodwork done. The only thing that seems to be getting worse as time goes on is Karen's platelet count. It just keep dropping. However, this seemed to start the week before we started the clinical trial. I'm not sure if it was just a fluke right before we started the trial and then the injections have continued this trend, or if it's something else unrelated to the trial. In contrast, Karen's white blood cell count seems to have gone up after the first week. I don't know if this is the body's natural response to these injections and the flu like symptoms they cause, but I'm quietly hoping this means something is working.
We have one more week of treatments, then we have a week off. To mirror the first 7 hour observation period, Karen will have another 7 hour observation period - on her birthday of all days - where they will repeat all the testing they did with that first injection. After the third week, we get one week off, which completes a "cycle" of treatment. Then after two cycles, Karen will get another CAT scan and we'll see if the injections have had any noticeable effect on the cancer.
Wednesday we got to see our oncologist before the injection. We talked about the side effects, and he said Karen's sensitivity to the wind was a normal part of the flu like immune response. However, it's not something Karen or I have ever experienced with a flu before. While he's fluent in English the doctor has a slight accent, so I thought it might be a language barrier. I made a second attempt to describe the side effect using different words and phrases, but he insisted it was a normal flu like symptom. He said adding ibuprofen to our regimen would help. A couple months back, we met with someone filling in for our usual palliative care doctor. He suggested Karen stopped taking ibuprofen for pain, even if it meant using more oxycodone, because the ibuprofen had the potential to cause liver problems in the long run. It seems everyone else is fine with Karen taking ibuprofen; so we've added that back into our regimen and it's made a big difference. And not only with the chills, headaches, etc, but with the quite intense bone, joint, and muscle pain caused by a sensitivity to airflow. This made Wednesday's injection the easiest to deal with yet.
And following that, Friday seemed to go slightly better than Wednesday. It seems that, as we had hoped, the symptoms seem to be lessening with each injection. Not by a lot, but certainly by some. This is such a relief. In our experience with chemotherapy, the symptoms worsened with each treatment, and it really makes you dread going in for the next one. This is much easier to deal with.
At the start of the week we had some bloodwork done. The only thing that seems to be getting worse as time goes on is Karen's platelet count. It just keep dropping. However, this seemed to start the week before we started the clinical trial. I'm not sure if it was just a fluke right before we started the trial and then the injections have continued this trend, or if it's something else unrelated to the trial. In contrast, Karen's white blood cell count seems to have gone up after the first week. I don't know if this is the body's natural response to these injections and the flu like symptoms they cause, but I'm quietly hoping this means something is working.
We have one more week of treatments, then we have a week off. To mirror the first 7 hour observation period, Karen will have another 7 hour observation period - on her birthday of all days - where they will repeat all the testing they did with that first injection. After the third week, we get one week off, which completes a "cycle" of treatment. Then after two cycles, Karen will get another CAT scan and we'll see if the injections have had any noticeable effect on the cancer.
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