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.
Saturday, August 13, 2016
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.
Sunday, July 31, 2016
Third Injection
Friday's injection went more or less the same as the previous two injections had. The fever and headaches are constant and last for about a day and a half. Karen suspects the neckaches are related to the headaches. And she thinks by sleeping so much, things might not be draining like they usually do when her allergies act up, which might be causing the headaches. By Saturday night everything had cleared up. I'm glad the headaches and fever aren't lasting longer each time. I think it just seemed like it was because the previous shot was several hours later in the morning than the first.
what Karen's been describing as joint and muscle pain, doesn't seem to be improving between injections. She says it's hard to describe and isn't actually sure if it's muscles or joints or bones, or what. She says it's just a pain inside. It also mostly affects her limbs, and does seem to be triggered by airflow. I noticed when the AC was on she was moaning from the pain and then when it turned off it started to get better, only to worsen when it turned on again. I thought maybe it was cold sensitivity like she had with the oxaliplatin had done during her first round of chemo, but she says it seems different. She does agree it's somehow tied to air flow, but probably not the temperature.
Karen didn't take the Zofran (ondansetron) for nausea preemptively this time around, but when she started to get a little nauseous she took it and everything was fine. So the olanzapine the night before with the Zofran the day of seems to be just the right amount of enough antiemetic to prevent the overpowering nausea she experienced the first time around. So at least we have that figured out. She also thinks a decongestant might have helped with the headache and neckache she experiences, but she took it near the end of the side effects so we'll try it sooner next time to see if it is indeed helping.
what Karen's been describing as joint and muscle pain, doesn't seem to be improving between injections. She says it's hard to describe and isn't actually sure if it's muscles or joints or bones, or what. She says it's just a pain inside. It also mostly affects her limbs, and does seem to be triggered by airflow. I noticed when the AC was on she was moaning from the pain and then when it turned off it started to get better, only to worsen when it turned on again. I thought maybe it was cold sensitivity like she had with the oxaliplatin had done during her first round of chemo, but she says it seems different. She does agree it's somehow tied to air flow, but probably not the temperature.
Karen didn't take the Zofran (ondansetron) for nausea preemptively this time around, but when she started to get a little nauseous she took it and everything was fine. So the olanzapine the night before with the Zofran the day of seems to be just the right amount of enough antiemetic to prevent the overpowering nausea she experienced the first time around. So at least we have that figured out. She also thinks a decongestant might have helped with the headache and neckache she experiences, but she took it near the end of the side effects so we'll try it sooner next time to see if it is indeed helping.
Friday, July 29, 2016
Second Injection
Karen's second injection was Wednesday. The sleepiness seems to be one of the hardest thing to shake when it comes to these new injections. She slept through most of Wednesday, and as such, seemed to sleep through the worst part of it. She didn't have the whole-body joint and muscle pains, although she did get some pains in her hands and neck. Karen thinks the joint and muscle aches she had Monday might be related to the chills she experienced at the same time, and since she was covered so well in bed at home, she didn't get them this time. I think the bigger part of it was just how deeply she was sleeping.
The headaches are another thing that really seem to drag on, even through most of Thursday. I'm not sure if it's because she's prone to migraines, but this is certainly a big source of discomfort. I'm concerned they may start to reach from one injection to the next. She's still getting fevers the day of the injection, and I thought the headaches may be tied to that. This one seemed to come on later in the day Wednesday and didn't break until after 3pm the next day.
That said, we managed the nausea perfectly this time around, despite the fact it was so severe on Monday. There's a pill she takes the night before that helps immensely. The drug is olanzapine, and it's actually an antipsychotic, but given at extremely low doses it helps prevent nausea. She took some Zofran (ondansetron) preemptively after the injection, and managed to go the entire day without nausea.
I guess I'll also mention that since Monday Karen's been having loose stools. This is different from straight out diarrhea and tends to be more regular. She goes once, maybe twice a day. It isn't a big concern for her, especially as she had been struggling a little with constipation before we started this trial. I asked her if she'd rather have loose stools or constipation, and she said loose stools.
She does seem to be feeling close to 100% the night before the next injection. Hopefully we can find some medication to help minimize the other side effects, but we don't see anyone special to help manage the symptoms like we did when we were on chemotherapy. We still have our treasure trove of pills from chemo, and we can always call and ask if it's ok to take something, but I liked sitting down with someone and talking about the symptoms before a treatment. It's something I'm looking into.
I realize it's Friday now, and she has gotten her third injection, but it's easier to say how things went after the fact, rather than post a constant stream of updates. If Karen did develop a dangerous side effect, I would certainly post about it right away, or if things really went south, I'd even call or text friends and family right away. Headaches make her sensitive to light, and the light of her phone - especially in a dark room - can bother her as well. Add in the hand cramps and pains and she might have a tough time responding to texts from friends and family, but please don't be offended or worried if you don't hear back from her right away on the days of her injections: Mondays, Wednesdays, and Fridays.
The headaches are another thing that really seem to drag on, even through most of Thursday. I'm not sure if it's because she's prone to migraines, but this is certainly a big source of discomfort. I'm concerned they may start to reach from one injection to the next. She's still getting fevers the day of the injection, and I thought the headaches may be tied to that. This one seemed to come on later in the day Wednesday and didn't break until after 3pm the next day.
That said, we managed the nausea perfectly this time around, despite the fact it was so severe on Monday. There's a pill she takes the night before that helps immensely. The drug is olanzapine, and it's actually an antipsychotic, but given at extremely low doses it helps prevent nausea. She took some Zofran (ondansetron) preemptively after the injection, and managed to go the entire day without nausea.
I guess I'll also mention that since Monday Karen's been having loose stools. This is different from straight out diarrhea and tends to be more regular. She goes once, maybe twice a day. It isn't a big concern for her, especially as she had been struggling a little with constipation before we started this trial. I asked her if she'd rather have loose stools or constipation, and she said loose stools.
She does seem to be feeling close to 100% the night before the next injection. Hopefully we can find some medication to help minimize the other side effects, but we don't see anyone special to help manage the symptoms like we did when we were on chemotherapy. We still have our treasure trove of pills from chemo, and we can always call and ask if it's ok to take something, but I liked sitting down with someone and talking about the symptoms before a treatment. It's something I'm looking into.
I realize it's Friday now, and she has gotten her third injection, but it's easier to say how things went after the fact, rather than post a constant stream of updates. If Karen did develop a dangerous side effect, I would certainly post about it right away, or if things really went south, I'd even call or text friends and family right away. Headaches make her sensitive to light, and the light of her phone - especially in a dark room - can bother her as well. Add in the hand cramps and pains and she might have a tough time responding to texts from friends and family, but please don't be offended or worried if you don't hear back from her right away on the days of her injections: Mondays, Wednesdays, and Fridays.
Wednesday, July 27, 2016
First Injection
On Monday Karen got her first injection of the drug at about 8:45am. Flu like symptoms seem to be common with these immune system oriented treatments. So around 1pm, over 4 hours after the injection, Karen started getting these flu like symptoms. It started with a headache and some neck cramping, followed by a fever, chills, and nausea shortly after that. And in another 15 minutes all of her muscles were shaky and cramping, along with miscellaneous aches and pains. All of this triggered a migraine, but she had her migraine medication with her and they OK'ed the use of it. She had to take several different medications to help with the nausea. They give her Tylenol about an hour before the shot, so she was able to take more as it wore off. The worst of it seemed to pass in an hour, and she slowly recovered over the day. She still had a small headache in the evening along with a little nausea, but after taking some more medication she seemed quite comfortable and was able to eat. A small dull headache seemed to follow her halfway into the following day, but by the end of the second day, the only symptom that persisted was sleepiness.
Today's treatment starts later in the day, perhaps because we don't have to be around so long for observation. Also, with the shorter observation period we will be back home before the symptoms hit. Hopefully, she'll be more comfortable at home. I believe we have all the medications they gave her Monday, at home already, from past rounds of chemo. I'm a little concerned her reaction may be worse this time around since the side effects of chemotherapy were worse the second time around. However, the nurse has suggested the symptoms might not be as bad. So I'm not sure what to expect.
Today's treatment starts later in the day, perhaps because we don't have to be around so long for observation. Also, with the shorter observation period we will be back home before the symptoms hit. Hopefully, she'll be more comfortable at home. I believe we have all the medications they gave her Monday, at home already, from past rounds of chemo. I'm a little concerned her reaction may be worse this time around since the side effects of chemotherapy were worse the second time around. However, the nurse has suggested the symptoms might not be as bad. So I'm not sure what to expect.
Monday, July 25, 2016
Clinical Trial
We saw the oncologist in May, but Karen had just gotten stitches, so the oncologist said she wasn't ready for more chemo. He did however say that when she was ready, there were a few clinical trials we might be interested in. We saw the oncologist again in June, a month later, but this time it was Karen who said she wasn't ready. We set things up to start a clinical trial in July, but when July rolled around and we saw the oncologist, we found out the trial had been put on hold. So we had to find another one. That trial starts today.
Both trials involve "activating" the immune system. This one in particular, studying recombinant super‑compound interferon (rSIFN‑co), hopes to enhance the immune response to cancer cells by activating certain white blood cells. After all we've been through, it seems obvious to us that this type of approach will be the future of cancer treatment. There's already been some amazing breakthroughs with other types of cancer using such approaches. It's just such a natural approach to fighting cancer.
This trial is only in phase 1. That means they are evaluating the safety and identifying the side effects of the treatment, all while trying to determine a safe dosage range. As such, we had to have a ton of tests done ahead of time, checking everything from Karen's eyes to her heart. We have 7 hours of observation today following the injection, with more blood tests throughout the day. Then there's more testing in 24 and then 48 hours. If all is good after the testing on Wednesday, there's another injection followed by 2 hours of observation. This will continue Mondays, Wednesdays, and Fridays. It sounds like the observation period will continue to decrease over time as they are more comfortable that Karen won't have an extreme reaction.
Both trials involve "activating" the immune system. This one in particular, studying recombinant super‑compound interferon (rSIFN‑co), hopes to enhance the immune response to cancer cells by activating certain white blood cells. After all we've been through, it seems obvious to us that this type of approach will be the future of cancer treatment. There's already been some amazing breakthroughs with other types of cancer using such approaches. It's just such a natural approach to fighting cancer.
This trial is only in phase 1. That means they are evaluating the safety and identifying the side effects of the treatment, all while trying to determine a safe dosage range. As such, we had to have a ton of tests done ahead of time, checking everything from Karen's eyes to her heart. We have 7 hours of observation today following the injection, with more blood tests throughout the day. Then there's more testing in 24 and then 48 hours. If all is good after the testing on Wednesday, there's another injection followed by 2 hours of observation. This will continue Mondays, Wednesdays, and Fridays. It sounds like the observation period will continue to decrease over time as they are more comfortable that Karen won't have an extreme reaction.
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