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.

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.

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.

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.