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.

Reopened

Last night, while Karen was sleeping, she rolled over onto her side and her incision opened up in two places. Lots of puss, fluid, and blood came out. There wasn't any pain associated with the mess, and the openings themselves weren't pulling apart like they had done previously, but we were still alarmed. It had opened right along the incision in two places. One was just less than a centimeter long and the other about 2 centimeters. We called Mayo first thing in the morning and once again they got us in the same day.

At first there was talk of opening the incision back up to make sure it was entirely drained, but in the end they decided to just drain what they could, stitch it shut, and send us home with an antibiotic (Augmentin). Despite two syringes of lidocaine, Karen still had an incredibly tough time with the pain as they put the stitches in. She was shaking (convulsing?) at one point, even to the points of getting cramps in her arms. We figured they'd probably want to do something, and had thought about applying the lidocaine patches we had previously had so much luck with, but didn't, which turned out to be a big mistake. Karen took some oxycodone directly after the stitching and we sat for about 20 to 30 minutes before heading out. We have a follow up in a week.

On the bright side. Karen has been awake a lot more since dropping down to lower doses of the pain patches. She's awake at least as much now as she was back at the beginning of the year, maybe even more so, which is quite encouraging.

Month At Home

Karen has been doing fine since her stitches were removed. Everything has held together just fine, and there's no sign of trouble. She's been sleeping a lot still. Some day it seems she's only up 4 to 6 hours. I am a little concerned, but she's been on such heavy pain meds, I'm leaning towards those as the culprit. She does seem to be awake more often as we decrease the dose, just not by as much as I would have expected.

Karen was on a 25 mcg/hr fentanyl patch back before the surgery in February, and is only today dropping back down to 25 mcg. Even as far back as November, 25 mcg/h wasn't enough to sufficiently control her pain. She had tried the next step up, 37.5 mcg, but found she was sleeping most of the day and opted to be in a bit of pain rather sleep her days away. As the pain continued to slowly increase, she tried the 37.5 mcg on and off. This is actually a major part of what triggered the oncologist's suggestion back in December to see the surgeon about having the mass removed. On April 1st she left the hospital using a 100 mcg/hr fentanyl patch, and a lot of break through. So progress has certainly been made in returning to 25 mcg. Hopefully as we return to these lower doses she'll get back most of her day.

The only other thing worth mentioning is how much more careful we have to be with gluten now that Karen's using the full length of her intestines. While she had her ostomy we could get away with so much. I guess because the food leaves the body so quickly? Whatever the reason, we've gotten a bit spoiled, being able to cheat with wheat products without much of a reaction. Going back to a stricter diet is a bit disappointing and frustrating. We had hoped that part of the reason she had to have such a strict diet before the ostomy was due to the cancer that had been removed from her colon, and thought maybe things had eased up for good. Now that her ostomy is reversed, it would appear that isn't the case.

Stitches Out

We went in yesterday and had the stitches removed. Everything is healing really well, and the stitches came out cleanly. Since they were such large stitches, he put Betadine on the wound after removing them and told us to wait 24 hours before applying dermabond. Karen's pain level is way down, and we're decreasing the dosage of the pain patches she's on.

Week At Home

We've both been pretty happy with Karen's release the day of the surgery. We already had a prescription for fentanyl patches and another for oxycodone - to help with breakthrough pain - but the surgeon had also prescribed a 5% lidocaine patch. It's a local anesthetic, which means it just affects the area it's applied to. He had said to cut strips and put it on either side of the wound. He also gave us a prescription for antibiotics.

We tried to get them filled at the hospital pharmacy before we left, but some issue with the insurance was stopping the lidocaine patches from being filled. I assumed we needed a preauthorization and left a message with the doctor. Remarkably, they found us in the hospital before we were completely discharged, and said that for some reason it's almost never covered. After all the delays with wound VAC, I was content paying out of pocket to have the painkiller now. It was going to be almost $100 for 10 patches though, and one of the doctors suggested we wait until tomorrow to see if Karen had $100 worth of pain.

The day after was actually quite painful for Karen. She was using the breakthrough medication as often as she could, which was every hour. I am willing to bet, if we had been in the hospital, they would have had her on a pain pump administering dilaudid. Karen quickly decided it was more than $100 of pain. I called a couple pharmacies to check stock and compare prices. Walgreens suggested I check GoodRx.com. The site not only compares drug prices at different pharmacies, but gives you discounts on those drugs. We managed to fill the prescription in about an hour for only $34.14. There were no charges to use the site or get the discount. What a great find. We've never had a prescription not covered before, and with a couple days of back and forth we probably could have got it, but I have no regrets in simply paying out of pocket to have it immediately, especially at this discount rate.

It made an amazing difference for Karen, and she was able to back off the oxycodone immediately. The patch is 12 hours on, and then 12 hours off. Karen was feeling so well on Tuesday that we forgot to put the lidocaine patches back on after being off for 12 hours, and did she start to hurt again! I'm surprised they haven't used this with her at the hospital before. It probably wouldn't have done anything for the huge HIPEC surgery she had had, but it probably would have helped with the previous surgery, when the mesh was put in. At least we know to ask for it in the future.

We had the one week follow up today. With such large caliber sutures, the body is much more likely to "reject" them, and "spit" them out. This is also more likely to occur in an area that's had a lot of trauma. So the idea was to take them out after just one week, and switch to dermabond. Our concern has always been that removing them so soon would allow the wound to open up again. On our visit, the surgeon said the tissue around the stitches looked quite healthy, and if we're up for leaving them in longer we can check on them again Tuesday. He removed the JP drain, which was the most irritating thing for Karen at this point. It's connected through a hole in the skin a couple inches to the left of the wound, and is held in place by stitches of it's own. So she's happy that's out now. Everything is looking good so far.