A long week

From Mike: Long-time reader, first-time poster. I've been given the green light to write posts from time to time on the blog. Sorry for the length of my first post, but a lot has happened in the last week.
"Executive summary": Linda has been switched to a different chemo drug (once-a-week) because the Aug 30 CT scan showed continuing growth of tumors. Also, Linda has been experiencing significant pain with breathing, though that is now being managed by pills (narcotic analgesics).

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September 6 (Tues) was scheduled as a chemo day, and we were also expecting to hear the results of the CT scan done the previous week. In the middle of the night before chemo, Linda was woken by sharp stabbing pains on the front-left side of her body, just under the ribcage. The pain gets worse with the deepness of her breathing, so it was just not possible for Linda to take any deep breaths without being in agonizing pain (or any breaths without much pain, for that matter). The pain was quite excruciating by the time we had to leave for the hospital.

Linda had experienced a similar pain before, during winter/early spring of 2010, happening a few times and lasting for several hours at a time. Unfortunately, we didn't make a connection to the cancer at the time. The pain then (right-back side, at lower lungs) was very bad, but the pain now is even worse. Two episodes stand out from 2010: the first time she ever felt the pain was right after Christmas toward the end of our drive down to Myrtle Beach and we had to pull over because the pain was so bad. It’s difficult to see a loved one in so much pain, but not be able to do much about it (aside from trying to massage, or running to the store to get medicine or hot pads/ice packs/etc ). Another bad episode found us in Lancaster visiting with Linda’s family. The pain came on quite suddenly on a Saturday night, with Linda in tears from the pain. Over-the-counter meds were little help, and Linda spent a few hours trying to sleep, moving back and forth from bed to floor, moving pillows around, trying every position she could think of to make the pain manageable. No success after several hours, so Linda took some percocets that Tricia happened to have and we left for home at around 4am.

Back to the present, Linda took a couple of Advil and we were on our way to the hospital. When we spoke with Dr. Cairoli, his top two suspects for the source of the pain were either a blood clot (pulmonary embolism, PE), or the cancer itself (the tumors having grown enough that the swollen liver is putting enough pressure on the diaphragm to cause this pain associated with breathing). Dr. C prescribed Oxycodone for the pain (pills every 3 hrs), and we were to call back Thursday morning if the pain was still there so he could get Linda in for another CT scan of her lungs to rule out a PE.

The other topic of discussion with Dr. C was results from the preceding week’s liver CT scans. The results were not encouraging, though not unexpected: tumors in the liver have continued to grow, meaning the Ixempra/Avastin was having little or no effect on the cancer. (I say “not unexpected” because over the last month Linda has had a pain around her liver and swelling in that area. The pain is not on the same level as this newer breathing pain; rather it hurts
when the area is touched, or when she leans back, etc.) So, a change in chemo drugs is necessary. Dr. C has decided to go back to Adriamycin, the “Red Devil” that was part of Linda’s treatment back in 2005. He feels this is the “biggest gun” in the arsenal, and best chance at getting this thing back under control.

Linda will go in for a MUGA scan on Monday to measure how her heart is working now. One of the side effects of Adriamycin is damage to the heart, so there is a maximum total dosage that a person can get over their lifetime (assuming there isn’t any ventricular damage before that). So this MUGA scan serves as a baseline (along with 2005’s MUGA) and we will monitor heart function as we go along with the Adriamycin.

The good news is that the Adriamycin treatments are much shorter: 30-45 minutes of premeds (steroids, anti-nausea) followed by an Adriamycin infusion that lasts only a minute (manually injected with syringe rather than via drip). We were in and out of the hospital in about three hours. The bad news is that the treatments will be weekly, and for now there will be no “off weeks” planned so that we can be as aggressive as possible in fighting these tumors.

We picked up the Oxy on the way home and Linda settled in for the next few days. The nurses expected the fatigue/nausea side effects from the Adriamycin to not be too bad, although it was tough to tell due to the breathing pain and associated Oxy meds. It was a long couple of days— Linda was mostly just in the recliner or bed, dealing with the narcotic effects (in quite a haze for much of the time) and the pain (which was not quite as bad with the Oxy, but still present). I don’t think Linda (or myself, by transitivity) slept longer than a couple of hours at a time from Tuesday through Saturday night. Her appetite was also not good, so it was difficult to get many calories in her.

We let Dr. C know on Thursday morning that the pain had not gone away. They set up a CT scan of the lungs for early afternoon (requiring a 4-hr fast, adding further difficulty to the caloric intake). The results of the scans came in immediately: no PE. This news was bittersweet: great that there’s no PE, but bad since this means that the cancer has grown enough to be causing a lot of pain, and this is a pain that won’t go away on its own. The hope now is that the new chemo will work and shrink the tumors enough to relieve the pain. It’s tough to see positives in the situation, but one nice point is that we now have a very clear indicator of whether this new chemo regimen is working: if the pain goes away, then we know it’s working.

Knowing that there is no PE, Dr. C changed Linda’s pain med prescription to Oxycontin, a similar drug, but with extended release (one pill every 12 hours) which means Linda should have much longer periods with lower pain levels. It might take a while to dial in the right dosage (balance between the pain and the narcotic effects on the mind), and in the meantime Linda will be supplementing the 12-hr pills with the 3-hr pills, as needed.

Thursday night we had a new scare. I had been taking Linda’s temperature at random times, just to make sure she didn’t develop a fever. (Fevers can be dangerous for chemo patients due to their compromised immune system, so fevers over 100.5 can mean a trip to the emergency room to figure out what the problem is and to get things (possible infections?) under control.) Linda’s temperature had been fine the last several weeks, but Thursday night she was running a
fever of 101.5 to 102. After making sure that it wasn’t a fluky measurement, we called the Dr’s office and talked to Doctor Lee, who was on call (around 11pm). He wasn’t too concerned due to the absence of other symptoms (no chills or shaking, etc.). Dr Lee prescribed Levoquin, an antibiotic (no ER trip necessary). I ran out to the drug store to pick up the Rx and by 2am Linda’s temperature was down to 100 and then back to normal the following morning.

I talked to Dr. C briefly the following day about the fever (while I was in to pick up the Rx for oxycontin). He wasn’t convinced that the drop in temperature was related to the Levoquin, and said that tumors can cause fevers like this (paraneoplastic fevers rather than neutropenic). So Linda is back off the Levoquin, and we’ll just continue to monitor her temperature.

Linda had some vomiting problems Friday night and Saturday, probably due to her body adjusting to new pain meds and different dosages. Good news is that the pain level on Saturday was much better than the previous days—after days of pain at a level of 8-out-of-10 (comparable to the worst pains after big surgeries) and occasional incoherent thoughts and speaking, Linda was down to a pain level of 4 or 5 and having much more normal conversations. Unfortunately, she wasn’t able to keep any food down during the day.

After sleeping off and on Saturday during the day, Linda finally started to get her appetite back late in the evening. She ate a little bit of banana and Ensure and kept it all down! We finally went to bed at 2am (our schedules are very off at the moment!), and were very pleasantly surprised to wake up at 8:30—both of us sleeping continuously for the longest stretch of time since 6 days earlier. Hopefully as the oxy dosage gets tweaked and Linda’s body gets used to
the meds, we’ll see lots of good sleep in the coming days and a return to a normal appetite. And in the bigger picture, we keep our fingers crossed that this revisit to the Adriamycin chemo will start working ASAP so that these pains will go away.