Tuesday was another appointment with the Oncologist. Dr Esplin started off by saying, "Wow, what a rough month." He had obviously heard about the seizures, pain meds, difficulty sleeping, low energy, etc. As per usual he asked about her pain levels, and Rory gave her usual response about balancing medications, some days a "10" and sometimes a "2". She always praises her entire team for keeping on top of things and making her as comfortable as possible.
Esplin started leaning towards reducing the dosage on the current chemo medication, saying that it sounded like with everything he'd heard about "We are beating you up too much."
About that time I reminded Rory that she had made a list of things to talk about with him. "Oh yeah ... sometimes my feet and ends of my fingers sort of hurt." He looked at her hands, noting the discoloration at the ends of her fingers and the sores forming between her fingers. She mentioned how difficult it was sometimes to hold onto cups and bowls because she either couldn't feel her fingers, or they hurt too much, or she was too "shaky." She had a laugh when telling him that we'd gone back to using plastic bowls and cups so that whey they get dropped occasionally, they won't break. Esplin commented that was yet more evidence that we needed to back off on the dosage, as these were exactly the symptoms they look for with this medication.
Rory mentioned almost in passing that she was grateful for the new nausea medication, because at least she hasn't been throwing up nearly as often as before even though the nausea is constantly there. "Wait, you're actually throwing up? OK, DEFINITELY need to back off on the dosage. In fact, we probably could think about you taking the rest of this week 'off' in addition to next wee." (The current medication is a 2-week-on, 1-week-off cycle and she was on day 4 of the second week.)
I had to remind Rory to show off her bruises. They were still there from the last sets of labs she had drawn, some "mystery bruses" on her arms, and for some reason the knuckles of her hands also look bruised. She had been told that one of the medications' side effects is a propensity to bruise, and she had first-hand proof of that and the slow healing process from her injection sites, other minor cuts or wounds. She made some joke that it looked like she had been beaten up, when of course she hadn't. Esplin turned that around to say that it seemed obvious to him that the new medication obviously WAS beating her up, and now he was more convinced than ever that she was to take the rest of this week "off" and then reduce the dosage when starting back up again after another week. He was obviously concerned, and maybe a bit flustered from the description of the symptoms he was dragging out of her.
Next it was his turn to ask her about specific symptoms. Hot/cold flashes? Oh yeah, those are the worst, having to leave the bedroom door window partially open even when it's 9 degrees outside and Preston has to sleep with a stocking cap on. Bowel movement? Yeah, those haven't been so great (TMI, I know). Energy level? Well, I did get to spend a couple of hours with my kids on Monday morning. "Lady, you do not complain enough." She tried to say that she felt like she complained way too much, but he turned it right around and said in his personal, loving way that she definitely does not complain too much, and in fact does not complain enough. And she was banned from chemo meds for the rest of the week, was to cut the dosage by a specified amount when starting up again and was to have a "very low threshhold" on the symptoms to likely cut the dosage AGAIN in short order.
During a review of the available labs, he said that most of the numbers looked really good to him. Kidney and liver functions were stable, blood cell counts were as expected. There was one number (I can't remember which; I'll have to go look that up) that was concerning, and which he said was further evidence that the dosage should be scaled back. He addressed concerns about cutting back too far, as we had to do with iBrance years ago, by saying that he had started her on a rather high dosage (2000mg twice a day, or 4000mg per day) because her tumor marker had spiked so high. Now that he was finally getting symptom feedback and lab results, she'll be cutting back to 3500mg initially and told her to drop back to 3000mg if ANY of her symptoms return. He said that he has very few patients who can tolerate 4000mg or even 3500mg for very long, and even 3000mg is a "good dose." It's not uncommon to drop all the way back to even 2000mg eventually. It all depends on symptoms, lab results and tumor marker response. All that to tell her to "complain more often" when has those symptoms! He was going to be interested in the lab results from the sample taken that day as well, to help round out the story.
We had a discussion about long-term use of this medication, trying to get some idea of how long we might expect to be making use of it. He had squeezed out every last month that he could from the Affinitor until we got to the point of radiation therapy and high tumor markers, but Rory had probably been on it for about a year longer than might have originally been predicted. I was curious about what his experience has been with patients on the Xeloda. Obviously he doesn't have a crystal ball and can't see definitively into the future, but I pressed him for averages or even anectodal results from his practice. He finally said that "months and months" is expected. Whether "months and months" turns into "years and years" will depend on her body's response and ongoing tracking of results.
As we were wrapping up the appointment, Rory mentioned that while it's difficult she is coming to terms with telling people that she's not going to get better, but rather we're trying to slow down how quickly things get worse. Emotionally she talked about how she's cherishing the time she has, how she's starting to look at some events as the "last time" for some of them. His response? "I just have to hug you." It's probably not all that common for other people's appointments to end with a hug, but that's the sort of doctor and person he his.
Since taking an early break from the Xeloda this week, I've definitely noticed immediate reductions in symptoms. Rory reports that she's getting feeling back in her fingers, and based on the number and frequency of calls and emails her energy level is definitely up. Yesterday she attended a bridal shower for a young lady we knew back in Oregon, and when Colton and I got back from our last soccer game of the season, we found that Rory and Kaeli had decided to go to a movie. Even after the long day, she mentioned to me last night that she was still hopeful of being able to attend church in the morning. Esplin said we could expect pretty immediate relief from some of the symptoms, and we should see a regular pattern of a decent week 1 on the medication, noticeable difficulties in week 2 on the medication, and then really look forward to a GOOD WEEK during the "off" time. If the end of this week is any indication, it appears that for once Rory's body is responding as expected. And now maybe we can get HER to complain a little more as we're watching for those symptoms. :+)
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