It's been a while since I've given a real update on Abi's health. Perhaps it's time for more than a tweet.
First the medical stuff.
We mentioned last week that the immunotherapy isn't having the effect we hoped it would have. To recap, the disease has progressed. Some tumors are larger than they were compared to the baseline scan, and there are spots that weren't there before. Dr. McGaughey said the progression wasn't "explosive," but it was undeniable. There are also some areas where the disease may have regressed a bit, but it's clear that the first few months of immunotherapy didn't cure our girl, and didn't really show enough to give us confidence that it will. It may in the long run, and we're not giving up on it. But we were certainly hoping for better.
She'll continue the immunotherapy, but she'll also begin a new chemo regimen this week.
This is a different sort of chemo than she was on for over a year. The side effect profile is far less daunting than her old treatment. Less likely to cause nausea, which was the absolute toughest thing for her to deal with. There are some challenges to deal with in terms of blood counts, and how that might affect the immunotherapy, but there are studies that show this is a safe combination. Finally, Dr. McGaughey told her she will not lose her hair again. She's skeptical (but I'm not). Abi will do this chemo from home - with a pill - so she won't be heading to the treatment room for three solid days every three weeks. All good stuff.
As for it's effectiveness, it's encouraging. There are actual studies that seem to apply directly to Abi's situation - pretty unusual for high-grade neuroendocrine cancer since it's so rare. Fifty percent of the neuroendocrine cancer patients that went on this treatment, after having been on the treatment Abi was on, either saw their disease regress, or remain stable. This isn't a Hail Mary pass. There's real reason for hope.
But there's more to the immunotherapy story. One of the risks is that the immune system, once it's turned loose to attack the cancer, will begin to attack healthy tissue, as well. In Abi's case, it's gone after her thyroid. Her thyroid simply isn't doing anything right now.
This is manageable with medication, but it's having an effect. Under the best of circumstances, hypothyroidism can make a person tired. Abi's already sleep-deprived due to the pain, so the added fatigue from a non-functioning thyroid has been rough on our girl. The doctors are working to finding the right dose of medication to get her T3/T4 levels back to where they should be, but it takes time. And we're not there yet.
Finally, a word about Abi's pain. It seems that Abi's gone through some phases in describing how she feels. A year ago, she was "good." Six months ago, she would almost always tell us she was "fine" when we'd ask her how she was. In April or so, that shifted to "I'm okay." And in the past month or so, she almost aways says, "Not great."
Things appear to be getting tougher for our girl.
From the outside looking in, the pain seems unrelenting. It seems to be most intense in the morning. While it seems to ease a little as the day goes on, it never goes away, even with medication. Where it once seemed to be pretty localized in her lower back, it's more general in nature now - her hips, her shoulders, her ribs. And as I mentioned before, it definitely affects her ability to sleep. (It's a terribly cruel cycle.)
At our last meeting, we asked Dr. McGaughey whether radiation might help to alleviate some of the pain, like it did in December. He suggested it might, and is willing to refer Abi back to the radiation oncologist for evaluation. Abi is increasingly receptive to the idea, so there's a chance she'll be trying that in the coming weeks. More to follow.
So the bullet points:
- Immunotherapy - meh...
- New chemo being added to immunotherapy - less time consuming, and fewer side effects.
- Continued pain. Considering additional radiation.
- Working to get thyroid levels right to improve energy levels.
- Still not getting enough sleep.
That's the medical stuff, but there's one last thing you should know.
Abi has absolutely retained her determination to rally. To be there for those she loves - - and to live every day as fully as she possibly can.
It's downright amazing to watch, as she simply refused to let her disease get in the way of playing florist, bridesmaid, and officiant for her beloved brother and beloved sister-in-law's wedding a few weeks back.
Last week, she had all of her college roommates in town and, with a team of really dedicated supporters, put together a Christmas in July celebration for 40(!) guests worthy of a Martha Stewart magazine cover. (Thanks John, Marcia, Nate, Jackie, roommates, roommate significant others, Norfolk Fire Department, and everyone else who had a hand in that one...it was spectacular!)
And this weekend, she's heading up to Ocean City for a bachelorette party in honor of her tier-one cousin.
She's got a trip to Asheville planned with the Mayers in mid-August, a wedding at the end of the month, and did I mentioned she's as determined as ever to get to Charlottesville - soon!
So the disease may be taking it's toll on her health, but never, ever on her spirit.
Prayers for pain relief, rest, the miracle of a cure, energy to do all the stuff she has planned, and the continuing miracle of living really, really well.
P.S. Early morning post. Please excuse any typos, run-ons, etc. I'll clean it up later. Probably.