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Letters From Cancerland: A Different N of 1
By: April Nelson; Published: June 21, 2016 @ 1:23 pm | Comments Disabled
“You’ll be an N of 1,” said Tim, my oncologist.
I winced inside. My oncologist had no way of knowing it, but he had inadvertently evoked a Beacon column written by Arnie Goodman [1], who died in 2014.
Arnie Goodman was a favorite of mine because he didn’t mince words about his condition, which grew increasingly dire. In his column, “N of 1,” [2] Arnie explained that he and his oncologist were trying a new drug, Empliciti [3] (elotuzumab), in combination with Revlimid and dexamethasone to see if it would slow down his myeloma. Empliciti was an investigational drug at the time, not yet approved anywhere. Arnie did not qualify for any of the ongoing clinical trials, but was able to get access to the treatment through a “compassionate use” program. In other words, Arnie was a test group of one.
When Tim dropped the N of 1 phrase into our discussion, he was talking about a different test than compassionate use. After objecting so vehemently months ago to combining Pomalyst [4] (pomalidomide, Imnovid) with Kyprolis [5] (carfilzomib), Tim is now ready to try that drug in a triplet combination, with dexamethasone being the third baby in that bunch.
My lawyer skill kicked in. “I’m cross-examining you,” I said, and proceeded to grill him on his change of position.
Why the change? Because my numbers, especially my M-spike, continue to be a flat line. The M-spike is not getting worse, but it is not improving either. My IgG, stable for months, is inching up.
But the biggest factor was not my numbers, but the fact that my quality of life continues to sink. As I wrote last month [6], I now know the meaning of “chronically ill.” The tipping point for Tim was my saying that when I was in the Pacific Northwest earlier this month, I was aware of a sizable and substantive decline in my ability to play with my granddaughter. Given that I had been out there less than a year ago with very different results, this caught Tim’s ear.
The decision to add Pomalyst is not yet set in stone. I head to the Mayo Clinic later this month and will get my oncologist there to weigh in. Given that he first suggested it, I do not anticipate resistance. A more formidable challenge will be getting my insurance company to pay for the drug on top of the Kyprolis. I have great coverage, but I am realistic enough to know the insurance company might balk.
It is the quality of life factor that caused Tim to say I’d be an N of 1 with this drug therapy. Not, he explained, that it was an untested combination. This combo has been tested with good results. But the outcome in those trials was length of survival. That is the measurement in any drug trial: length of survival.
Instead of survival, the outcome in my situation is quality of life. And that makes me an N of 1.
My oncology appointments are usually times for reflection and this one was no exception. As I sat through Day 1 of Round 12 of Kyprolis, I thought about quality of life and the lengthy trip I had just finished.
The first two weeks of June took me out to Seattle for an international conference and then on to the Portland area (Vancouver, Washington) to spend time with my family. The trip was a test of sorts, another N of 1, with the measurable outcomes being my stamina and tolerance for traveling solo.
Let’s just say the results of my experiment were sub-par. It is quite possible that I will not take an extended trip by myself ever again. It is also conceivable that lengthy trips even with my husband Warren may be out of reach sooner than I had hoped. That being said, the other aspects of the trip, especially the time spent with my sons, daughter-in-law, extended family, and my precious granddaughter, were priceless.
Towards the end of my stay, we were on the Reed College campus for Reunion Day, because it featured a family fun area. (Both my older son and daughter-in-law are Reedies.) Two bubble masters were putting on a show on one lawn, setting afloat numerous bubbles ranging from large to immense. As the bubbles sailed across the lawn, backlit into gold by the sun, children screamed in delight and went racing after them.
I just sat and watched the gold streams lift into the sky. It was the perfect metaphor for this N of 1. Bubbles are ephemeral and, if not popped by a child’s hand, just disappear into ropy nothingness. But during their brief and shining existences, how they glow.
April Nelson is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of her previously published columns here [7].
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
Article printed from The Myeloma Beacon: https://myelomabeacon.org
URL to article: https://myelomabeacon.org/headline/2016/06/21/letters-from-cancerland-a-different-n-of-1/
URLs in this post:
[1] Arnie Goodman: https://myelomabeacon.org/author/arnold-goodman/
[2] “N of 1,”: https://myelomabeacon.org/headline/2014/05/13/arnies-rebounding-world-n-of-1/
[3] Empliciti: https://myelomabeacon.org/tag/empliciti/
[4] Pomalyst: https://myelomabeacon.org/tag/pomalyst
[5] Kyprolis: https://myelomabeacon.org/tag/kyprolis/
[6] last month: https://myelomabeacon.org/headline/2016/05/18/letters-from-cancerland-winding-down/
[7] here: https://myelomabeacon.org/author/april-nelson/
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