Letters From Cancerland: A Different N of 1
“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, 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,” Arnie explained that he and his oncologist were trying a new drug, Empliciti (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 (pomalidomide, Imnovid) with Kyprolis (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, 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.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
Aloha April,
As always, I am at a loss as to what to say to someone whose health is declining. Ironic isn't it? I desperately don't want to offend you or make you feel bad in any way, but what I want to say is difficult without being direct.
First of all, I want to applaud you for sharing with us so openly about your journey. As Arnie and Pat demonstrated, this helps those of us who are on the same path to better understand what lies ahead. As you know, it's not a well lit path, and that makes us all afraid. Your light helps to take away some of that fear of the unknown.
Secondly, I think that we all are actually an N of 1. My growing understanding of myeloma, and all cancer for that matter, is that every person's cancer is different in lots of ways. Your unique experience adds volumes to the communal knowledge. Not just of how to treat myeloma, but more importantly, how to live with myeloma.
Being an N of 1 is an opportunity to be an explorer. You are the first one to experience this treatment in this way. Maybe it will make a miracle for you! Yes, you have lost a lot, but you still have so much. You can still feel the love of that precious granddaughter and you can still share with her your love. I know that sounds airy fairy, but I think it is what will keep me going when I am in your place.
Please don't be offended. I am not trying to minimize your, or anybody else's, suffering. I know it hurts. I know it sucks. But I think that open and honest talk with our friends and loved ones is what will get us through it. Even though we have never met, count me among your friends.
Thank you again for shining that light. Oh yeah, you forgot one thing about those awesome bubbles: each one is unique.
Aloha
Tom
April,
Whenever I read your essays, I am always reminded of what a good and true friend you must be ... and what a good writer you are.
After reading today's column, all I could think of was the last line in E.B. White's classic "Charlotte's Web". Remember to substitute the word "April" whenever you see the word "Charlotte".
"It is not often that someone comes along who is a true friend and a good writer. Charlotte was both."
Warm regards,
Will Kane
April, I know we are in very different places in our journey (I was diagnosed April 2015; high risk del(17)), but if it gives you some hope, I just completed 5 cycles of Kyprolis, Pomalyst, and dex with good results. My M-spike dropped 90% preparing me for an auto transplant. I did not respond well to my first treatment regimen, which was Revlimid, Velcade, and dex. In any case, thanks for your bravery in sharing with us and best of luck with the new treatment.
Hi April,
Thanks for another excellent column. While I was reading it, I was thinking many of the things that Tom expressed so well in his comment to you. So I hope I don't offend you by seconding what Tom said.
I'd just like to add that I think it takes a special form of courage to be so open and honest about what you're going through. Your courage helps all of us. Thank you.
Like many others here, I'm rooting hard that the Pomalyst, Kyprolis, dex triplet will drive your IgG and M-spike numbers down and push your quality of life up.
And I hope you count me as one of your virtual friends and admirers too. I hope your bubble keeps rising and glowing for a long, long time!
Mike
April, another beautiful article that spoke to me so personally. I am in a new stage of myeloma after 6 years, essentially expressing clinical symptoms in my blood. The term of N of 1 speaks to so many of us. I am your advocate for a quality of life within the treatment regimen. I am glad that your oncologist seems to take that element so seriously. The term "chronically ill" resonates with so many of us. Well, I am chronically ill, and I always am experimenting with what allows me to experience wellness. What a blessing these grandchildren must be.
Thank you so much for being so open with your journey. It encourages me to write more. Like Tom and Mike, I am one of your virtual friends. Keep fighting and writing about it.
Maureen
Thanks for writing and sharing your experiences, April! I hope that you are able to get the drugs that your oncologist recommends. We are all in fairly new territory with the 'novel agents' anyways, whether it be a real 'N of 1' or not. Good luck with your health too. The 'Bubble Master' sounds like a new experience for children and adults, and nice for summer events.
Great column, April, as always. Your columns are so touching and well written. I sincerely hope that the new regimen not only knocks back the myeloma, but just as importantly, improves your quality of life. After all, that is what it is all about, isn't it?
I recently decided to take a weekend trip to California for a bat mitzvah, (special 13th birthday Jewish celebration), for one of my younger second cousins. A couple of weeks prior to this, I had had the flu; I still had that lingering cough, however, I really wanted to go to California, (I live in NYC). This was just about two full days of travelling out of a total of three days, and I was going alone. I did not feel great, but I was happy to go and see lots of relatives I rarely get to see. I also wanted to see how I would fare on a trip like this, by myself. Well, there was a cold going around one of the groups that was there, and of course, I caught it, and ended up with asthmatic bronchitis, which was not fun and took another week to clear with the help of lots of meds, (including prednisone), which made me pretty crazy. But you know what? I would do it again! I got better, and the prednisone was actually good for the myeloma! I also took Biaxin, which has been a part of older myeloma protocols, so in the end, maybe I even did myself some good with respect to the myeloma!!!!
Who knows? I will always have the experience of my trip, as you will yours. And it means the world to me, as I know yours does too.
So, I say, keep on doing as much as you can, and take your beloved Warren with you as much as possible if that will make it easier for you to travel. I am sure he wants to be with you as frequently as his schedule permits. From what you have written he sounds devoted to you.
Please let us know how you do at Mayo.
Thanks again for your wonderful columns, April.
Ellen Harris, another "virtual" buddy.
Thank you April for your heart wrenching account of your current situation. It is so selfless of you to share these agonizing moments. I came to the conclusion this week that my husband is also "chronically ill." I guess I did not really want to admit it to myself. He has always been such a tough and active guy and watching him spend hours on the sofa this past week confirmed what I was afraid to admit - he is chronically ill. Right now his numbers reveal that he is actually in complete response. However, the regimen of Revlimid, elotuzumab (Empliciti) and dexamethasone is really kicking his butt and zapping his energy. Since he was the first guy in New Mexico to receive elotuzumab, I guess he is N of 1, too. Good luck with your visit to Mayo and your decision on the chemotherapy.
April -- Ah, stamina. Not there anymore & I have to take good days to do as much as I can. For nearly a year I was on Kyprolis, Pomalyst and dex until it wasn't doing much anymore, as my doctor put it. Now on Darzalex, one of 4 patients at his center. We will see what this can do for my numbers, and I will learn the rhythm of the side effects (loss of appetite for 2 days, fatigue for a day) -- today I feel great & worked out in the yard.
I hope I can continue with good results because my daughter invited me to a conference trip to Oslo in September! I want to see the fjords! Suzanne Gay
Having just returned from a partly wonderful and partly vexatious trip to Paris and London, I've decided that my myeloma journey of 4 years so far can no longer include long journeys with uncertain encounters with crowds, strikes, and hordes of cigarette smokers. I got very sick, and ultimately my husband caught my cold. We could not go to as many plays as planned in London because uncontrolled coughing in a theater is anti-social. So April, I identify with your sense of loss. At the same time, perhaps presumptuously I hope that there is some emotional reconciliation for you, as there has been for me. I'm telling my geographically dispersed loved ones that I want them to prioritize visiting me now. I want to be relaxed and to have as much energy as possible when I see them. Plane travel depletes too high a proportion of my sense of well-being. Chronic illness requires resourcefulness and self-preservation that just may open up more space for enjoyment. May the addition of another drug improve your numbers and your quality of life; may tweaking our desires to push ourselves lead to new paths of resilience! Thank you for your honest and realistic writing; it sustains others probably more than you know.
Bless you, April. I really hope the new regimen works for you. Like Thomas said, you are an explorer for the rest of us. Thinking of you in NC.
Thank you, April, for you direct and informational column. Yes, you are teaching us all how to live with myeloma on a long-term basis, and your circumstances have been changing in a negative way. I hope and pray your new regimen is helpful to you. Mary's comments above about visits on your home turf are probably good ones for the time that you are in treatment. You are a very strong person, and you have a bushel full of motivation behind you. Give it all you've got.
I also saw a presentation by a leading myeloma specialist in late March, and he gave an update on the new combos of drugs. He gave a story similar to Mark W above, with a success rate of 80 to 85%, which he said was very promising for high-risk patients like yourself.
I think you need a big bubble wand, and that you should get it out at least once a month when weather permits. Be the bubble as it rises and shines. I so want you to rise above all the chaos beneath you and see the clear skies above. I pray that will be your experience, and that you will have clear skies and rising health after traveling through your next treatment.
May God give you strength and patience. He has always provided it in great measure to me.
Marcia
This is a belated response to my readers: not because I was ignoring you, but because June has been marked by my being on the road. All told, I spent only one weekend in town, and that was consumed by my husband's Symphony matters, and counting the conference in Seattle, seeing my children in Portland (OR), and heading to Mayo towards the end of the month, I spent less than half of June at home. No wonder I am tired.
Tom Shell gets the "most creative response ever" award for his comments ranging from worrying about offending me (you did not, Tom) to the wonderful phrase "airy fairy." The latter is such a great term that I may have to incorporate it into my work with juveniles: "that sounds like a pretty airy fairy explanation to me, kid."
I appreciate everyone who chimed in with their treatment results and/or presentations on the new(er) combinations. My Mayo oncologist and I talked about the treatments out there, about the FDA and insurance approval, about what he can do differently when treating international patients, and so on. It was a lengthy and insightful appointment, The one thing I have to emphasize though is that at my post-diagnosis duration (closing in on 12 years), there is only speculation as to whether someone in my circumstances will get the same statistical odds that someone diagnosed 6 or 5 or fewer years will get. That's just the reality of having had this disease so long that I do not fit any of the test statistics. My Mayo oncologist, who I respect and really like, put it this way: "your body is not keeping up and your treatment options are narrowing."
That being said, I am not ceding ground until I have to. And before I sat down to type this response, I gardened for an hour. So there!
Thank you for all the comments and the encouragement and the good thoughts. I carry them with me as bundles of comfort. And thank you, thank you, Will Kane, for doing me the huge honor of pulling out my very favorite lines by E.B. White (I am a huge White fan) and thinking of me. My hand is over my heart in gratitude.
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