Letters From Cancerland: The Four Questions Revisited
Back in November, 2014, I wrote a column about the book Being Mortal by Atul Gawande. It is a book that many of you have read; it has also been discussed in other columns by other Beacon columnists. I still encourage lots of people (well, everyone, pretty much) to read it.
Right now, this book and my response to it are very much on my mind.
I just finished my first eight weeks of treatment with Darzalex (daratumumab). I will soon visit my myeloma specialist for a quarterly checkup, and my local oncologist (the ever-present Tim) and I are still debating whether to have the ninth Darzalex infusion before the visit with my specialist, or when I come back and see him the week after.
Other than the first, shall we say "eventful," Darzalex infusion session, every other infusion has gone smoothly and without incident. Once the Benadryl (diphenhydramine), one of two pre-medications, hits me, I doze through much of the session. My body has gotten used to the rhythms of the days after infusion; my lowest day of the week is two days afterwards.
I have noticed, almost out of the gate, that I have felt better (better!) since starting Darzalex than I have felt in over five years. It is so odd to feel not just “okay,” but downright “good,” that it took me a few weeks to get used to the sensation. My husband Warren has noticed, and everyone from friends to colleagues at work has corroborated, that I am more alert, less rundown, more energetic, and just more like “the old April” (that would be the post 2004 / pre-2012 April, just to specify a model number).
When I last saw Tim and said “I have felt better the last five weeks than the last five years,” his face all but split from grinning. Afterwards, I told Warren, “Tim has been waiting five years to hear me say that.” Then I thought about my statement and reworded it: “I have been waiting five years to say that to Tim.”
So what better time to revisit Being Mortal than when I am on an upswing?
The core for me of Being Mortal is the four questions that Gawande feels any doctor working with end-of-life issues should ask the patient. Those questions are:
- What is your understanding of what is happening to you (medically, physically)?
- What are your biggest fears and concerns about what is happening?
- What goals are most important to you?
- What trade-offs are you willing to make or not willing to make?
Those questions are never far from my mind with every change in treatment. With the visit with my specialist looming, I want to review yet again where I stand on my answers.
When I first wrote about the questions, almost three years ago, I wrote that Tim was uncomfortable when I have raised the topic of dying. He clearly didn’t want to have that conversation, focusing instead on treatments I hadn’t tried yet.
My, how times change.
Tim and I have discussed, not with urgency and not in great depth yet, my position on quality of life versus quantity of life. As he pointed out to me, oncologists are trained to keep their patients alive for as long as possible. “But,” he added, “you don’t worship at that shrine.” Increasingly, including when I began this latest regimen, he and I discuss quality of life first.
I may have to speak over my specialist when he and I discuss my progression and my disease.
When I visited with the specialist in May for me to be restaged, he made the comment, twice, that he “needed to keep [me] alive for two years.” It was such an odd statement that I had to ask: What was magical about two years?
It turns out that two years is his estimation of when CAR T-cell therapy, a new form of immunotherapy, will be approved as a treatment for multiple myeloma. In this country, the Food and Drug Administration just approved a CAR T-cell therapy for a form of leukemia. Trials are ongoing for the therapy's use as a multiple myeloma treatment.
What the specialist did not ask was whether I am interested in or willing to try CAR T-cell therapy, should it become approved. For now, my answer is no. To me, the risks of the new immunotherapy seem very high, and the likelihood of it working low. I made a comment that it was not appealing to think about a drug that works for only half of the people taking it, and he was swift to say, “Oh, we would be thrilled if the results were that good.”
See why I am revisiting my four questions in light of my upcoming trip?
In the end, what does or does not happen with my treatment will rest with me, with input from Warren and from Tim. What I know now is that I feel good. I feel better than good. Since writing my last column, I have baked 24 loaves of zucchini bread and two (two – count 'em – two!) lemon tarts. While I am writing this, dough for homemade bagels is rising.
Life is good.
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 .
I can’t tell you how happy I am to read this. I was beginning to “worry” about you. How wonderful that Darzalex is working!!! I’m so sick of feeling crummy with the other drugs. I’m beginning to think I’d like to try it too, the only thing that scares me is that first dose that everybody seems to get so sick with.
Keep feeling good! Julia
Great column. Glad you're feeling better!
David
Wow, so very glad that you are feeling so much better!! Thanking God for researchers and their discoveries that have kept us alive for years rather than months. Keep on keepin' on!!
Great column! I'm thankful for your progress! Keep the faith all!
I'm so happy for your reprieve! I pray it's you answer for many, many years to come.
Your four questions are very pragmatic and we'll done.
I refused a trial of Darzalex. My doctor offered it and I had so many procedures prior to the offer, I just couldn't do more treatment. As well as the smoldering myeloma I ended up with large B cell lymphoma. Remission after 6 months of treatment and now I am still smoldering multiple myeloma with a change in plasma cell of 10% up to 30%. Started with MGUS in 2005 and then smoldering myeloma in 2008, large B cell lymphoma 2013, and I'm due for PET scan in 1 week.
Be Blessed,
Katy
I am so very happy to read that you are feeling good! I always appreciate your columns. Wishing you a great next visit with your myeloma specialist. I would wager that everyone around you is looking forward to many more years of your company AND the opportunity to enjoy your zucchini bread and other goodies. Take care!
A word to Julia Munson:
My husband (67) takes Darzalex and has never had an actual reaction of any magnitude, even the first time. They did take eight hours to give it to him the first time, but have cut it to four. He just had round 11 today. His M-spike is holding steady at 0.685 g/dL (6.86 g/l), but it used to be 2.8. He had 80% plasma cells last December when he had a bone marrow biopsy. We don't know whether that has changed or not.
I just wanted to tell you about someone who hadn't reacted badly. The drug he reacts badly to is dexamethasone, so his oncologist tries to give him as little as possible.
April,
I am so happy and thankful that you are feeling better and I hope seeing some improvements in your health. I know you have said you "measure" how bad your myeloma is by how you feel, not by the lab results.
Like others, I look regularly for your new columns. You were brave to start another treatment.
Thank you again for your beautiful columns, and blessings to you, Warren, and Tim!
Deb
I had the same reaction to Darzalex as part of a clinical trial. I feel good! It`s been six four-week cycles for me, so far.
April,
I am so glad you are feeling better. I trust that the results from your visit with your specialist will confirm why you are feeling good, and I hope that the response to Darzalex lasts a long time for you. I am not very familiar with the CAR T-cell trials in multiple myeloma, but with new therapies there is always a trade off with side effects.
April ~
I am at the same stage. Just completed 8 treatments of Darzalex, Pomalyst, and dex after 15 months of prior treatment (Velcade, Revlimid, and dex) that worked, but eventually my numbers 'plateaued'. I was switched to the new treatment in July and have had improvement. I, too, had an initial reaction (at hospital) to the first infusion, but no issues since.
I am in line for a stem cell transplant, likely before the end of this year. I completed the harvest in April.
This is where it gets scary to me. I've spoken with two other multiple myeloma patients who have gone through it. Both are doing well. But they both had it done while they're in their 40's and I'm in my 60's (but in good health aside from multiple myeloma).
I was told by ay myeloma specialist (second opinion) that CAR-T therapy has very serious side effects and it was not recommended as a possible choice (for me).
Great column April. That's encouraging to hear how well you are feeling.
Greetings April, and thanks for your wonderful column! That is a good review of 'Being Mortal', with the questions being asked there also. It just sounds like the Darzalex is really working well though! Do you think that you are feeling better because the 'tumor burden' is being reduced? I had that sensation back when newly diagnosed after the Velcade reduced the cancer. Best of luck with everything, you would be way ahead with holiday baking!
It is always heartening to read comments and see how we all thread words of comfort and encouragement along with medical observations for one another. I wrote a column many months ago where I mentioned how the Myeloma Beacon community serves as my own personal "pyschosocial support service," and that still holds true. I love that.
I will write about where things stand for me in my next column. No spoilers here!
So good to hear you are doing well. It always amazes me what we go thru to 'feel good'. May it continue to only get better.
April, I am so glad to hear your grand news of a positive response to the Darzalex treatment. I respect how you still revisit " Being Mortal" at this time of strength. Perfect time to reflect. I am at a different place right now, just revisiting "relapse" world since September 1 and with a different picture of the disease. As soon I get some breathing space, I will write about this new phase. Until then, I'm always uplifted by your column.
April, I am so glad that you're feeling better than you have in years! "Feeling good" is a luxury that so many of us take for granted. I can understand your position on quality vs. quantity of life, and I dare say that, as difficult as the conversations must be between you, Warren, and Tim, those four questions from Being Mortal are excellent touchstones to guide the discussion. Wishing you many, many, MANY more good days to come and a great visit with your oncologist! Take care!
Tabitha
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