Letters From Cancerland: To Number Our Days
As I wrote in my last column, I was at the Mayo Clinic in February for both an oncology check and a cardiology consult.
The cardiology consult I passed with flying colors. I do not have pulmonary hypertension; I do not have amyloid damage to my heart. To borrow from poet Archibald MacLeish, I indeed have a heart and it is in solid shape.
The oncology picture is muddier. I have not relapsed, which is great news. But the Kyprolis (carfilzomib) regimen I am on is not knocking the myeloma down to a complete remission as the Mayo oncologist had hoped and predicted. He said I had reached a plateau.
Plateaus are problematic. (What isn’t problematic in Cancerland?) On the one hand, I’m stable. On the other hand, the myeloma is very likely trying to mutate to a Kyprolis-resistant clone that will send me into relapse.
My Mayo oncologist, who is Asian, was searching for the right phrase to describe my condition. He suddenly brightened. “Think of the 38th Parallel,” he said.
Great. I have Kim Jong-un in me.
There are different options for what to do next – each with potential risks and benefits.
One is to stay on the plateau and continue my current regimen of Kyprolis and dexamethasone (Decadron) without change. A second option is to add Pomalyst (pomalidomide), an oral therapy, on top of the current infusion of Kyprolis. A third one is to discontinue the Kyprolis and take Pomalyst instead. A fourth option is to switch to Darzalex (daratumumab).
The one most heartily endorsed by my Mayo oncologist is adding Pomalyst to my current treatment. He reminded me, however, that at 11+ years post-diagnosis, how my body would react was speculative. “There are very few of you with this longevity,” he said, not for the first time.
As my husband Warren and I drove away from Mayo, we debriefed the consult.
“What are you thinking?”
“No, what are you thinking?”
Warren was thinking of things he still wants to do together.
Yeah, me too.
We talked about adding Pomalyst, the option I had reluctantly leaned towards. I wasn’t happy about it at all, but none of the options sounded good.
There was a whole lot of quiet in the car.
My local oncologist Tim, who I saw four days later, was voluble and adamant in his opinion of the "add Pomalyst" option. If I wanted to tank my quality of life, let’s add a powerful drug on top of an already powerful drug. For perhaps the first time ever in our long relationship, he passionately advocated quality of life over quantity of life.
Which did I want to count? Days or experiences?
I came out of that appointment with my head reeling. “Dueling oncologists,” Warren said. “Wasn’t that a scene in ‘Deliverance?” a friend texted when I told him the response.
Cute. But I was in knots. Do I follow the Mayo opinion? Do I follow Tim, who has been on the myeloma path with me since I started?
It wasn’t until later that same day, after infusion and while walking to the monthly legal clinic at which I volunteer, that my thoughts started to smooth out (walking does that for me). I could finally start thinking through the issues facing me. Quality versus quantity. Plateau versus complete remission. Risks of current treatment versus risks of new treatment.
Late Beacon columnist Pat Killingsworth, in his final comment – which I read after my local oncologist made his comments – underscored what I was thinking when he wrote, “Honestly, we may have pushed things too far … Apparently my body can’t take it.”
In the days since, I have started Round 7 of my present regimen (Kyprolis plus dex) without any changes. Even my Mayo oncologist recommended delaying adding Pomalyst at this time. This is the busiest time of my work year, and he was concerned that I would not be able to work right away.
Yes, you read that right. "He was concerned that I would not be able to work right away." Houston, we have a problem.
I have talked at length about my quandary – with Warren, with my youngest brother, and with close friends, some of whom live in Cancerland themselves. None of them has told me what to do or what they want me to do. All have expressed great concern. Yes, I might gain more time, but it might be time of such poor quality that it in and of itself poses new threats to me. Once I choose that path, I will never recover any lost ground of overall health and well-being.
Let’s face it. Time is seductive. Those of us with terminal illnesses get lured by its siren song. We forget, however, while Time is crooning away, that time is an illusion. It is not as if I am being handed a cure, only a potential extension without any way to project or gauge what it will do to me.
Going back to the questions that Atul Gawande posed in Being Mortal: What are my goals, and what I am willing to do or not do to try to attain them?
I turn 60 in a few more weeks, a milestone I never anticipated reaching when I was first diagnosed over 11 years ago. Pat’s family ended life support on his 60th birthday; the symmetry of our ages gives me cause to pause and reflect.
I think I know now what I am not willing to do. I stay the course and roll the dice. I may be numbering my days, but they are mine to spend as I want and that is enough for now.
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 .
It is tough to make a well balanced decision, because nobody knows what is in the pipeline. How long you will be stable without, or how bad you will feel with, treatment. It is a challenge, April, and only you can make that decision. I stopped treatment 1 month ago and am still hoping for more quality of life. After 3.5 years of constant treatment, with 1 transplant, my body was telling me that it was enough. I am 58 years old and hope for a couple more years of reasonable health without chemo. In my opinion, there is a price to pay for prolonging one's life, and as you stated, it is up to a person if she or he is willing to pay for something that is not even guaranteed.
I hope you get the chance to make more beautiful memories, April, with less toxicity to process.
Instead of adding Pomalyst, have they considered replacing the Kyprolis with Pomalyst? I know the multi-drug combos seem to be most effective early on, but might it be worth trying just a Pomalyst / dex combo for a few rounds? FYI, I was diagnosed 2.5 years ago. After my transplant nearly 2 years ago, I enjoyed remission for a little over a year before the maintenance Revlimid / dex quit working. The maintenance Velcade / dex hasn't worked well, either, so I start Kyprolis next week, continuing the dex. Hoping it will be more effective. If not, Pomalyst and then some -mab are next on the list. I don't think my doc is ready to do big combos until we have tried a couple of more standard options on their own to gauge how my body responds.
April - You seem to think Pomalyst will interfere with your quality of life. It is a gentle Imid, really – for me at least. Kyprolis-dex did little for me last summer and by October I added Pomalyst. No side effects at all and quality of life great. However, by the end of February, the IgA went up to around 1800 (a 2-month rise from 1300) and I am now facing taking Darzalex. Since diagnosis in October 2008, I have been on many regimens, including a stem cell transplant. Oddly, I've never felt sick or bad from multiple myeloma. I feel your sense of time running out and options now limiting more than ever. It's scary and I don't take any day for granted. Suzanne Gay
Very well stated. I also parallel with you and Pat, turn 60 this year, but I was diagnosed more around when Pat was in 2007, so you have a couple of years on me in this journey. You go thru the pros and cons of the options well.
We are always looking for balance – enough, but not too much, treatment.
Thanks for sharing,
Jan
April:
Congrats on hitting 60. I bet at year 5 of your journey, you wondered when / if that day would come, and how you would be. Now, you know. Celebrate that. Nice work, for the past 11 years.
Obviously, you can go in several directions ... and also later change that at will. If Revlimid does not impair your quality of life, perhaps add that to your current for a few months? Perhaps that will shore up the leaking 38th Parallel. Kim Il Jong is a paper tiger.
You are bright, fabulously so, and will figure it out. There is no bad choice. Just do what you wish to do.
Dyscrasias do suck. But they haven't met your concentrated efforts.
Looking forward to reading your columns at 65, kiddo.
Regards,
FYI, after 19 months of Velcade subcutaneous, my myeloma progressed. I switched to Pomalyst and dex 7 months ago, which reduced my M-spike significantly. However, my quality of life fell to an equal and unacceptable extent, with fatigue and weakness being the debilitating side effects. It became intolerable. Recently, we down-dosed from 4 mg to 3 mg. Thus far, the side effects are tolerable. And, I still have the option of reducing the Pomalyst to 2 mg. No labs as yet to determine effectiveness at the lower dose, but I should soon have some comparative numbers.
Good luck with your decision!
That's a hard one, but much easier for me. I am in my mid 40s with three children, aged 8-5, so time will always be the priority for me. Myeloma has taken a lot from me, things I thought I would never get back, but some of it I have. But one thing it never took was the honour and duty to be the best father I could be, and so long as I can be there for my kids, I will put up with pretty much anything to still be there for them as they grow up.
Such a wonderful, thought-provoking article. Thank you, April.
Aloha April,
Your willingness to share this tough decision with us is awesome April. You are doing more good than you will ever realize for all of us who are currently facing, or will someday face, a similar choice. Thank you for sharing.
As you pointed out, myeloma is a constant series of decisions. I like to think my decision will be easy for me. It seems like a long ways away now, but I know it's coming and there is no way to say when. As it gets closer, I'm sure it won't be as easy.
For now at least I am all about Carpe Diem! I hope I have the courage to keep it up.
Godspeed to you in this decision.
Aloha
Tom
Hi April,
Great column! We parallel circumstances in several areas, but you are ahead of me in a few ways. I was diagnosed @ 50 in December 2009, did the stem cell transplant July 2010 and had remission for a bit less than 3 years with Revlimid maintenance for the first 18 months. My question for you is that you say you have not "relapsed". What then is your status? I am relapsed and am on the same treatment as you – Kyprolis and dex. Yikes, even after all these years with multiple myeloma, I still get confused with all the terms!
You write my thoughts re time: quality vs quantity. At this time for me, I have gained time, but my quality of life is so diminished by fatigue, GI issues, etc, that I haven't been to my office in months and am now considering early retirement
Not to mention all the hobbies, etc., I can't do anymore. Ultimately, regarding treatments, I generally always go for "less is more," as I'm a side effect scaredy cat. So for me now, Kyprolis and dex. Then change when the time comes, not add.
Anyway, thanks for a great column and I didn't know Pat believed he pushed his treatments too far. I will re read his comments on his last column
Such a huge loss.
Best of luck to you, and, again, great column April!
Dear April,
Thank you for the generous sharing of of your personal process, intellect, and emotions in living with multiple myeloma.
I was diagnosed a year ago, at age 59, and have been through Revlimid, Velcade, and dexamethasone (RVD) treatment, stem cell transplant, and now we are trying to knock it down a little further with another few cycles of RVD.
I go back and forth between the blissful state of denial and rigorous reading and research. In denial, I intentionally ignore and push through the side effects. It really helps my state of mind, because who knows, anyway. I could just be tired from working too hard. The stomach cramps could just be a touch of flu.
When I embrace my situation, I read thoughtful articles like yours and take courage in what I may have to face. The Beacon is my touchstone for when I have the grace to accept my multiple myeloma. I am grateful to be part of this community.
Rebecca
April,
Such wise words for us all.
If you're stable, then just keep going. When it changes, you'll know to either add something or switch to a different drug. I was on Pomalyst for 6 months last year my numbers (kappa, lambda, and M-protein) were too high for comfort for me, even though they didn't change much. So stable in a sense – my kappa was @ 1000 – so I started Velcade in December and, wow, in one round my kappa went from 1000 (whatever comes after) to 45, then in the normal range. So I'm really pleased.
Keep being strong as you are. Many new drugs are out there.
April,
Facing treatment changes / decisions is tough. No one knows what the effect or outcome will be. Four and a half years ago, my husband relapsed and his oncologist didn't give him any options - he wanted him on a clinical trial of Revlimid / dex / elotuzumab. Period. Elotuzumab was recently approved by the FDA. He did well on that for several years, then did something stupid (didn't wear a mask) and ended up with a MAC infection. He nearly died before it was diagnosed. The infectious disease doctor said he had to go off all treatment or die from the infection.
So he stopped treatment. He was allowed to stay on the antibody though. That is the ONLY thing he has been on for over a year and a half. I waited with trepidation for the relapse to occur. About 2 months ago, a strange thing happened. He is now in complete remission for the first time ever (8 1/2 years). Don't discount the antibody! Of course, we are also wondering if being on 3 and sometimes 4 strong antibiotics for a year and a half might have helped.
Good luck with your decision! I hope whatever you choose works well for you with little or no side effects.
Just curious ... What type of stem cell transplant did you have? And how many?
Great article. I too have rolled the dice; no transplant nor maintenance therapy. Just went over two years in remission.
Your situation highlights the problem / opportunity of the multiple myeloma patient today. We have to become semi-experts on the treatment, especially when we get differing viewpoints from our doctors. So much of the treatment is still trial and error – what works, how much can the body take, pick which quality of life button that you prefer. Often we have to be family moderators to make our personal decision and also build consensus with family members. We are always weighing what we are able to do. Can I push myself to go on this trip or attend this family function? Is my inactivity totally a result of my fatigue, or is my inactivity actually adding to my level of fatigue? Plus, everyone we know has an opinion about what we should be doing to make ourselves better.
I'm thankful for forums like this one that help us sort out the jumble.
Hi April,
Thanks for your thoughts on the decisions you, and many more, find themselves having to make with multiple myeloma. It isn't easy and even more confusing with all the new choices in drugs, available trials, and treatment options. I guess this is a "pleasant problem" to have – choices are nice – but still a problem to figure out what treatment option makes sense for you.
What stands out from reading your's and other's writings is that each of us reacts differently to treatment. For those readers who are just starting this multiple myeloma journey, it is somewhat misleading to assume you know in advance what your journey will be like based on others. My family doctor gave me 2-3 years. My local oncologist tried to steer me away from an aggressive treatment protocol, a quality of life issue he said. A multiple myeloma specialist at a top hospital who was an acquaintance felt that I should get "my house in order" and then make myself as comfortable as possible until ... you see, I had a version of high-risk multiple myeloma and it was just a matter of time.
This was all in 2008. I chose an aggressive treatment followed by 3 years of Revlimid, Velcade, and dexamethasone (RVD). Were there side effects? Yes, but none even close to the side effect of dying. I'd do it again in a heartbeat. I was fortunate, but I didn't know that going in. You can almost always scale back a treatment if the side effects are too much, but you won't know until you try. All the doctor can tell you is what he or she has observed with others. But maybe you won't fall into that group. Again, for those just starting this journey, consider keep an open mind in selecting you treatment options.
April, I wish you the best of luck and thanks again for sharing your thoughts.
Steve
Wow, I have learned so much today reading your article and the comments left by the wonderful members of this community. My level of hope has risen a mile.
I am also 60 this year. You are a little further down the road than me, as I was diagnosed in 2010. My numbers are going up a bit, but I suddenly have a great deal of discomfort in my large bones. Yes, I have an appointment.
This is about you, though. Fabulous advice from other members. The one I like best is that you can always change your mind if you choose not to change your treatment now. That's a good point. Take time now to do some of the things you just thought about before, maybe use up all of 2016. I will be 61 this year, so I have investigated retirement. Maybe you should too. Keep visiting the doctors and revisit your markers and the options. Love the comments about the antibodies!
I attended a presentation in Indianapolis last week by Dr. Anderson from Dana Farber. He suggested an option of using a new oral proteasome inhibitor and the new histone deacetylase inhibitor, panobinostat (Farydak). They have 80 percent success rate with this in relapse setting. Bring this one up with your doctors too.
Love you. We are so much better off than patients 10 years ago. But you're still right about using our time wisely and not banking on quantity being there in later days.
I thank you all for your thoughtful responses and for April's honest article. As patients, we always have to seek a balance between acceptable side effects, more time on this earth, and many gradations in between. I have just made a decision to try daratumumab; I thank my insurance company for making such decisions possible for me. Will it work? I surely hope so. My previous regimen kept my myeloma from getting worse, but it didn't get very much better. I had MANY side effects, in fact, that regimen was the toughest since the stem cell transplant six years ago. I am just grateful to be an eight-year-survivor and can make choices.
These comments are great: thoughtful, insightful, and encouraging.
For those talking about pomalidomide (Pomalyst), that may well be the next course of treatment when the carfilzomib (Kyprolis) ends. I just am unwilling to add it to the mix now. I think rneb mentioned Revlimid – nope, that is a failed course of treatment for me. I went off that last May.
Judy asked about my stem cell transplants. I had tandem transplants, within 90 days of each other, in June and August 2005. These were autologous transplants; the stem cells were harvested from me the month prior to the first, I was part of a study (from SWOG – Southwest Oncology Group) to determine whether tandem transplants gave better results than single transplants. If I remember, the study concluded there was no clear advantage enough to offset the risks of a tandem. Personally, the stem cell transplants were a walk in the park and I sailed through them with no complications. On the down side, I relapsed within 90 days of the second transplant.
Many of you talk about where you are on your myeloma course: recently diagnosed, had myeloma for a few years, etc. Take each day as it comes. I'm going to echo what several others have said: it is always a changing landscape – what treatment to take, how is my body responding, how old are my children? – and it is always an intensely personal decision. What is right for another patient with myeloma may be wrong wrong wrong for you. And as several of you noted, treatment is not a choose-this-and-forsake-all-others decision. At the next path in the road, who knows which path I will take? I just know which one I am not taking now.
My birthday is 2+ weeks away. The biggest decision I hope to make is chocolate or vanilla cake?
Dear April,
You are helping me to understand more and more about multiple myeloma and its complexity. I try not to be afraid about the future, but there are sure moments when I wonder how long my remission will last. For me, your last sentence reflects your own determination and strong assurance in living life hopefully. I will remember that sentence. I also am grateful for the responses to your column.
Thank you, April
Wow, April what a courageous and thoughtful article. Plus all the comments added so much to the discussion for me.
I too am 5 years into my treatment journey, and I am 71 now. I like other patients make each treatment decision looking at quality versus quantity of life. I am glad that you emphasized how this has to be a personal one for each individual and family. To complicate the issue is how each myeloma patient and disease is so different. I really liked how you stated that this is just your decision now.
I negotiate for drug holidays with often great resistance from one of my oncologists. My next holiday is one month, and we will travel to the coast of California. I usually come back ready to engage in treatment again with a glad heart.
Thank you for writing, April. Enjoy your birthday, whether it's chocolate or vanilla cake.
Maureen
Happy Birthday in April! The age of 60 is auspicious in India, it is a sacred day. Have a good year next year too. I hope that you can find the right balance of meds to control the myeloma, of course. I haven't yet tried Pomalyst or Kyprolis. It seems we are charting new waters with myeloma as patients, but at least there are new treatments to try (Kyprolis is not yet available in Canada, apart from clinical trials or special access (?), but it will be soon I hope.)
April,
When the excitement of all the newly approved drugs settles down, those of us dealing with a disease for which there is still no cure remain challenged by the quality/quantity of life issue with which you are wrestling. My father developed leukemia at 75 and it ended his life at 77. He lived to full life expectancy for a male born in 1914 and knew how fortunate that was. He'd had a good, long life. I recall one conversation during which he told me he often thought it would be nice to have another day, another week, another month, another year. These days I know exactly what he means and in your article you expressed it so well. Thank you for sharing your thoughts.
What is this "antibody" treatment you wrote about when your husband had forgotten to wear a mask and got so ill?
Wow, April. Tough decision. You are such a pioneer and many of us are keenly interested in your decision. My husband started elotuzumab (with Revlimid and dexamethasone) in January, and he has had minimal side effects. Do you think one of the new monoclonal antibodies like the one you mentioned, daratumumab, would help you?
April - Thanks, enjoyed your story.
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