A Northwest Lens On Myeloma: Anniversary And Decision Point
July 22 marked the third anniversary of my autologous (own) stem cell transplant. Honestly, although the treatment went well, when I was sent home, three-years in the future seemed like a very long time away. I wouldn't have been surprised if a relapse had arrived before this day.
Today, however, I'm still enjoying a complete response and relatively good health with remarkably few side effects. My perspective on the future also is much brighter, and three more years of good health doesn't seem like a stretch anymore.
Much of my current success is due, I believe, to the aggressive maintenance treatment I have been receiving. This third anniversary is not only cause for celebration of 36 months of progression-free survival, but it also raises a decision about how to proceed.
A quick review of my history lays the groundwork for the decision I face this fall. I was diagnosed in 2015 with "high-risk" multiple myeloma due to the presence of the del(17p) chromosomal abnormality. I was initially treated with Velcade (bortezomib), Revlimid (lenalidomide), and dexamethasone, which proved ineffective. I moved on to Kyprolis (carfilzomib), Pomalyst (pomalidomide), and dex (KPD), followed by an autologous stem cell transplant. At 60 days post-transplant, I had achieved a nearly complete response and had to decide whether and what maintenance therapy to undergo.
If I've learned one thing about multiple myeloma, it's that it can be uniquely personal in the way it develops and affects a patient, but more so, how it will react to treatments. Maintenance therapy, it seems to me, can be even more of a gamble then initial treatments. If a patient responds well to initial treatment and a transplant, is there a reason to continue treatment to maintain that progress? This can be a tricky question, especially for standard-risk patients who did well after initial treatment. In a nutshell, all treatments come with risks. To undergo maintenance therapy, a patient must decide that the chance of achieving extended progression-free and possibly overall survival outweighs those risks.
There is data suggesting that maintenance therapy for "high-risk" patients like me can extend time without relapse, so following my transplant, my doctors recommended an aggressive maintenance therapy of a half-dose of the previous KPD treatment. This decision was based on research out of Baylor University that supported a triplet of medications for three years for high-risk patients.
During the first ten months after my transplant, my lab results showed a barely measurable amount of M-protein. After that, over two years now, there has been no measurable amount of cancer detected in my blood tests. By all standards, this is a great result and consistent with the best outcomes reported in the Baylor study. While there is no way to know if my current condition is because of the maintenance treatment, given all that has occurred in the last three years, I believe the decision to proceed with the aggressive maintenance therapy was correct.
Now that I'm approaching that three-year mark, I must decide what's next. It's easy to think that if the disease is being kept at bay and I'm not suffering many side effects, I shouldn't change anything. Though my current results are all we could have hoped for, as I understand the research, there is little information about what benefits, if any, I might achieve by continuing this treatment beyond three years. There is, however, an ever-growing risk that the toxicity of the treatments will eventually be more than my body can handle, and that may open the door for more serious side effects or secondary cancers.
Since there is a lack of clear data about the clinical benefits of continuing this aggressive course of maintenance, I will decide based primarily on how the treatments impact my quality of life.
I'm convinced that Kyprolis is a myeloma-killing champion for me. Other than my transplant, it also has had the most significant impact on my quality of life. Kyprolis is administered by infusion. As an initial treatment, it required trips to the clinic on two consecutive days three weeks on, one week off. As maintenance treatment, the trips are cut to one day a week, but still three on, one off. For me, that means a two-hour roundtrip drive and anywhere from two to five hours at the clinic. Since starting Kyprolis in January 2016, that has been a lot of time on the road and in the clinic. Since my appointments are generally Friday or Saturday, it also means I can't plan to travel or participate in an activity on many weekends because I have treatment.
My wife and I cope with this schedule because we understand it is necessary and because my getting better has become one of our jobs. We are used to the inconvenience in our schedules and our lives, but it would mean everything to retake this time from the disease.
Time, I have discovered, is more precious to me than anything else. Time with my family. Time with my grandchildren. Time to take pictures and enjoy the world I live in. Time to work on the projects that are priorities to me at work. Time is finite with our without myeloma, and making use of the time doing what I want to do, instead of sitting in traffic or in a clinic bed, is the ultimate improvement to my quality of life.
Based on the ever-increasing risk of toxicity, the lack of compelling evidence I would improve my chances of long-term survival, and the thought of even a short-term return to a more normal life, I have decided to drop the Kyprolis from my on-going treatment plan. On my doctor's advice, I will continue the oral medications of Pomalyst and the dreaded dexamethasone. We will closely monitor my health and meet regularly with my specialist, ready to change course at the first sign of a relapse.
When I was first diagnosed, I looked at treatment as a way to avoid dying. On this anniversary, I celebrate the past success and look at maintenance therapy as a way to keep living my life.
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Mark's Photo For The Month
I celebrated my anniversary this year, as in the past, vacationing at our eastern Washington lake retreat. As always, it was splendid. When we're at the lake, I spend early mornings on my boat looking for scenery and wildlife to photograph. This year a bald eagle let me get unusually close, and it stayed and posed for many great photos.
Click on image to view a larger version of it.
Photo copyright © 2019 Mark Pouley.
Mark Pouley is a multiple myeloma patient and columnist here at The Myeloma Beacon. His column is published once a month. You can view a list of his columns here.
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Mark:
Wow, your treatment has been so very successful and you have been so faithful to the routine, a routine that is very aggressive. My wife was diagnosed April 14, 2014. She is also 17p. She had Velcade, Revlimid, and dexamethasone (VRD) as induction therapy, and the autologous transplant.
After transplant, she was just on low dose Revlimid and after one year that stopped working. She progressed through 11 different regimens, before entering a CAR T-cell trial in April 2018. Her multiple myeloma was out of control and had spread to her liver.
They collected her T cells on April 18th, and than she was put on a quad therapy of Kyprolis, Empliciti (elotuzumab), Revlimid, and dexamethasone to try and bring her multiple myeloma under control while they grew the T-cells. Her body finally couldn't take anymore treatment, and she got sick with respiratory illness and was hospitalized five days so she could gain back some strength, but her multiple myeloma was too advanced for her to get her T-cells back. They decided to try and give her a pretty harsh regimen called VRD-PACE as a rescue therapy to hopefully bring her myeloma under better control.
She was hospitalized again and, wow, that was a harsh regimen for her. For a couple of days she had no idea what was going on around her. I began to think that our only option might be hospice. But she rebounded and the staff at the hospital worked with her everyday to bring her back to health. She typically got 3-4 transfusions / infusions everyday of needed fluids, blood, magnesium and the like.
Well, she got her T-cells reinfused on July 9th and had just grade 2 cytokine release syndrome (CRS), so not too bad. But the great thing was that her 15-day test results showed zero evidence of myeloma in her body!
Of course, this is a long story, and I am making it sound simple, but we just passed the one-year mark and she has taken zero maintenance therapy and there is still no detectable sign of multiple myeloma. The only marker that has hung around since 15 days is the M-spike of 0.1, but at the one-year mark is not measurable.
Anyway, we are beside ourselves with gratitude. There are many promising treatments in the works. Our best.
Aloha Mark,
Congratulations brother! I am right there with you.
I am always debating my quality of life vs. treatments. I am 68 days out from a stem cell transplant but have had active disease since 2013. I am to start my maintenance therapy soon and I am dreading it, as I too will probably go back to Kyprolis and its massive time suck.
I am completely asymptomatic (like you I believe), which makes getting these treatments even more hard to swallow. I will continue, like you, to listen to my doctor, as I have seen my M-spike rise pretty quickly when I stopped my previous maintenance therapy.
Unfortunately, life is finite, and for us maybe even a little more so. I hope you can continue your resolve to enjoy every moment of it. I too try to make that my priority.
Thanks for the good articles. There are lots of us in the same boat. Hearing about your struggle is helpful to me and to others.
Aloha & Carpe Diem!
Tom
Thanks for sharing the details of your experience. Congrats on your excellent response.
Hi Mark.
Nice article, sorry for all the time impacts of your treatment pathways. Good luck with your treatments and life journey. I am coming out of remission 5 years after a stem cell transplant and have begun a clinical trial for Empliciti (elotuzumab), Revlimid, and dex. My relapse has just started and is "biochemical," but we want to get ahead of things. The first 2 months I will have have to drive 50 miles for weekly infusions of the Empliciti and thereafter, assuming this works, will only travel monthly. Like most folks with myeloma, the dex side effects are really difficult (I am writing this note at 6 a.m. after my first infusion yesterday, and had a hard time sleeping very long). Fortunately my treatment team says dex can be considered for dosage reducion pretty quickly if things go well with the initial infusions.
Maybe this could be considered for your case. Too bad there is not yet an oral version of Kyprolis. I wonder it that is ever possible?
Congratulations on the three-year anniversary and your good results so far! I am glad your treatment has worked out so well. I hope that the new regimen of Pomalyst plus dex holds the myeloma at bay also. I didn't really like taking dex either, but found that the prescription drug trazodone helped me to get some sleep. I am afraid of getting 'sleep deprivation' since that can be a serious medical condition!
Love the photo of the bald eagle. We have them here occasionally in the river valley, and I have seen lots of them on Vancouver Island, especially near Campbell River. Last winter, there was a photo in the news of people feeding them by an estuary in Comox, and they appeared to be quite tame. That was really unusual!
Congratulation on your 3-year anniversary. Every day is important. I have been myeloma free for 7 years since my transplant. I am grateful for each day and hope it continues for a long time. I was told that I had a del(17p) chromosomal abnormality also, but none of my more recent tests have shown that, now it is just a del(13q). I know some day my luck will change, but I am trying to enjoy life until then.
I love your photographs. The bald eagle is fantastic. So glad it posed for you. I wish you many more years of remission.
Thank you to everyone for all the nice comments on my column.
Daryl: What a harrowing journey your wife has been on, but it is so encouraging to hear she has turned a corner for the good. May she continue to move to good health.
Tom: It’s all a balance. As I wrote this column, I hadn’t specifically thought about the fact that I’ve basically been asymptomatic the entire time and how that measures into my thinking. It is always tough to voluntarily take medications I know will impact my quality of life, but it is what we have to do I guess.
Michael: Good luck with the new treatments.
Thanks to everyone also for the compliments on the photo. I love having any chance to share my work. I’m especially drawn to bald eagles and I’m fortunate to have many opportunities to see them here in the Pacific Northwest. It wasn’t like that just a decade ago when their numbers were so low.
Mark,
Best to you with your treatments. Yes, there is a lot to think about when we patients think about our quality of life, effectivness of drugs, etc.!
That eagle is so strong looking and a great symbol of resoluteness and determination. Thanks, as always, for your insightful column. It helps me as I think about my own situation and new drug change coming up at some point, possibly soon.
Take care,
Sylvia
Mark, I'm so glad you have had such great success! I wish you well with your new maintenance regimen. I, too, have thought of dropping the Revlimid maintenance, but I'm tolerating it. and it is probably keeping the myeloma in check, as I have not had a transplant. I figure if I can maintain a somewhat "normal" lifestyle with my limitations, I am doing well.
I wish you well and always enjoy reading your articles and especially seeing your beautiful photography!
Thanks Mark for another great and relevant article. I am just behind you, a year and a half post autologous stem cell transplant and on maintenance treatment (just Velcade shots twice a month for me). My quality of life is great, but I worry about continuing maintenance for a long period as well. Thank you for sharing your decision process, I will be there next year.
Mark, thank you very much for this story. Very encouraging. John, my significant other, has p53 17d and is doing fine after Kyprolis, Revlimid, and dexamethasone (KRD) induction therapy and an autologous stem cell transplant with four-drug conditioning. Two months after the stem cell transplant, his life turned around, and he experienced a ‘normal life’ again. The maintenance therapy continued with KRD at a lower dose of Revlimid and dexamethasone, and so far all signs are stable. He started working, went on vacation to Maui, and even is playing golf again. Energy level is so much improved. But there is no doubt that CAR T-cell therapy will be needed at a certain point.
Daryl, so glad that you shared this. This is giving many people so much hope. We continue to read about this option.
Great article, Mark, and congratulations on your 3-year anniversary; that was my best length of time after my initial diagnosis in November 2012. I relapsed, then achieved a complete response again, but this time for only 10 months and I think it was due to not completing a 6-month maintenance regimen. However, that was my decision; just did not want to take the thalidomide any longer as the constant fatigue feeling wore on me. My M-spike is only 0.1 so I’m not sure when I’ll resume therapy of Kyprolis/thalidomide/dexamethasone. I appreciate that my oncologist has allowed me to make those decisions me regarding my treatment. Hindsight: maybe maintenance therapy would have been the better choice. Take care and continued remission!!