Published on November 14, 2018
[Editor’s note: (10/2019): Cherie Rineker had a long battle with myeloma that included 16 lines of myeloma therapy, numerous hospitalizations, and incredible physical and emotional stress. She decided to end her battle with myeloma with physician assistance in Colorado by using the End of Life Options Act. Cherie was an incredible source of inspiration who embraced healthy living and the latest in cancer treatments. She will be remembered as a myeloma advocate leader with a big smile that lit up a room. Cherie's personal motto was, “It was always about love anyway.”
I started hearing about MRD a couple of years ago. Some said it was a big thing, but to me it did not really matter. You see, MRD which stands for minimal residual disease, or measurable residual disease, was something that I was so far from ever getting to.
When I was first diagnosed with multiple myeloma my numbers were through the roof. I believe my kappa light chain was somewhere around 15,000 (normal range is 3.3 and 19.4). It even went up a thousand after my first round of treatment with RVD (lenalidomide [Revlimid], bortezomib [Velcade] and dexamethasone [Decadron]). My Bence Jones was about 8,000—a person without multiple myeloma has zero. Interestingly enough, I did not have an M-spike, also known as the measurement of protein in the blood and a way of determining the disease load for many patients. My bone marrow must have been 100 percent myeloma because, after the numbers came down slowly, my first bone marrow biopsy done after nine months of induction therapy showed 80 percent in the bone marrow.
I asked my oncologist, Dr. Orlowski, what the percentage of myeloma should be before a patient went in for a stem cell transplant. He told me he preferred to see me somewhere between zero and five percent. Needless to say, I was pretty devastated when the test came back showing I still had 80 percent in my bone marrow. About three months after the first stem cell, another biopsy was done; it showed 30 percent. Feeling both optimistic that the transplant had been partially successful, yet disappointed that I still had not been able to achieve complete remission, I asked for another transplant. I figured if the first transplant brought my numbers from 80 to 30 percent, the second transplant would surely bring me into full remission. Sadly, this is not how it worked out for me, and I came out of the second transplant with 20 percent, which meant I had to continue treatment indefinitely. My Bence Jones and kappa light chains had significantly dropped. I believe they were at about 450 and 700, though don’t quote me on those numbers.
Over the next fifteen months, my numbers, with the help of Revlimid (without your typical seven days off) and carfilzomib (Kyprolis) three weeks in a row, continued to slowly come down. I can’t tell you how many times I made graphs of the approximate date I thought I would be in complete remission based on the rate at which the numbers were dropping. But like the game where you stand a few yards away from a wall, and you find you will never actually make it to the wall if you move half the distance with every step, I too seemed unable to get to complete remission. After those fifteen months I ended up with a significant plasmacytoma on my rib. It was large enough that it could be seen through my clothes, and it hurt like hell as it was destroying the rib on which it was attached. We had to change treatments again because the numbers started to climb. Changing treatments happened a total of thirteen times during the five years I battled this very stubborn, aggressive, insidious cancer. As I went from one treatment to the next, the time in between stable disease became shorter and shorter, and my immune system got weaker and weaker. By this time, I required monthly platelet infusions, and weekly neupogen shots. Fractures and bruises came way too easy, and even though the numbers were nowhere near the numbers I started with, the myeloma had become much more aggressive.
In December of 2017, after relapsing from my 13th line of treatment, I told Dr. Orlowski I was done with chemo. It wasn’t that I wanted to die, something that would happen for sure without treatment and likely very fast. No, I had come to realize that although chemo had kept me alive for five years, it was also slowly destroying my body. I had my hopes set on a trial I had heard about a year earlier, a CAR-T trial, where the body’s own immune system is trained to destroy the myeloma. This made so much sense to me that I put all my faith into it and started searching for availability.
The story about my CAR-T trial and how it saved my life is something you have likely read here on Patient Power. For me it was life changing, and lifesaving. A true scientific miracle come true. Within a month after I received my CAR-T cells both my kappa light chains, and my Bence Jones was undetected, and when they did my first post bone marrow biopsy, it too came back clean. Unbelievable! You can only imagine the incredible joy I felt in that moment. For me, the impossible had finally happened. Where just a couple of months ago I was looking death in the eyes, I was now a cancer free patient.
This brings us to the topic at hand: why is MRD important? A friend told me that the best thing one can achieve is sCR, MRD-, or stringent complete emission with no detectable myeloma. While researching this topic I came to understand that not all MRDs are created equal. Different testing tools are used at different hospitals and research facilities. Flow cytometry is how MRD is usually analyzed with the maximum detection sensitivity range from 0.0005 to 0.02. This is a huge amount of difference in sensitivity and, obviously, standardization in this technology will be important moving forward. The deeper your MRD status, the stronger your chance of staying in sCR.
Now, I am not a “normal” case, I am aware of that fact, especially around test time. I relapsed so many times that I ended up with Post-Traumatic Stress Disorder, something that many cancer patients go through and for which I am currently seeking counseling. Nothing made me more aware of the trauma I had gone through than my last visit with my oncologist. The numbers had not come back yet, and I was sent home with little knowledge of where my disease was at. It wasn’t until five days later that I received an e-mail stating that my test results were in. I was scared as I sat with the information for over an hour. Finally, I walked to the living room with my laptop and asked my husband if he could please check the results and only share them with me if the news was positive. It was a dumb idea of course. Still, my anxiety had gotten so bad that I simply could not open the mail myself. My husband, not realizing how scared I was, told me to stop being silly and just open the “damn email”. With shaking hands, I clicked on the link and saw the numbers. They were good!!! My kappa light chain was still below the normal range, and my kappa/lamba, another number that had never been normal, was perfect. I let out a cry of relief, my eyesight got blurry, I became unbalanced and had to grab onto my husband’s shoulder so I would not fall. He got off his chair and held me for a long time as I wept with joy, relief and emotional exhaustion. I didn’t realize how severe my anxiety was until that moment. I kept it hidden from my husband, my daughter and myself. My husband whispered in my ear, “This is a part of cancer most people do not understand.” Shoot, until I was in CR I did not understand how people in complete remission could be so nervous and seemed to wait for the other shoe to drop. I promised myself I was not going to be one of those people, and here I was falling apart even though I knew I was in stringent remission and had no residual disease. I think it’s because I relapsed so many times, because my disease was so aggressive, and because I failed all possible treatment options that were available to me that I was so scared.
Yesterday I reached out to my trial doctor, Dr. Berdeja, to find out how my status had been determined. He told me my MRD was calculated by NGS, a clonoSEQ method which measures disease to 0.000001. In other words, no abnormal plasma cells were detected in one million cells. This news has been incredible to hear. Knowing this number, from what the data has shown me, relapse may be very unlikely for me, at least not any time soon. Just knowing that has helped with my anxiety tremendously in this short time and wish I would have asked about it prior to my last visit.
Healing happens on many levels. Physically I am healthier than I have been in over a decade. I know I had myeloma well before I was diagnosed. I know the emotional healing will come as well. My daughter, eight months’ post-CAR-T is becoming a normal kid again. She no longer flinches every time a child in her class coughs. She no longer has panic attacks in school that require her to leave the class room and miss a lot of work. She is becoming a typical teenager; more outspoken and annoying, just like she should be. As for me, life has been picking up. I started doing reflexology again, something I loved doing prior to my diagnosis. I am teaching yoga again, although a gentler kind, without much twisting. I continue to write, to spread awareness and make myself available on Facebook for people who need help—especially emotionally, because I know how hard this disease can be on our psyche. I have been invited to several pharmaceutical companies to share my story to the many men and women who work tirelessly toward a possible cure—working long, hard hours without ever actually seeing the results of their hard work, people like me. I feel blessed beyond words for the opportunity I was given to participate in this trial, because I know I was literally dying trying to get into it. I do not take life for granted anymore. Cancer has taught me that it is the friendships we make, the love we give and the love we get that matters the most in life. We are only on this beautiful planet for a very short time and the best way to live is to matter to others, to love and give selflessly. Today, that is where I get my joy.
[Editor’s note: Cherie will be joining Patient Power on Monday, November 19 for a live webinar: “Measuring My Myeloma with MRD Testing: What Is My Disease State?” Register now to learn more about Cherie’s myeloma journey, the impact of minimal residual disease (MRD) testing and what results mean for patients.]
Cherie Rineker, author of A Pilgrimage Without End, How Cancer Healed My Broken Heart, lives with her husband and daughter in South East Texas. She is currently working on her next book, “A Pilgrimage Toward Health, Keeping Hope Alive.””
You can contact Cherie at firstname.lastname@example.org
Follow her on Facebook and Twitter @myelomaauthor
©2018 Cherie Rineker
Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.
Keep up the great work! You are my go-to source for the latest myeloma news.