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How the CAR-T Trial Gave Me My Life Back (Part 1)

How the CAR-T Trial Gave Me My Life Back (Part 1)
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Published on October 8, 2018

cherie-rineker3Chimeric antigen receptor (CAR) T cells are a living drug. T cells are a type of lymphocytes (white blood cells) that identify and remember invading bacteria and viruses. They do this by recognizing markers on the surfaces of infectious or malignant cells. One such protein marker in multiple myeloma is BCMA (B-cell maturation antigen), a highly plasma cell-selective protein. Multiple myeloma is a blood cancer of the immune-fighting plasma cells.

Sixty-five months is a long time to be sick. When we get the common cold, we feel crappy for a few days, maybe a week, then life goes on as usual. Unfortunately, this is not the case with cancer. Even when treated with chemo, the disease often becomes resistant to the drugs, and in turn can become even more aggressive than when it was first diagnosed. 

Multiple myeloma invaded our home in November 2012. It took over our lives and invaded our thoughts, taking away many hopes and dreams. I had to give up the dream of both starting a health spa and being the kind of wife and mother I aspired to be. Instead, just surviving multiple myeloma became my full-time job.

When I was first diagnosed, I remember my oncologist telling me that some people reached remission in just a couple of months. I truly believed that was going to be me. But more than five years and after over a dozen different forms of chemotherapy later, I had come to the realization that I was not one of those lucky patients. As a matter of fact, I was quite the opposite. I went through those 13 different forms of treatment at a phenomenal pace and I felt my body slowly decline. Even though all these different forms of treatments had kept me alive for five years, both the cancer and the treatments were slowly killing me. Chemotherapy has made incredible strides in the past decades, but it remains a medicine that attacks cells indiscriminately, destroying both cancer cells and healthy cells. This was evident with the many ER trips we had to make as my body declined and my immune system became overloaded. When, for the 13th time the treatment failed, my oncologist recommended that I try a combination of four drugs instead of the usual three, I told him NO MORE CHEMO!!!

About a year earlier, I saw a news program in which a new therapy using the measles virus had brought a myeloma patient, who had run out of options, into complete remission (five years later she remains cancer free). I was intrigued by both the unusual form of treatment as well as its apparent success in achieving complete remission just weeks after receiving it, and it had given me hope. This show introduced me to the CAR-T cell therapy, and I told my doctor that if this trial study ever came to MD Anderson, my home hospital, I wanted to be the first one on that list. 

Unfortunately, on the day I said no more chemo, CAR-T was not yet available at our hospital, and I had to search outside my usual place of treatment (MD Anderson) which had also become my place of comfort. The whole process of locating CAR-T studies and applying to participate in one felt daunting.

Not only were the requirements very specific most hospitals had long waiting lists and required that I travel, sometimes long distances, to the hospital site just to see if I even qualified for entry into the study. This entire process was made even more difficult by my failing physical condition. By this time both my immune system and my spine were total wrecks, which made traveling a big challenge. 

Dana, my good friend and an incredible patient advocate, put me in touch with Brian McMahon, founder of SparkCures, an organization that helps multiple myeloma patients find clinical trials, and by the end of the year we found that a relatively unknown cancer center, Sarah Cannon in Nashville, Tennessee, with a fairly unknown myeloma specialist Jesus Berdeja, that was doing a phase two CAR-T trial. I immediately contacted Dr. Orlowski, my local oncologist and asked him to write a referral to Dr. Berdeja. I also decided to write him myself. I felt it was important that he not only know me as a patient, with a bunch of lab reports, body scans and an extensive history of prior lines of treatment, but that he also know me as a wife, a mother and a person who had a life that mattered to her children, husband, friends and loved ones. I attached “Dying to Get Into a Trial”, an article I wrote describing the challenges of getting into a CAR-T trial. I lost a dear friend who literally died while waiting to get intoa CAR-T trial. The loss devastated me, and I did not want the same to happen to me and my family. The next day I received a personal response from Dr. Berdeja. He thanked me for my letter and a couple of days later I followed up with his office and was able to arrange an appointment. 

Driving to Sarah Cannon takes about 14 hours from our home in Texas. Though flying would have been easier and much faster, it was out of the question. My immune system was shot and I had a tumor growing on my spine at T12, causing significant pain. My friend and neighbor Amanda, who had lost her son to cancer a few years earlier, was willing to do anything to help me survive mine. She told me that she would drive me back and forth as many times as it took. My husband, wanting to be with me, had to work and take care of our daughter. His work was our only source of income and without it we would lose our health insurance. As much as I wanted him to be with me, it was out of the question. Cancer is horrible at any time in life, but dealing with it while having young children makes it all the more challenging. Amanda is one of the people to whom I owe my life. Without her generous offer to drive me, we may have had to abort our plan. We left early in the morning. The sun would not be up for many hours. I had five pillows tucked all around me, was wrapped in a warm blanket because I was cold all the time, and my chair was completely reclined. All this, together with the opioids I had to take every three hours, made the trip bearable.

Dr. Berdeja saw me the next day and said I would make a good candidate for the trial. I was ecstatic!  I thought this meant I was automatically given a spot. When he left the room the research nurse told me that there were more than 30 patients on the list ahead of me. It was hard to hear because I knew I did not have that kind of time. With thirty people ahead of me trying to get into the same trial, it was a long shot that I would get in and I doubted that they would even call me. Very disappointed, we drove home that day and ended up in a snow storm. What was supposed to be a long one-day drive turned into a three-day disaster. Interstate HWY-40, with many more 18-wheelers on it than cars, most of which seem to drive well over the speed limit, is an intense highway to travel on. 

Add to this the snow that was piled high on both sides of the road, frozen windshield wipers which required us to stop about every thirty minutes to pour anti-freeze over the window in order to see, and the return trip home became a nightmare. 

Just a few days after we made it home, I received a call from Dr. Berdeja’s office telling me I could be the next possible candidate if I could be there in two days. Nothing was going to stop me from getting my name on that list! Amanda and I got back in the car and I became Sarah Cannon’s second Phase II, CAR-T candidate. I do not know what happened to the thirty plus patients who were in line ahead of me. I know one, my friend, had passed away. Others may not have passed the rigorous qualifications. Some may have gone back on chemo. Dr. Berdeja and I both use my story as an example that no matter how long your shot is at getting into a trial, don’t get discouraged and keep trying. I must mention that I had applied at two other places. One never needed me, and the other did not accept me.For me, what seemed like a hopeless situation just a month earlier, turned into an amazing success story, one I am here to share with you today! 

In order to qualify for the CAR-T study, my myeloma biomarker counts had to be at minimum a certain number, my immune system had to be strong enough, and my lungs, heart and kidneys had to be healthy enough to handle the fight that would surely happen once my reprogrammed and re-engineered T cells were infused back into me. In addition, my platelets had to be at least 50 million, a number they had not been for many months. Fortunately, when I stopped all chemotherapy, my platelet count rose to the required level fairly quickly. My ANC or absolute neutrophil count was another story. I would not have made it into the trial had it not been for research nurse’s suggestion that I climb the hospital stairs each time the test came back too low. As hard as it was, I was not going to let a couple flights of stairs stop me from getting into the trial. So with Journey’s Don’t Stop Believing blasting from my iPhone, hands and teeth tightly clenched, I climbed the steps of the hospital’s four floors up and down three times. Apparently, this would shake the neutrophils off the lining of the blood vessels so they would be picked up in the blood test that would immediately follow. Over the course of one month I had to do this three times.  It was this which kept me qualified for the trial, although barely.

Cherie Rineker, author of A Pilgrimage Without End, How Cancer Healed My Broken Heart, lives with her husband and daughter in Southeast Texas. She is currently working on her next book, A Pilgrimage Toward Health, Keeping Hope Alive.

This article is an excerpt from A Pilgrimage Toward Health, Keeping Hope Alive, which will be released in 2019.

You can contact Cherie at

The cartoon was made available by Pedromics at Deviant Art

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.

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