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How the CAR-T Trial Gave Me My Life Back (Part 3)

How the CAR-T Trial Gave Me My Life Back (Part 3)
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Published on October 22, 2018

oscar_juanSeveral hours after my infusion, right after I ate, I lost my dinner, then my lunch, then my breakfast. The nurse on staff came in and gave me Phenergan, an anti-nausea medicine that always did wonders. Unfortunately, some of my dinner already made its way into my lungs, and on top of everything else that was about to happen, I ended up with a pneumonia. The next five or six days were rough, but thankfully almost entirely forgotten. To this day most of it remains a blur. That night the war started.

I had fevers of over 103F. This was one of the more common symptoms associated with cytokine release syndrome, caused by the rapid release of cytokines into the blood. My spine throbbed so badly, it felt like it had a heartbeat of its own, and some of my ribs (probably where a previous tumor had been) swelled up which made it impossible to lay down in almost every position. You could safely say that I felt a bit on the miserable side. However, I had no doubt that the CAR-Ts were working. The nurses checked in on me often and I was put on oxygen, primarily because of the pneumonia. I was also given morphine, and though the struggles were real and intense, the medicine I was offered helped me get through the worst.

Two dear friends and volunteers from MD Anderson, Marc and Twilight, were incredibly generous and made the fourteen-hour drive in order to keep me company that first week when my husband couldn’t. I met them during my first stem cell transplant, and we became like family almost instantly. I felt bad that I was unable to be a good host. They drove all this way only to catch me at my worst, and it was not until a couple of months later that they told me about our conversations and the food they brought me every day. Apparently, I was in the worst shape my friend Twilight had ever seen me in, and she did not want to leave me. She thought I could die and she could not bear the thought of me dying alone. Months later I recalled our conversation, me grabbing her hand and assuring her that I would win this fight and for her to go home with her husband. I wanted to put her mind at ease, even though in that moment I was far from believing the words of comfort I gave her. 

After almost a week, like magic, from one day to the next, the fog lifted, the pain subsided and the fever came down. I wanted to take a shower, I wanted to eat, and I wanted to go for a walk, though ever so slowly. Over the next week, the walks got longer and I went around the hospital floor many times, iPhone in hand, my favorite songs of the eighties playing. By this time, I could not wait to get out of the hospital as I was bored out of my mind; something the doctors took as a very good sign. Though I still needed four hour antibiotic infusions three times a day for the pneumonia, my oxygen was back to normal, and I had more energy than I had in months.

I will never forget the day my husband and daughter came to be with me. It was the last day of my two-week stay in the hospital and time could not pass fast enough. All I wanted was to see my husband and my baby girl. I felt as if I had a near death experience and that I walked away from it feeling strong and empowered. If I could handle this, I knew I could handle anything! Finally, the door opened and my baby girl walked in with a big smile on her face, closely followed by my husband. We all cried happy tears as we embraced each other for a very long time. 

Though my immune system had taken a beating and I needed almost daily shots for that, I felt great. So much so, that on the first morning out of the hospital, I got on the elliptical machine at our hotel. I had not done this in over five years! Every day thereafter, I climbed the stairs to the top floor of the hotel. To think that just a month prior, I could not even bathe myself! My quick recovery felt nothing short of a miracle. During my last visit with Dr. Berdeja, prior to going back home to Texas, he handed me a piece of paper with a big smile. It showed my bloodwork on a graph. The numbers that tracked my cancer had made a sharp dive and were below normal! 

I let out a cry of joy nd gave him a big hug. During all my years of treatment this had never happened! The results showed what I was already feeling, for the first time since my diagnosisI was cancer-free; something my next bone marrow biopsy and PET scan would confirm. 

Since that day I have continued to recover and the results have been nothing short of amazing. Today, just a couple of months after I received my genetically modified Terminator/Elf cells, I feel as good and even better than I did before my myeloma diagnosis. It is funny to think of myself with my CAR-T multiple myeloma obliterating cells. I am genetically modified, or genetically enhanced as I like to say. My husband jokes and says I can no longer go to Whole Foods or the alarm will go off. For a person that was against GMOs and did not like doctors and medicine very much, I have changed my mind. Today I very much appreciate medicine and science, and I am very grateful for the strides that have been made in cancer research. 

Today, five months after the procedure, my immune system still has a way to go to get as functional as it can be. It took four months just for my platelets to get back to 50 million, the number they had to be in order for me to qualify for the CAR-T trial. Then again, if I look at how long my immune system had been bombarded by the cancer and its treatment, four months is not that long. My white blood cells are still below normal, but my ANC, the number that had me climbing the stairs and almost kept me from getting into the trial, is now in the normal range without the help of shots, for the first time in years!

CAR-T taught my immune system how to fight multiple myeloma in a matter of weeks! What two stem cell transplants and thirteen lines of treatment had been unable to do in over 65 months, CAR-T did in less than a month. I don’t like to call myself a cancer patient anymore. I do not say I am in remission. Instead I like to say I am cancer free. Today I live my life like everyone else, and like everyone else, I can get cancer. I hope that my modified T cells will continue to stick around to fight possible relapses, so that it will provide long-term protection. 

Where do I go from here? Some people have asked me if I would do it all again, considering how tough the road was. My answer is always an affirmative Hell YES!Sure, the trial was rough, but only for one week. My transplants were comparatively much worse, as were the never-ending chemo treatments. However, Myeloma destroyed a lot of my bones, so going back to massage therapy, a job I truly loved, is pretty much out of the question. Sadly, and surprisingly, after we came back to Texas, my daughter’s anxiety grew worse instead of better. It was as if five years of bottled up fear came rushing to the surface. It appeared she had post-traumatic stress disorder and we took her to a psychiatrist who diagnosed her with generalized anxiety disorder and obsessive compulsive disorder that she developed in order to feel in control over what was happening. She is very afraid of germs and getting sick. I continue to reassure her and remind her that it was my immune system that did not work, and that hers is very strong indeed. It seems as if my words fall on deaf ears and for now she needs medicine to help her cope. We are hopeful that her issues will subside as I continue to get healthier. Unless you have gone through what we have, you can’t truly understand how far reaching the ugly tentacles of cancer truly are.

I will continue to bring awareness to multiple myeloma, an often forgotten and unheard of cancer that still takes way too many lives. Awareness is needed for early detection which leads to longer survival and better quality of life. I want to help those who struggle with their diagnosis, who need help when they feel helpless, and give them hope when they feel hopeless. I want to be there for others by believing in them, when they no longer have it in them to believe in themselves. I have been there, I can relate. People always see me with a smile. Despite everything that happened to me, I feel blessed and lucky indeed. I have met some incredible friends on this journey and learned a lot about myself and what truly matters to me. It took a lot of people to get me to where I am today, and I am beyond grateful that I had my tribe of supporters cheering me on along the way. I am well aware that not everyone is that lucky. 

As I am editing this article one last time, my daughter and I are ready for a concert tonight. We are going with a group of friends. Over the past years I have had to forego so many milestones, special events and parties. Tonight, I get to go with her and her friends. I will get to be in a crowd and not wear my mask. I will have some wine and sing and dance along to the music. From now on I will live my life to the fullest, and that my friends, is priceless!

For now, CAR-T therapy is one of the most promising treatments for multiple myeloma and other blood cancer patients. Currently about 20 registered trials are being done in the US and around the world, and sofar the response rates for this treatment have been amazing. Patients in these studies have undergone an average of seven prior treatments before enrolling. Outcomes like the one I experienced could predict the possibility of a revolutionary breakthrough in cancer treatment. It is my hope that CAR-T therapy will change multiple myeloma from an incurable to a curable cancer. 

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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