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How the CAR-T Trial Gave Me My Life Back (Part 2)

How the CAR-T Trial Gave Me My Life Back (Part 2)
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Published on October 16, 2018


After one more trip to Sarah Cannon, my T-cells were harvested early February. This was done through a process called leukapheresis which spins off white blood cells and returns the rest of the blood back to the patient. The procedure required that I have a catheter put in my neck the day prior to the procedure. The harvest itself took only about four hours. Other than some serious tingling in my hands, feet and mouth due to an electrolyte imbalance, something that was alleviated by a calcium infusion, as well as the fact that all my blood was being circulated through a high-tech machine outside the warmth of my body, then returned at a lower temperature requiring many blankets to stop my teeth from chattering, all went well. 

After the cells were collected and taken to the lab, a modified form of HIV was used to insert new coding into the gene that makes T cells. Through the insertion of this new coding, the virus turned my T-cells into a mixture of my genetic code and its own. The new CAR-T cells were now programmed to locate and kill the cancerous myeloma cells by seeking out their BCMA target on the surface of the cell, like Arnold Schwarzenegger was programmed to kill Sarah Conner in the Terminator. Once my T cells were transfected (the process of deliberate introduction of nucleic acids into the T cell), they were cultured (pumped-up) and expanded in a laboratory for four weeks where they turned into hundreds of millions of myeloma Terminator cells. We drove back home and had to wait while my army of CAR-Ts were multiplying somewhere in New Jersey in a Petri dish. 

In the interim, I was put on bridge chemotherapy, because my myeloma was growing out of control. Even though the actual number did not look so bad, the viciousness with which these mutated cells were attacking my body was so much worse than they had been five years earlier, when the numbers were much higher! Unfortunately, the chemotherapy did not work. It was a very scary time. In just a short time two plasmacytomas (a plasma cell tumor that grows in soft tissue or on the skeleton) had grown. One was on my sternum and fractured it, making it hard to breath. When I had to sneeze or cough, the pain was excruciating. The other, about the size of an orange, put so much pressure on my spine that I felt as if it had snapped it in half. I ended up in the hospital for twelve days to try and control the pain. Unfortunately pain medicine, even the kind given through an IV, was no match for the pain the tumors were causing. All I could do was lay in bed reclined for those twelve days. I was unable to take showers, walk, and even going to the toilet, which was put right next to my bed, was all but impossible. I was feeling weaker and sicker than ever before. Had it not been for the hope of the CAR-T, I think I might have thrown in the towel. This was no way to live. Thankfully I was given several rounds of radiation, which reduced the pain in my lower back dramatically.

After four agonizing weeks, during which we did not know if I would be able to hang on, the time came for my husband and I to make the long drive back to Nashville. Shawn requested family leave and was granted one week. This time I was leaving for six weeks. We arranged for our daughter to stay with close family friends. Angelina was a real trooper; her Mom was not. I was unable to hold back my tears, The stress, the pain, the opioids, the uncertainty, the fear. it was all too much. I had so much faith in this trial, but I had so much faith in all the treatments I had previously been on, and none of them worked for very long. When we had to say good-bye, I was not sure if I would ever see my daughter again. We hugged and though I did not want to let her go, I knew I needed to and make her feel that it was all going to be okay, that this was not a big deal and that she would see me soon. I saw the concern in her eyes, but she tried to hide it from me, gave me a kiss and ran up the stairs to play with the other girls.

On Wednesday March 7, I started my three days of lymphodepletion chemo (Cytoxan and Fludarabine). This was required in order to eradicate the leftover T cells in my blood so they could make way for the CAR-T cells. By that time, I had no energy left whatsoever. All I wanted to do was lay around and sleep. I took a blanket with me everywhere we went. I would wrap myself in a blanket when we went to a restaurant, the store to get groceries, and when we were in the hotel, all I wanted to do was lay in bed covered under several blankets. 

During infusion of the T-cell-depleting chemo, I needed their preheated blankets on top of my own, all the while my husband sat next to me, comfortable in a T-shirt. When the three days were done, I was given the weekend off and on Sunday I had to check into the hospital, and my husband had to go back home. As much as I hated to see him go, I knew my daughter needed him to be there. Five years is a long time for a child to deal with a parent’s illness. She and I were very close. I can only imagine how scary it was for her. However, what she had kept inside since my diagnosis was beginning to come to the surface. She had a lot of anxiety and suffered from panic attacks in school. 

We knew I would be well taken care of by the staff at Sarah Cannon, with their very professional and friendly nurses. March 12ththe day we had been waiting for finally arrived and I was given back my GMOed T cells. Four small bags, pure white liquid inside, were given to me by nurses dressed in blue suits, thick gloves and goggles, those big ones that cover both your eyes and nose. They looked quite daunting, as if they had just walked out of the movie Outbreak, with Dustin Hoffman. Six times they tried to put an IV in my arm for the infusion of the CAR-T cells. Though my port (an access device for patients who need frequent or continuous administration of chemotherapy)was already accessed, the IV was needed in case I had an allergic reaction to the infusion. There was a time when my nurses had loved my veins, they were plump and near the surface, but the three years of abuse prior to getting a port had shot them to hell. Thankfully, when their expert infusion nurse was called in to access my vein she succeeded on the seventh attempt! Life is all about perspective. Prior to my diagnosis five years earlier, I did not like having blood drawn at all! I had only had a couple of IVs put in my arm during the delivery of my children and back then I thought it was a big deal. Now, every time one of the nurses made a go at it, I would just relax, let out a big sigh, and go with the flow. It was no fun, but it was as it was, and complaining about it would not make it go any better. By this time, I felt very calm, very much at peace. I had surrendered, for better or worse, and trusted my doctor, the nurses, and the trial implicitly. There was no more going back, no changing my mind, so I relaxed and let the process carry me through.

Once the infusion was over, it was time to wait. Time for the storm! Time for war! A war of life and death. Death to multiple myeloma! I had watched the movie Lord of the Rings a week earlier. In one particular scene the Elves led by Legolas, Prince of Mirkwood and master bowman, fight and kill hundreds of Orcs (ugly demonic like creatures) with bow and arrow. I envisioned my Car-T’s as the Elves, resilient, fast and limber, strong and brave. Multiple myeloma was the enemy, the Orcs. Slimy, treacherous and vile, they were no match for any of the immortal Elves I had seen pushed into my veins. I know it may sound crazy, but imagining the fight this way, somehow gave it more power, at least to me. By seeing the fight in this way, I became an active participant, cheering my team of Elves on.

I have always been very susceptible to nausea, unfortunately, this time was no different. Several 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 promethazine (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. 

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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