By Dr. Darla Shaw
When I first was diagnosed with lymphoma at age 79, I asked about stem cell transplants or infusions. I was told that I was too old to go through this procedure and would have to go the regular chemo and radiation route.
Five years later my lymphoma returned for the third time and I went back to Sloan Kettering. I was now told I was possibly a candidate for a car t cell infusion. How could this be possible? I was now five years older and back then I was told I was too old for the procedure.
The possibility for the infusion, however, would be due to my mental and physical state. Mentally, I was still giving lectures and presentations at age 84. I was also still walking daily and going to the gym despite my arthritis, neuropathy and lymphedema. I was affirmed for the infusion.
Before agreeing to the infusion, I was asked to read extensive educational material about the side effects of the procedure, and the harvesting of my own cells. Everything that I read about the infusion, made me more and more afraid, but I realized that this procedure might be my only chance of adding a few more years to my life.
I did sign off on the procedure and spent an entire day in a hospital bed having the cells harvested. I then had to wait for five weeks for the cells to be taken to a production facility where antigens were added to the mix. These antigen receptors would hopefully attack the cancers cells, kill them and increase my capabilities for a longer life.
When my revitalized cells were returned to the hospital, they were inserted back into my body. This procedure took only 15 minutes and there was no pain involved.
Since car t cell infusions are fraught with serious side effects, I would now have to be under constant watch in the hospital for at least one week. The doctors would be looking for signs of an irregular heartbeat, difficulty breathing, tremors, confusion and loss of memory, vomiting, loss of weight, diarrhea, chills, and of course, death.
After that week in the hospital, I would then have to be housed near the hospital for another two or three weeks so that if symptoms did suddenly occur, I could be transferred immediately to the emergency ward within a short distance from where I was staying
After a month, and if all went well, I would be recuperating for a period of eight weeks at home. I would go through physical therapy at home and then at an outside facility . I would also have regular lab work done and go for a pet scan three months after the infusion.
Fortunately, due to modified infusion treatments, I had only a slight seizure and just extreme lack of appetite and energy for the period of eight weeks.
When meeting regularly with P.A.’s on zoom while at home, I asked why I had not been able to speak to someone in my age group (mid eighty’s) that had gone through the car t cell infusion procedure. I would have liked to communicate with someone who had previously experienced the procedure.
I was told that there were very few people in my age group that qualified for the procedure or wanted to take the risk. There was also no one in their medical group that had been trained and agreed to talk to others about what they had experienced.
I then decided that communication with the elderly about car t cell infusions needed to be established and I went through training to become a mentor. I now talk to people about my experience and how the pamphlet scare tactics were worse than the procedure. I make certain that I do not tell them what to do but focus on only my own experience.
Since having the infusion, I have had a gift of life for almost two additional years. I have been able to see my grandchildren graduate, become involved in community service projects and even teach on a part time basis. My travel distances are not international, but more local in nature.
If anyone reading this article is considering the option of car t cell infusion, feel free to contact me and I will give you more details on my experience. Also realize that improvements regarding procedures are being made on almost a daily basis and you need to be aware of these changes to talk to your doctors in a knowledgeable way.
I was shocked to find that as I got older, I was able to have a procedure that before was not possible for me. We are all so fortunate to have cancer researchers who dedicate their lives to our well-being.