The prognosis for refractory DLBCL is poor. If you respond to salvage chemotherapy, such as RICE, then the protocol is to get an autologous stem-cell transplant (your own stem cells are used vs an allogenic stem-cell transplant that relies on donor cells and has higher risk of complications). RICE is considered a “bridge” chemotherapy in that it serves as a figurative bridge to another procedure or therapy. In my father’s case, it’s meant to be a bridge to a stem-cell transplant. For patients who aren’t receptive to chemotherapy, a stem-cell transplant is not an option.
After 2 cycles of RICE, my father had a clean PET. We literally saw the mass in his arm completely diminish after the first cycle. My father is very fortunate in that he is so receptive to chemo with very little side effects. At this stage, his oncologist highly recommended an auto stem-cell transplant. In an autologous stem-cell transplant, stem cells are removed from a person, stored, and later given back to that same person. After the stem cells are removed, a patient is given a very high dose of chemotherapy that would otherwise destroy the stem cells. It’s the high dosage of chemotherapy that does not come without risks, such as infection.
The oncologist’s rationale was that a high dose of chemotherapy used in auto is not so different from 6 cycles of RICE, which was a treatment plan we had considered at first. We consulted with other top oncologists at Moffit, and the Mayo Clinic, in addition to Cornell and MD Anderson, Jacksonville.
Moffit and MD Anderson were in agreement that an auto stem-cell transplant was our best option. They believe that it’s his best chance of a “cure”. However, when I asked them to define “cure” they said it just meant a 5 year remission. Many people have relapses even after a stem-cell transplant and given my father’s history with Follicular lymphoma, his was very likely to return. The side effects of auto can also be extreme, completely changing your quality of life.
The Mayo Clinic and Cornell recommend against an auto transplant and were in favor of a relatively new treatment called CAR T. They agreed that in my father’s case a stem-cell transplant would likely be unsuccessful in the long-term. I asked them about a “wait and watch” approach since my father had a clean PET. They felt that we needed to take action now because DLBCL comes back more aggressive each time. The first time it started in his lymph nodes. This time it came back in the bone. Next time, it could be the brain.
I decided to do more research. I joined many Facebook groups to hear real stories from people who had DLBCL, had undergone an auto-transplant, and those who were treated with CAR T. I was saddened and humbled by hearing their stories. My heart especially broke for the parents who were desperately seeking information for their young children.
After everything I read and people I talked to, we decided against an auto stem-cell transplant. The risks seemed too high and the potential reward, too low. It is very unsettling going against recommendations from some of the best oncologists in the world. Yet, we had to follow our own intuition. Ultimately, the decision would be my father’s to make but we were both on the same page that auto was off the table.
CAR T seemed to be the better approach. Unlike auto stem-cell treatment, you do not need to have a clean PET for CAR T. It is a type of treatment in which a patient’s T cells (a type of immune cell) are changed in the laboratory so they will bind to cancer cells and kill them. T cells are taken from a patient’s blood. Then the gene for a special receptor that binds to a certain protein on the patient’s cancer cells is added to the T cells in the laboratory. The special receptor is called a chimeric antigen receptor (CAR). Large numbers of the CAR T cells are grown in the laboratory and given to the patient by infusion.
While we are hopeful about CAR T as a last resort, we didn’t feel comfortable rushing into that since my father had a clean PET. It also only works 40% of the time and once that is off the table, there are few options left (they are starting to test CAR T with donor cells, and there are immunotherapy clinical trials). We wanted to buy as much time as possible as there are so many new advances in lymphoma research and treatments. Insurance also doesn’t cover CAR T as a second-line treatment, meaning we would have to wait for his cancer to return a third time to qualify for coverage. To my understanding, this is something that will likely change in the next few months as the medical community is seeing more and more positive results from CAR T.
After considering all of our conventional options, I decided that they weren’t good enough. I distinctly remember sitting in that hospital room with my dad after we received his poor prognosis and our very limited options. It was hard fighting back the tears and I knew my dad was doing the same. I refused to give up and I refused to believe that he was given a death sentence. That night, we decided to start our search for alternate options to keep his cancer in remission forever.
Thus far, my dad has gone through 3 cycles of RICE. He will be going through one more cycle as well as radiation with the hope of cleaning out any undetectable cancerous cells. Once his chemotherapy is over, we will begin our own protocol inspired by the stories of Joe Tippens and Rodney Stamps. Note, Tippens started his protocol during chemo and Stamps did it in lieu of chemo.
#RCHOP #RICE #CART
