Cancer update - Part 4

Once we arrived in Calabasas, we met the doctor and really liked him and his staff. After he reviewed my chart and scans from the hospital, he recommended that I have at least five more treatments of B&R since my cancer was so advanced. I didn’t like the idea of five more treatments, so I agreed to three more and then a scan to see how it was working. Since I was going to be treated at his clinic for several months, we decided to rent an apartment in nearby Woodland Hills, CA.

After three more treatments of B&R, the ascites subsided, but I was still struggling with the pleural effusion in my left lung and continued to have a Thoracentesis performed about every two weeks. I think I had around 15 total before a port was placed so I could drain my lung myself. My scan showed that the chemo wasn’t working as we hoped, so the oncologist recommended that I consider having CAR-T, a relatively new immunotherapy treatment where they extract your own T-cells and modify them in a lab to attack the cancer, and then infuse them back into your body. After researching CAR-T, I realized it worked similar to the Pancreatic Enzyme treatment. Cancer cells hide from the body’s immune system, so the theory behind the Pancreatic Enzyme treatment is that they attack the protein around the cancer cell and expose the cancer to your T-cells, or natural killer cells. CAR-T therapy seemed to work in a similar way, in that it binds to specific antigens on the cancer cells to reveal the cancer to the immune system. Here’s an excerpt from explaining how CAR-T therapy works:

“CAR T-cell therapy makes T cells focus their attention toward a substance the body thinks is harmful called an antigen, which is found on the surface of specific cancer cells. In the manufacturing of CAR T cells, a protein is added to the T cell’s surface to help them achieve this focus. This protein is called a chimeric antigen receptor, or CAR. This CAR protein is actually made up of 3 other proteins: 1 protein that recognizes antigens on the cancer cell and 2 proteins that signal the T cell to activate when that first protein attaches to an antigen on the cancer cell. When a T cell has a CAR added to it, it is called a “CAR T cell.” CAR T cells work by floating around the body and looking for cells that carry the antigen programmed into the CAR protein, like certain cancer cells.

When a CAR T cell comes in contact with an antigen on a cancer cell, it activates. Activated CAR T cells multiply and signal to other parts of the immune system to come to the site of the cancer cell. These signaling proteins are called cytokines. All of these cytokines and activated T cells then cause significant inflammation focused at the cancer cell, which causes the cancer cell to die. If all of the cancer cells die, the cancer can become in remission, which means the cancer has disappeared either temporarily or permanently.”

After studying up on CAR-T therapy, I found it very promising and agreed to meet with the CAR-T team at City of Hope hospital in Duarte, CA. We made the drive from Woodland Hills to Duarte and met with the lead oncologist. All of my medical records were sent to him prior to my visit, and after he evaluated me he said he thought that I would be a good candidate for CAR-T. However, my insurance would have to approve the treatment, which would cost upwards of a million dollars, not including out of pocket expenses. He was also concerned that as a Jehovah’s Witness I wouldn’t take a blood transfusion if needed during the treatment. He didn’t think the CAR-T team would agree to treat me without the use of blood due to liability issues, so he said he would meet with the team and get back to me. I won’t go into details here, but after meeting with the team several times they agreed to treat me. Fortunately, my insurance also approved the treatment.

The next step was to extract my T-cells and send them to a lab for modification. Once the lab receives the cells it takes about four weeks to get them back. Mine were due to arrive on October 6, 2021 so I was hospitalized on October 1, 2021 to begin three days of chemotherapy called lymphodepletion, so that the normal immune system wouldn’t think the CAR T-cells were abnormal and reject them. After the three days of chemo I was given two days to rest before the infusion of the CAR-T cells on October 6th.

Once my new CAR-T cells arrived, they were infused back into me. Again, I won’t go into details here, but I discuss the many potential side effects of the CAR-T cell treatment in our new book. I experienced little to no side effects from the treatment. I was in the hospital for a total of 17 days and then released. A follow up PET scan was scheduled for 30 days to see if the treatment worked. I had the PET scan and expected it to come back with cancer still in my body. My body was so riddled with cancer, they couldn’t even detect my bladder in an ultrasound. Unbelievably, the PET scan came back as “no evidence of disease” (NED). We were all shocked and beyond ecstatic, including the doctors! I was amazed at how fast the treatment worked.

Currently, I am still in California making my follow up appointments each month with my CAR-T team at City of Hope. I am also awaiting surgery to remove my ureteral stents. Overall I feel like my body is recovering and I’m feeling better. The only noticeable side effect is neuropathy in my feet, which I’m sure is from the chemo. At times it’s very painful and I can’t walk on my feet. I’m treating it with a tens machine and topical ointment, but nothing really helps to relieve the pain. I’m also working closely with Pamela to see if I can get back on a maintenance dose of the pancreatic enzymes. Since CAR-T therapy is still relatively new, other treatments including alternative treatments, may interfere with the CAR-T cells. I’m cautious and keep my CAR-T team informed of any other treatments I’m considering. Pancreatic enzymes have not been approved yet.

Time will tell if the CAR-T therapy has rid me of cancer for good. One can hope.

Note: A CaringBridge Site was created for Rodney. It‘s a caring social network to help people stay connected with family and friends during a health event.

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