Follow-Up #18 and NEWS from Portland, OR

I had a very early CT scan appointment on a Monday in late April at NIH. Similar to the way it was one year ago when I visited, all who enter Bldg. 10 were to wear masks at all times, but unlike last time, my husband was able to accompany me. A COVID screening station just inside the door was our first stop. We were given fresh masks--replacing those we were wearing--and asked the now-familiar litany of health questions before we were allowed to make our way to Phlebotomy.

Once again instead of the yucky iohexal oral contrast, I was asked to drink "three paper cupsful of water, using a straw placed under (my) mask." Can do.

Later that day, we met my new (#8, if you're counting) immunotherapy fellow, K.H., in the clinic. The attending physician joined us shortly afterwards. They found nothing especially worrying on the scans or bloodwork, but do want me to have an MRI of my liver within the next 3 to 4 months. The attending doc downplayed the findings as, "Stuff we've seen before, that will probably go away like it has before." The radiology report notes: Stable subcentimeter low density lesions in the liver that are too small to be accurately characterized. I've seen notes like this on past reports, so I am choosing to not freak out. I still am officially NED and optimistic that I will remain that way.

UPDATE: I was scanned at my local hospital several months after this follow-up as instructed. My liver showed no abnormalities. WooHOO!

Exciting News! My beloved lab guru, who now works at Providence Cancer Institute in Oregon, has taken the "recipe" for my receptors with him and has tested them in a patient who is now no longer dying of pancreatic cancer! This is the kind of result that NIH has been hoping for! This patient has a matching HLA to mine, and evidently her tumors included the KRAS G12D mutation. Dr. Tran was able to engineer T-Cells to express the receptors that are native to my cells and infuse them into the patient.

Here's one article, but there are lots more if you're inclined to search.

There Is No "Nutshell" Version

I was asked to write an article about my cancer riot. It was to be shared with fellow patients on a cancer forum. Here is what I wrote:

In September 2013, I was a 47-year-old engineer-turned-programmer, wife, and homeschooling mom. My life was full and happy. I had no concern about cancer, so when I heard the doctor say, “I think you have cancer,” I could hardly believe that he was talking to me.

Just two short days later, I woke up from surgery with a sharp pain in my abdomen that brought the reality of my diagnosis screaming into focus. Eight inches of cancer-containing colon was cut out, along with a tumor-laden artery, part of my bladder, and twenty-one lymph nodes (pathology would later find seventeen of them to be cancerous). Though I hurt, I was thankful that 1) I woke up at all, and 2) the tumor was gone. I thought that the surgeon’s scalpel had brought my cancer history to an end that very day. Silly me.

FOLFOX chemotherapy was next as soon as I recovered from surgery, “Just to be sure,” they said, “that it’s all gone.”  Slowly, sickeningly, I slogged my way through six months of nauseating treatments, bone-crushingly painful supportive measures, and countless needle punctures. Though I grew sicker and wearier as the weeks progressed, after each treatment I told myself that I was one step closer to restored health. I would endure whatever it took to be able to continue raising my family with my husband.

One year after diagnosis my oncologist ordered routine scans to determine whether the treatments had been successful. Though a few small nodules in my lungs were noted, the PET scan was inconclusive. So, I underwent a needle biopsy. It was also inconclusive. Next, I had a lung wedge procedure which finally, sadly, proved unequivocally that colon cancer had metastasized to my lungs. My case was considered terminal.

FOLFIRI was offered as the next step, but I declined. I told my doctor that I wanted to look into clinical trials before doing any more chemotherapy. I had read about a patient who underwent immunotherapy at the NIH in 2014, and I was curious to know whether it would work for me.

Two days later, on my 49^th birthday, I was on the phone with a research nurse at the NIH asking about Dr. Rosenberg’s TIL trial. I filled out paperwork and requested medical records and scans to be sent to the NIH.

Exercising due diligence, I visited one of my state’s university oncology research clinics to find out what trials were offered there. Shockingly, not only did the clinic director inform me that he had no trials for which I qualified, he went further to actually discourage me from applying for a trial at the NIH! It seemed that bedside manner, if he ever had any, was not to be wasted on a terminal patient. At least, not this one.

Though my request to be screened for the TIL trial was twice denied, in February of 2015 they accepted me. On April 1, I underwent tumor harvest surgery at the NIH. The goal was for the surgeon to extract a large enough sample of tumor tissue to obtain a sufficient number of tumor-infiltrating lymphocytes (TIL) from it. I was sent home to recover while the scientists began to work on my cells. Weeks crawled by as I waited for word about whether or not a treatment could be developed from my cells.

In mid-June I got the long-awaited call. The immunotherapy fellow said they did indeed find enough cells, and they were excited to discover that some of the cells targeted a driver mutation. I had no idea what these words meant, but it sounded like extra-good news.

Back to the NIH I went. I underwent grueling “conditioning chemo” for seven days to quiet my immune system. Then, exactly three months after the lung harvest surgery, on July 1, 2015, 148 billion of my own mutation-targeting cells were infused into my body. Immediately after that, I was given the first of what would be five doses of IL-2. Two weeks later, my immune system recovered enough so that I could return home. My total stay was twenty-four days.

Each follow-up in the weeks to come showed more and more shrinkage to seven lung tumors. However, by nine months post-treatment it was clear that one of the seven tumors had changed. It was growing again.

Several options were discussed, but ultimately the decision was made to surgically remove the recalcitrant tumor. Due to its threatening location, the doctor opted to perform a lobectomy rather than attempt to remove just the tumor.

On April 7, 2016, I became the first person to undergo surgery post-TIL therapy. Remarkably, the scientists’ study of the tumors they examined post-surgery uncovered one of the mechanisms that is used by cancer cells to evade the immune system. Those results were published in the New England Journal of Medicine eight months later.

From the day of that surgery, I was declared NED—no evaluable disease. I maintain that status today. Trial NCT01174121 worked to eliminate six tumors from my lungs using my own cells, and the team at NIH saw me through to NED by performing surgery to eradicate the final one. I could not be more grateful!