I created this page so my friends and family can be updated on how I'm doing with my health. I'll try to keep it updated with important info; if I'm unable to post (the trial I'm in will have me feeling pretty sick for a couple of weeks, most likely), my former husband and dear friend, Frank Burzynski, will be in touch with the doctors and post any updates.
By way of background, I was first diagnosed with lung cancer back in 2017. I was in a lung cancer screening program and in 2016 a screening scan showed I had several lung nodules. Most lung nodules are not cancer, but they want to keep an eye on them for any changes. I was re-scanned a few months later and there were no changes, so I was told to come back for a scan in a year.
The NEXT scan, in 2017, showed one of the nodules had significantly grown and had a suspicious, spiculated appearance. My pulmonologist (at MD Anderson--Cooper Hospital in Camden) felt it was likely to be cancer and referred me to a thoracic surgeon. The upper left lobe of my lung was removed (lobectomy), using VATS (video-assisted thoracic surgery). The pathology study showed the cancer was adenocarcinoma (the most common type of lung cancer), with no affected lymph nodes, and staged as Ib (because it appeared the tumor may have invaded the pleura--my surgeon disagreed (he would have made it Stage Ia because he was sure there was no pleural invasion, but the pathologist won the argument). Because I was Stage Ib, it was almost a toss-up whether adjuvant chemo would do any good. Since there was a good chance it wouldn't make a difference, after discussing it with my oncologist I opted to forego the chemo and follow up with scans every six months.
I kept up with my scans, and as I approached the three-year anniversary, I was told that if this scan was clear, the scan scheduled could drop back to annual. Unfortunately, this last scan showed the cancer was back, and now in my right lung (doctors can't tell whether this is a spread/recurrence from the first cancer or a completely separate one). A PET-CT scan showed several lymph nodes were glowing, as well as a tiny spot on my sacrum (confirmed with MRI to be a 7 mm lesion). A brain MRI showed no metastasis there.
Because I was now Stage IV (but only because of the met to my sacrum), there were a couple of ways I could go in terms of treatment. The "curative" treatment for this stage would involve chemotherapy together with radiation. Every doctor I spoke with advised against that because of the location of the tumor--the radiation would most likely do significant damage to my esophagus. Alternatively, I could have four rounds of chemo/immunotherapy, involving Carboplatin, Alimta (pemetrexed) and Keytruda (pembrolizumab), followed by maintenance therapy of Alimta and Keytruda. At this point, I switched my treatment to U. Penn (Abramson Cancer Center at the Perelman Center for Advanced Medicine)--my oncologist there ordered comprehensive molecular testing, which showed that I had no mutations for which there was a targetable treatment. So chemo and immunotherapy were the standard treatments and we started with those.
Initially I had a terrific response to treatment. Scans showed the main tumor shrunk dramatically, the lymph nodes went back to normal size, and the met to the sacrum almost completely disappeared. I started on maintenance therapy in December 2020. My next scan, in February 2021, was somewhat equivocal--the radiologist felt the scan showed progression of the tumor; my oncologist wasn't so sure--he felt it was best to continue the maintenance therapy until the next scan.
The next scan, in April, left no doubt--the primary tumor had enlarged, as had several lymph nodes. The oncologist identified two clinical trials for which I'd be eligible at Penn. Meantime, I read on the Lungevity Forum (online lung cancer support group I've participated in since 2017) about a trial that sounded very intriguing, which was being run at MD Anderson--Cooper (where I had my surgery). This trial, sponsored by Iovance Biotherapeutics, involves TIL (tumor-infiltrating lymphocytes) therapy. Basically, they remove a small sample of the tumor, extract the lymphocytes that have already infiltrated the tumor (meaning they recognize the cancer as a foreign invader), and grow those lymphocytes till they are in the billions. The patient is given super-strong chemo for several days to deplete the immune system. Then the lab-generated lymphocytes are infused back into the patient, along with a biologic called IL-2 (interleukin 2), which kind of revs up the immune system. For the trial at Cooper, the immunodepletion and infusion will all happen in-patient to reduce the chance of infection or danger of severe side effects.
This treatment has mostly been tested in patients with metastatic melanoma, where it's been quite effective. Now it's being tested in other types of solid tumors (cervical cancer, NSCLC, and a few others). My doctor worked on research related to TIL therapy as a research fellow at NIH.
My surgeon at Cooper (the same wonderful doc who did my lobectomy) initially was unsure he could get a good sample of the tumor, since the main one was so deep in my right lung that he'd have to remove too much healthy lung tissue to get at it. But he had an idea--if a PET-CT scan showed there were more accessible cancerous lymph nodes, he could get the sample from those. So I got a new PET-CT scan, which revealed several accessible lymph nodes. The scan ALSO showed I had more cancerous lymph nodes than before, as well as a couple of new bone mets and a couple of spots on my liver (all places where lung cancer tends to go if it spreads). A new brain MRI shows no metastasis there. I had the surgery to remove the lymph node for the sample to send off to the lab about three weeks ago--that was relatively simple and painless.
So after a TON of testing, everything apparently is a "go" for this trial. Kristine, the research nurse who's been assisting my doctor (Dr. Hong, who's running the trial) tells me I'll probably be like a celebrity in there--everyone will want to come see how I'm doing. Right now the plan is for me to go into the hospital on June 9. I expect I'll be in there a couple of weeks, give or take. They've assured me they won't let me leave till my immune system is back to normal. I didn't have too many problems with the chemo I've had before, but this will be MUCH more intense. I fully expect to feel like crap for much of the time I'm in the hospital.
There's no guarantee this treatment will work. If it doesn't, there are other options for treatment, including other clinical trials. The upside here is that IF this works, this is a one-and-done treatment--no ongoing chemo afterward. And whether it works or not, I have the chance to help advance the science. My oncologist at Penn refers to this as "swinging for the fences"--he wanted to be sure I was OK with the intense chemo, but he agreed that if I was up for it I should go for it. Right now I'm feeling relatively healthy--no chronic cough, no serious shortness of breath--and it seems a lot more doable now than if I were sicker.
I'll add a couple of links below for anyone interested in learning more about this trial and the fascinating science and research behind it.
Just a few details my science-geek friends might find interesting:
Here's a link to the Clinical Trial description:
https://www.clinicaltrials.gov/ct2/show/NCT04614103. And here's a diagram that explains how the treatment for this trial works:
https://www.iovance.com/wp-content/uploads/AACR_2021_ePoster_IOV-LUN-202_TiP.pdf.
I've been poking around, trying to get some info on the actual experience of patients who have been through this treatment. Most are melanoma patients--that's where this was pioneered. Anyway, I found this article to be one of the most detailed:
https://www.curetoday.com/view/unleashing-the-power-within-using-tumorinfiltrating-lymphocyte-therapy. As I suspected, the treatment itself was pretty daunting (this patient was treated in 2016, in a trial at MD Anderson in Houston), but this patient has been cancer-free since. Before this treatment, her oncologist had run out of other options. Obviously, this is the result I'm shooting for.
Another article about a lung cancer patient, treated with TIL therapy more recently:
https://www.curetoday.com/view/cell-based-therapies-may-level-the-playing-field-in-non-small-cell-lung-cancer
And one more interesting recent (article--focusing on the scientific side, and specific to treating lung cancer with TIL therapy:
https://www.curetoday.com/view/the-future-of-adoptive-cellular-therapy-in-lung-cancer.
TIL therapy is one of a few types of treatment that fall into the category of "adoptive cell therapies"--some of which (such as CAR-T therapy) involves genetic engineering of the patient's immune cells. I believe those have mostly had success in blood cancers. If you're interested in some of the finer points and distinctions between the different kinds of treatments, here's a good article:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6447513/
Obviously, no one wants to be dealing with cancer. But I find the science to be really fascinating--and I'm happy to be able to contribute to the knowledge.
