My Story: PDT to the Rescue

By James W Gillett, PhD.

Briefly, I am a 72-yr old white male of Celtic/Gaelic stock. The chief known cause of death among males in our family now heart disease. Cancer is practically unknown and I am the first in 15,000+ records of my genealogist brother to be so diagnosed. A younger sister is now a BC survivor. We have an average life span is 79, a little better than the mean. I have lived the last two decades in bucolic central New York and the prior two decades in the equally bucolic heart of Oregon's Willamette Valley. My first 21 yrs were in urban parts of the Kaw Valley (Kansas City & Lawrence, KS), followed by 9 yrs in Berkeley. I have been primarily employed as a chemist and environmental scientist working in labs on toxic chemicals (which probably is irrelevant) but I smoked heavily for over 40 yrs.

My first hospitalization for severe GERD was in 1956, but only OTC preparations were used for over 40 yrs. The real health problem has been familial hypercholesterolemia. My father ('89) and mother ('93) had died from heart disease; in addition, my mother, after two sets of coronary bypasses, had Barrett's esophagus (BE), which she passed off as unremarkable for at least 7 yrs. My grandparents had all died of heart disease and stroke (complicated by a pulmonary disorder for Dad's father). In '95 I had had a femoral-femoral shunt to bypass a largely blocked artery and restore full circulation to my kidneys and legs, and diet, exercise, and medications were barely lowering my cholesterol. I quit smoking finally in '91, and my weight shot up from 165 to 215. My cholesterol had to be dragged screaming and kicking down from 476 to 281. Nevertheless, angina got me a heart catheterization and an emergency quad bypass in Feb. '99. To complicate matters, Mary my wife of 30+ yrs has MS.

I was diagnosed w/ low grade dysplasia and BE in '95, and then high grade dysplasia (HGD) in May '99. I was told by my GI dr that I had 6 mo to 2 yrs, although I was his first HGD patient. No local surgeon had any experience with performing an esophagectomy, but my GI dr believed that surgery was ruled out by my bypass surgery and generally poor vascular health. So I started looking around the web, stumbled onto Cathy's EC Café fairly quickly and thereby opened up the wonderful box of the ECG listserv. I knew that there were experimental procedures using lasers for some cancers and that these might be especially useful at an early stage of diagnosis. HGD is also called carcinoma-in-situ (CIS) or stage 0 EC. On the web I learned about photodynamoic therapy (PDT), but it took a lot of digging to get further. My GI dr had heard papers about it at a meeting, but his senior partner was reluctant to the point of opposition to even making a referral. The elder dr clung to the belief that radical surgery was the one slim chance anyone had, even if it killed them. Nevertheless, in order to get a second opinion, my GI dr set up an appointment with a surgical oncologist employing PDT down at Memorial Sloan Kettering Cancer Center (MSKCC) in NYC. After months of arguing with my HMO (which at first denied payment for a second opinion, because no one was going to do anything) and a 5-hr bus ride, I managed to get a 2-hr interview that led nowhere. They would not use PDT for EC0, only stage 1 or 4 in the protocols they were using and then only with surgery as back-up, which they agreed was out for me. However, 6 mo later the NY state law had changed and I was able to go to Upstate Medical Center in Syracuse for an EUS (endoscopic ultrasound), which verified that I still had no tumor mass and put me back in the "wait and see" mode. Upstate did not do PDT either, but the GI dr there thought that Roswell Park Cancer Institute (RPCI) in Buffalo did, as was confirmed by a more careful search via the web (different search engines find different data).

Amazingly, matters started to fall into place; the Buffalo branch of my HMO approved everything immediately. RPCI had a hotel connected by a tunnel immediately on site as well as free off-campus housing in a couple of converted mansions. The highly competent and well-organized staff facilitated almost everything, although there were innumerable problems in setting up all the tests (CT scan, Ba swallow and chest x-rays, EKGs and stress cardiograms, and blood work) performed in Ithaca and then getting the results up to them. At first the interview went about like it had at MSKCC, but Dr. Hector Nava has been one of the pioneers with PDT and was aggressively employing it for a number of cancers. Moreover, their research team had some new, extremely promising dyes for which Phase I trials were just starting. To cap everything off, we were contacted via the EC listserv by Charles and Helen -- he had just had PDT by Nava and they lived nearby in Ithaca! All but holding our hands, they offered us a host of assurances, protective clothing, and thorough guidance at each step. Charles was a patient of that elder partner of my GI dr. and between the two of us (and the listserv) we have literally been able to educate them about RPCI and PDT. Recently they just referred a third patient to RPCI, but sadly a number of others have died of EC here in Ithaca.

What is PDT? They inject a dye (by IV) which is selectively taken up by cancer cells. After 48 hrs, the tissue is illuminated during endoscopy by a specific laser tuned to excite the dye, thereby killing those cells which took up the dye to the greatest extent (cancer and pre-cancer cells). The dye is gradually broken down and excreted and, if the patient stays out of the direct sunlight, very few complications arise. The tissue usually heals quickly (Charles, who receive photofrin, had to have a series of dilations), because it is not burned as when thermal laser or chemical (caustic) ablation is used. In PDT the tissue is killed by the dye catalyzing oxidative damage to critical metabolic elements (phototoxicity). The dyes are typically related to breakdown products of the iron compound in red blood cells (heme or porphyrin) but designed to be less toxic. Dyes such as the FDA-approved "photofrin" or "ALA" can be troublesome in that you need to stay out of strong light for 4-6 weeks and avoid full sunlight for 3 mo. At the time I was the 8th person to receive photochlor, also called "HPPH", which seemed from the information in the consent document to be a highly improved agent. The toxicity data were quite reassuring regarding potential drug interactions. Best of all, HPPH cleared the system completely within days. Although I was advised to take the same precautions Charles did, they had already established that I was basically HPPH-free when I left the hospital 3 days after tx. (Dr. Nava also prescribed aloe vera solution for 2 wks after surgery, to speed excretion of HPPH, aid healing, improve bowel action, and reduce impact of whatever light I might accidentally get.) Within 10 days I returned to a normal diet and work garb, but needed to stay out of direct, strong sunlight (easy to do in cloudy Ithaca) for 6 wks. After a series of follow-up endoscopies, CT scans and Ba swallows, I have been NED for over 7 mo. The BE cells were removed along with the CIS, and normal squamous cells have begun to appear in their place.

The PDT took several months to set up, and I had changed medications in the middle of running up to RPCI. At one point CIS could not be detected, which Mary believes was caused by the simultaneous switch from Relafen to Vioxx (to reduce chances of upper GI bleeding while still working on my bone spurs and bursitis) and from Prilosec to Protonix as a PPI (because I was beginning to have severe GERD again). However, CIS returned and I was accepted into the protocol in May 2001, almost 18 mo past dx.

There was one highly unusual event. When they were infusing HPPH through the IV on my left hand, the needle (hidden by tape) came out of the vein and HPPH infiltrated my only good hand (the other was affected by polio in '42). The nurse and resident treated it as if it were a standard blown IV and wrapped it in warm towels to reduce the extremely painful swelling. When that didn't work, they switched to a heating pad. By morning I was in severe pain, far worse than anything else in the whole procedure. I was only the second person to whom such an accident had happened and the only one receiving HPPH. The previous one was over 10 yrs ago and only Dr. Nava was around from that time, and it wasn't his patient. The staff learned that they needed to avoid heat as well as light, as the former seem to activate the dye in some manner. The hand remained stiff for months, yet usable and now is back to normal. Dr. Nava's recommended physical therapy to restore flexibility has helped.

Dr. Nava's group has never lost a patient due to any of the steps of PDT. They have never perforated the esophagus, their major fear and one about which patients are duly warned, nor lost a patient during an endoscopy. RPCI has a unit devoted to gastrointestinal cancers and a floor for treatment and surgery, yet even there EC is relatively uncommon. They have now done over 30 patients with HPPH with an extraordinarily high degree of success, although we all must be appropriately cautious in such a short term evaluation. Only one person failed to reach NED by the first follow-up endoscopy and had to be re-treated. With photofrin which Charles took, about 50% or so have a second treatment months later. I believe that contributed to Charles' need for dilations, as the healing is more difficult the second time. [NB: Although Charles was NED and recovered fully from EC, he died last year from unrelated multiple myoloma].

Subsequent endoscopies, CT scans and barium swallows have all been negative for BE as well as EC. A suprarenal abdominal aortic aneurysm (AAA) was diagnosed by the CT scan for my PDT in 2001, and that has now been repaired. I developed type II diabetes, and that permitted a serious hand infection to spread up my arm. Surgical intervention and insulin and antibiotic therapy plus extensive physical therapy were all necessary and successful. Looking back, PDT has been the least rigorous and dramatic treatment over the past 10 yrs, but without it I have no doubt that I would have been another SEER statistic. On that basis I strongly urge others to at least consider participation in experimental procedures such as clinical trials in a facility with abundant expertise. RPCI was the first comprehensive cancer center and protogès of Drs. Nava and Dougherty now do the bulk of PDT treatments elsewhere in the country. Later I had an opportunity to serve as the Patient Representative on the FDA Drug Review Panel evaluation photofrin for treatment of HGD and BE. The data had taken 30 yrs to amass and the particular trials last 8 yrs to accumulate data on only 8,000+ patients. PDT is now approved by the FDA for treatment of BE with HGD and for palliative treatment of stage IV EC, in order to control surficial growth.

Photo: Jim preparing a salmon fillet at the 2002 "EC Picnic" at the DeLury's in Philladelphia. It was during the weekend of this event that Jim and others founded the Esophageal Cancer Awareness Association (ECAA).

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