After Brian's whipple he had regular 3 month CT scans. His CA 19-9 never went down to normal range (it was 98 six weeks after surgery) and slowly started to rise, at first it rose by 100 a month then it slowed down, peaked at 493 and eventually began to fall again. In March of 2008 (15 months after his whipple) his CA 19-9 was down to 293 with no chemo, his last drop was 157 points. We had his three month scan and found that there was a lung nodule that had grown from 5 mm to 8 mm (we didn't even know there was a lung nodule until then!) Brian was referred to a thoracic surgeon, who was willing to remove the nodule, but first she ordered a PET/CT (which Brian had never had done) and we found that there were three lymph nodes under his left clavicle that were suspicious and later were confirmed by biopsy to be PC. There was no cancer seen any where else, just the spot in his lung (another lymph node) and the spots in his neck.
We chose to not jump into chemo but to initially treat it with nutrition (a very personal choice). We knew that chemo would be something he would need to do, but we chose to try to build up his immune system first. This turned out to be a choice that probably saved his life. Not because of the nutrition, but because on his next scan in late April 2008 a brain tumor was found. The previous scan had not gone up high enough and had not caught it. Had Brian chosen to start chemo right away the brain tumor would have gone unnoticed for a longer period of time and may have been inoperable by the time we found it. Chemo does not pass the blood-brain barrier so it would have had no effect on the brain tumor.
On May 5, 2008 Brian had surgery to have the brain tumor removed. It was about a cm and was confirmed to be PC. This surgery was followed by 3 weeks of radiation along with a study drug (a PARP inhibitor). He finished radiation in early June, his hair STILL hasn't grown back, he has a 'reverse' mohawk, hair on the sides but not in the middle.
On June 30, 2008 he finally started chemo, GTX again. In early April we had been to see Dr. Fine at Columbia, and he recommended adding a drug called Nexavar to the GTX, but the hospital we are at said no and we chose not to push it at that point. The lung nodule had not changed since it was discovered in March, but the lymph nodes in the neck had increased in size and number, I think there were 5 now. We asked about surgery, but were told that because of their location it was not possible.
In September, Brian's first scan after starting the GTX showed that the lymph node in the lung was gone. The Dr. said that if you squinted you might THINK you see something, but you had to try real hard. The lymph nodes in the neck were greatly reduced but still there. More GTX, 3 more cycles and he needed Nupogen after the first dose of Gemzar and Taxotere every time because his WBC tanked. His CA 19-9 was down to 26, this was the first time it had ever been in normal ranges.
He had another scan in November and the lymph nodes that we had been attacking seemed to be gone, BUT, there was a brand new lymph node that showed up in his neck. This time our Dr. referred us to a neck surgeon. He felt that if the cancer could be removed without causing Brian any disfigurement or permanent problems that it would be a better choice than changing chemos. His CA 19-9 was 37.
We saw the surgeon and he said that surgery would be possible, so on December 2, 2008, Brian had surgery on his neck to remove the cancerous lymph nodes. The surgeon removed 23 lymph nodes, out of which 2 were cancerous. The one we knew about and one other one (he had said after the surgery that he thought there were three cancerous nodes).
In February 2009 Brian had 2 follow up scans, an MRI for the brain which was clear and a PET/CT which showed that a lymph node under the left clavicle was starting to be active again. There was only one, and it was small so the oncologist recommended no treatment at that time and a follow up scan in 2 months. This was echoed by the neck surgeon, who said that removing it would not be a good choice, his exact words were 'I could take it out, but you wouldn't thank me'. Apparently it is against some pretty important nerves, ones that control silly things like breathing and speech, so messing around in that area is not advisable. We discussed radiation to the neck area, but again that idea was not a good one for a couple of different reasons. Really, they want to save it for later if they need it. His CA 19-9 was up to 54.
So, as of right now Brian is not on any conventional treatment. He does still take glyconutrients, so at least we feel like we are doing something.
Brian was first diagnosed with his cancer in February 2006 and he was diagnosed with metastatic disease in March of 2008, He has survived PC for over 3 years now. If you were to see him today you would never even know that he has cancer. He is active and works. He spends time with our kids. He gets tired easily and still has occasional pain, but he is living. He is without a doubt my hero and I will love him forever.
Hope. Believe. Dream.