Mets Day 173 - Another scan at Fox Chase

Today Jennifer and I drove up to Philadelphia for another day of scans at Fox Chase Cancer Center.  This is a continuation of the Dendreon clinical trial, where I was randomized into the control group.  I don't get the experimental drug, but by staying in the trial I can still assist by helping to establish a baseline.  Plus, the scans are more frequent than insurance would typically approve, I get real-time results, and I get to continue consulting with another great group of doctors.  And I get to enjoy a nice car ride with my beautiful wife. 

So after the nurse accessed my port, she drew 14 (!) vials of blood -- so much that the needle clotted up on the 11th vial, and she had to put in a second access line.  She left in the access line so it could be used for the iodine injection for the CT scan.  That's always an interesting feeling as the iodine is injected into your system -- you feel this warm feeling starting in your chest, then quickly spreading throughout your system in about 10 seconds, ending with the most intense heat in the bowels.  I guess that tells me where I have the most blood.  After I emerged from the spinning magnetic donut, I was released from my pre-scan fast, so Jennifer and I ate in the hospital cafeteria that one of the nurses said was the best of the three on site.  Nothing special -- the other two must be pretty bad, I thought.

While we waited for the scan to be read by the radiologist and the report prepared, we chatted with Michael, one of the novices from the Chicago friary that hosted us in May.  After three years in the seminary, this summer he decided to shift gears and returned back to his family home in the greater Philadelphia area.  Jennifer had reached out to  him last night, and he was happy to drive over and see us.  We had several good conversations with him during my convalescence, and he had written a very kind and inspirational letter after we returned home.  It was good to visit with him again.  He is a good man. 

Eventually, we met with Dr. Plimack and one of her fellows.  Dr. Plimack gave us the results of the blood work -- everything within normal ranges -- and the CT scan.  No bottom line of the scan was there was "no measurable disease."  Comparing today's scan to my earlier scans, there was nothing noted in the bones, lungs, liver, or other organs that was suggestive that a metastatic tumor had started to form.  This is very good news.

The radiologist did report seeing a 3.3 cm lymphocele in the right pelvic area.  A lymphocele is an abnormal collection of lymphatic fluid that can occur following surgery.  Lymphoceles apparently are commonly seen following surgical procedures like mine in which large amounts of lymphatic tissue are removed. Lymph systems have a low concentration of clotting factors and has no platelets. Lymphatic vessels are devoid of smooth muscle and therefore lack any constrictive properties.  It's something that my doctors will continue to monitor; lymphoceles frequently resolve on their own, but if it continues to grow, it can be drained.  

We also discussed the  challenges I have been facing with the neobladder, the stricture, and the sleep deprivation.  I told Dr. Plimack that I have noticed during my twice-daily catheterizations that it has been getting more difficult to thread the catheter past the stricture, suggesting that the stricture is growing back.  I said how Dr. Trinity B. at Hopkins had said that there was a possibility that it might come back, and that it might take several attempts to get the scar tissue under control.  Dr. Plimack said that I should continue to try to remedy that issue, but if it was continuing to so adversely impact my quality of life, I might want to consider having my neobladder changed to an ilial conduit, e.g., an external urine collection bag.  I told her that I had been marked for an ilial conduit prior to my surgery, and left the decision in Dr. Steinberg's hands, so I was ok with that if an ileal conduit what the best option.  As I understand it, it could take at least six to nine months to see if the neobladder and stricture issues could be resolved before doing another major surgery.  Dr. Plimack agreed that doing the more incremental steps first made sense, but if the stricture issues can't be resolved, then an IC might be the way to go. 

Dr. Plimack also suggested that I consider taking a longer leave of absence from work while I tried to remedy the issues with my neobladder.  She suggested that taking the pressure off having to try to balance work while suffering from such ongoing sleep deprivation might be the best way to go.  I realized that I had been thinking of the disability decision as a one-time, irreversible decision, and that I should instead look at it as an interim decision.  There is precedent for that in my firm -- several years ago, another partner was diagnosed with a different form of cancer, took an extended leave to deal with it, came back for a year or so, had a relapse, took more time off, and is now working on a flexible schedule.  

 We also talked about whether there were any second-line therapies that I should be considering.  I said how Drs. Schoenberg and Steinberg both had encouraged me to find a second-line therapy.  Dr. Plimack said that, unfortunately, she was not aware of anything that she could recommend.  We referenced the fact that bladder cancer was a tricky cancer, with lots of different genetic mutations (more than a dozen) in most cases.  I asked whether it made sense to have my cancer cell genome mapped, and she said not yet, because right now it would not provide any actionable information.  Later, if I had a solid tumor, then it could be mapped relatively quickly.  She said that the genetic mapping technology is racing forward so quickly that even 6 months or a year will make a big difference in what information can be gathered and used. 

Dr. Plimack said that, as long as the urothelial cancer is floating around on the microscopic level in my lymphatic system, but not presenting as a solid tumor, there is no known efficacious treatment:  no chemo, no radiation, no diet, or other alternative therapy, had been shown to have any beneficial effect on my form of cancer.  We talked about options such as diet (e.g., no animal protiens, high flax seed oil, crushed asparagus, etc.), hypothermia (heating up the cancer cells), and so on, and Dr. Plimack said that none of those had been proven to work.  We talked about how some Stage IV cancer patients would sometimes grab onto any idea when western medicine could not offer any treatment.  Dr. Plimack was careful not to dismiss anything, but to instead say that followers of evidence-based medicine could not recommend any of them.  

This conversation was consistent with my earlier conversations with Dr. Apolo of NIH, Dr. Aragon-Ching at GW, and Drs. Kim and Santa-Maria at Hopkins.  Maybe they're all captives of our country's medical education system, but I tend to agree with them.  

All in all, this was a useful day with good news and good information.  It was worth it to drive up to Philly and back in the rain.  My next set at Fox Chase scans are scheduled for Dec. 4.