Mets day 1013: Cytoscopy and clinical trial options

Today was a long day at NIH. The nurses at NIH repeatedly had insisted that I needed to have someone accompany me, but today was the first day of classes at George Mason University, which meant that both Jennifer (for her MSW classes) and Spencer (for his biology undergrad degree) were otherwise booked. Fortunately, Kirsten was available, having come home from CNU.

We arrived at 7:30 am to prepare for my cytoscopy by Dr. Agarwal. We ended up waiting for more than two hours before I was called into the preop. The anesthesiologist twice tried to access my port, but could not get a return of blood flow from my port, so I ended up getting an IV on the back of my hand - my least favorite location, since it always leaves a nice bruise and is tender for a week or so. Dr. Agarwal explained how he intended to thoroughly check out my neobladder and ureters for possible reasons for my bloody urine. The anesthesiologist gave me a sedative, and within 10 seconds I was out.

About 90 minutes later, I came to in the recovery room. Kirsten was sitting next to me with a a bemused expression. Dr. Agarwal was also there, patiently answering my questions. Kirsten later told me that I had been asking the same questions to him, the anesthesiologist, and the nurses: would they get my daughter who was in the waiting room (Kirsten has been sitting beside me for a while, but that fact had not registered with me); I was just fine driving home (sure you are, Mr. Brothers); and tell me again about the contrast media that you used. For what it's worth, I have no recollection of asking those questions, and certainly do not recall the answers.

Once I stopped repeating my questions, they realized that I finally had emerged from the anesthesia. Dr. Agarwal said that everything looked fine in the neobladder and ureters - there was no evidence of any cancer, or anything else bad. There was one area in my neobladder that looked a little irritated and raw, but it was nothing to worry about. Kirsten showed me the pictures of my neobladder that Dr. Agarwal took - they looked like two photographs of Mars. Good news, then.

After I dressed, I went to get lab work in advance of my clinic appointment with Dr. Apolo. Even though the surgery nurse had left in the IV in my right hand, the phlebotomist declined to use it for my blood draw, instead accessing my left arm. Something about not wanting any heparin in the blood samples. A minor irritant, but still. I was also directed to provide a urine sample, but since I had not had anything to drink for 15 hours, and because my neoladder had been completely filled, them emptied, during the cystoscopy, when I tried to void, all that came out were drops of blood. That was not a comforting sight.

The phlebotomist told me to get a lot to drink and provide a sample when I could. Kirsten and I walked down to the NIH cafeteria, where I sucked down about three liters of Diet Coke. After that, producing a sample was easy-peasy, although it was still a bit bloody. (The fellow who did my screening before I met with Dr. Apolo commented on how the urinalysis showed a lot of blood, so she correctly guessed that I had provided it after the cystoscopy.)

We ended up waiting 90 minutes past the appointment time from Dr. Apolo. She apologized for running late; it was because yesterday was a federal holiday, so they were squeezing two clinic days into one. We discussed the results of my January 8 CT scan, which showed that three of my supraclavicular lymph nodes had essentially merged together, resulting in a total short axis size of 2.4 cm. Dr. Apolo had told me over the phone on January 12 that she and the radiologist had tried to distinguish the original nodes from each other, but it turned into a guessing game with no useful purpose. So I have blasted way past the 1.5 cm threshold for clinical trials.

We then discussed in detail Dr. Apolo's current clinical trial of cabozantinib for advanced urothelial cancer. Preliminary data from patients already in the trial were publicized at ASCO's 2014 meeting; Dr. Apolo said that the most current results showed that about 20% of patients were seeing a decrease in tumor size, and about 30% were stable. If I was to participate in this trial, I likely would need to have another needle biopsy. I'd also likely have to stop taking Xarelto, and go back on one of the injectable blood thinners, such as Lovenox or fondaparinux. If the reaction kicked in again, they would have to get written permission from the maker of the drug to put me back onto Xarelto.

We discussed the potential side effects; some of the more unusual of the drug in this trial (called XL184) include skin sloughing off the feet and palms; as a result, she said that patients should not immerse their feet in hot water (including hot tubs), and that showers should be lukewarm and short. The XL184 drug also frequently causes fatigue in about 80% of patients, loss of appetite (about 50%) and change of taste (about 30%). There were a long list of other, less common, side effects. Oh, and XL184 also tended to turn hair white.

I asked Dr. Apolo to compare the cabozantinib trial to the immunotherapy trials for MPDL-3280a. To her great credit, Dr. Apolo did not campaign for her trial. She instead said that it was likely that I would do both trials, and that she had no data on which one I should do first. There simply is no side-by-side data to validly compare them to each other. She proposed that she contact Dr. Nancy Dawson, one of the lead researchers at Georgetown for the MPDL3280a trial, so I could examine that option. (The same trial is also being offered at Fairfax Hospital, which is about the same distance from me.)

For now, I don't have to make an immediate decision. I'm going to talk to Dr. Aragon-Ching and get her input, and also will meet with one or more of the doctors running the MPDL3280a trial. Because of all of the side effects of the cabozantinib, I am leaning away from doing that one. But it's nice to have choices.