We arrived at 7:30 am to practice for my cytoscopy by Dr. Agarwal. We ended up waiting for more than two hours earlier than I was once called into the preop. The anesthesiologist twice tried to access my port, nevertheless couldn't get a return of blood flow from my port, so I ended up getting an IV on the again of my hand – my least favourite location, since it invariably leaves a nice bruise and is tender for in line with week or so. Dr. Agarwal explained how he intended to completely check my neobladder and ureters for possible reasons for my bloody urine. The anesthesiologist gave me a sedative, and within 10 seconds I was once out.
About ninety minutes later, I came to in the recovery room. Kirsten was once sitting next to me with a a bemused expression. Dr. Agarwal was once additionally there, patiently answering my questions. Kirsten later told me that I had been asking a similar inquiries to him, the anesthesiologist, and the nurses: would they get my daughter who was once in the waiting room (Kirsten has been sitting beside me for a long time, nevertheless that fact had not registered with me); I was once just exotic driving domicile (certain you are, Mr. Brothers); and tell me again about the contrast media that you only used. For what it's really worth, I have no recollection of asking those questions, and absolutely don't recall the answers.
Once I stopped repeating my questions, they found that I finally had emerged from the anesthesia. Dr. Agarwal said that every unmarried thing seemed exotic in the neobladder and ureters – there was once no facts of any cancer, or anything bad. There was once one house in my neobladder that seemed just a little irritated and raw, nonetheless it was once not anything to worry about. Kirsten showed me the images of my neobladder that Dr. Agarwal took – they appeared like two photographs of Mars. Good news, then.
After I dressed, I went to get lab work earlier of my clinic appointment with Dr. Apolo. Even though the surgical procedure nurse had left in the IV in my right hand, the phlebotomist declined to apply it for my blood draw, as an alternative gaining access to my left arm. Something about not wanting any heparin in the blood samples. A minor irritant, nevertheless still. I was once additionally directed to supply a urine sample, nevertheless since I had not had anything to drink for 15 hours, and since my neoladder had been totally filled, them emptied, all of the process through the cystoscopy, once i tried to void, all that came out were drops of blood. That was once not a comforting sight.
The phlebotomist told me to get a lot to drink and supply a sample once i may. Kirsten and I walked down to the NIH cafeteria, the place I sucked down about three liters of Diet Coke. After that, producing a sample was once judicious-peasy, in spite of the fact that it was once still a chew bloody. (The fellow who did my screening earlier than I met with Dr. Apolo commented on how the urinalysis showed loads of blood, so she correctly guessed that I had provided it after the cystoscopy.)
We ended up waiting ninety minutes past the appointment time from Dr. Apolo. She apologized for working late; it was once contemplating that yesterday was once 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 whole short axis size of 2.four cm. Dr. Apolo had told me over the telephone on January 12 that she and the radiologist had tried to distinguish the original nodes from every unmarried and every unmarried varied, nonetheless it turned into a guessing game without a valuable objective. So I have blasted process past the 1.5 cm threshold for clinical trials.
We then discussed in element Dr. Apolo's current clinical trial of cabozantinib for evolved 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 once to participate on this trial, I likely would must have an alternative needle biopsy. I'd additionally likely have to stop taking Xarelto, and go again on one of the injectable blood thinners, comparable to 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 again onto Xarelto.
We discussed the abilties side effects; just highly among the more unusual of the drug on this trial (called XL184) consist of dermis sloughing off the feet and palms; as a result, she said that patients aren't immerse their feet in hot water (including hot tubs), and that showers would most probably be lukewarm and short. The XL184 drug additionally in general causes fatigue in about 80% of patients, loss of appetite (about 50%) and trade of flavor (about 30%). There were a long list of varied, less consistent, side effects. Oh, and XL184 additionally tended to turn hair white.
I requested Dr. Apolo to evaluate the cabozantinib trial to the immunotherapy trials for MPDL-3280a. To her firstclass credit, Dr. Apolo didn't marketing campaign for her trial. She as an alternative said that it was once likely that I would do either trials, and that she had no data on which one I must do first. There simply is no side-by-side data to validly evaluate them to every unmarried and every unmarried varied. She proposed that she contact Dr. Nancy Dawson, one of the lead researchers at Georgetown for the MPDL3280a trial, so I may study that choice. (The same trial additionally is being offered at Fairfax Hospital, which is about a similar distance from me.)
For now, I haven't got to make an immediate decision. I'm going to consult with Dr. Aragon-Ching and get her input, and additionally will meet with one or more of the doctors working the MPDL3280a trial. Because of all of the side effects of the cabozantinib, I am leaning a ways from doing that one. But it's nice to have offerings.