There was good news and not-so-good news from yesterday's long day at the KU Cancer Center.
The first appointment was scheduled at 8 a.m., so our alarm went off at 5:30. My sleep habits have been unpredictable lately, so 5:30 was "normal" for me; for Mohamed it was way too early. I could drink water to swallow all my morning pills, but there was no coffee for me. There was, however, time for my morning injection in the stomach--600 or so of those since we started. We left at 6:30 and drove into Kansas City mostly in the dark.
I got in promptly at 8 for my blood work. The woman who drew the blood was extremely gregarious; she called me "Buddy" at least a dozen times and laughed heartily at my feeble early morning jokes. She wasn't, however, the most competent person I've had. I have prominent veins, and usually the personnel are happy to have an easy shot. She had trouble getting the needle in, and when she finally was able to draw blood, she kept insisting that I watch so that I could see that the blood wasn't flowing smoothly. I don't mind shots or drawing blood, but I don't usually watch as the three vials are filled. This time I didn't seem to have a choice. The blood drawn, she was supposed to leave the IV in since I'd need it for the CT scans. But by now, she wasn't able to get it to flush in my right arm, so she put the IV port in the left arm. Unfortunately, the one she put in was too small, so the CT techs had to take it out and find a place on the right arm. Luckily, after lots of discussion and exploration of the back of my hand, they were more successful in finding a spot in the original vein, and, after my having drunk two large glasses of barium-laced water and wrapped myself in a warm blanket, the CT scans went smoothly.
Then there was a long break. Not having eaten in over 12 hours, I scarfed down a sandwich, some OJ, and some coffee in the cafeteria, and an old friend from my early days at OU, who has lived in KC since 1968 but whom I don't see very often, came to the cafeteria for a 90-minute chat. Then it was back to have the consultation with Dr. Vanveldhuizen. While we waited, a Fellow at the hospital came in. Since the Med Center is a teaching hospital, visits by residents often happen. Sometimes, when the intern (I'm not sure of the accuracy of these terms) is clearly not acquainted with my case history and asks perfunctory questions, I'm irritated by these visits, but Dr. (?) Williams was quite informed, and we had a thorough discussion with him and then with him and Dr. Van.
The good news is that the Votrient continues to be effective against the secondary tumors in my bones and other organs. They continue not to grow. The bad news, however, is that the size of the primary tumor in my left kidney has increased by about 20%. At the last visit, it had grown only slightly; this time, the growth was more significant. So the rest of the consultation was spent talking about my options, which seem to be five:
1) Continue with the Votrient and a wait-and-see attitude. Pros: the Votrient seems to work well on other tumors, especially those in the bones; my body appears to have become relatively well acclimated to the drug. In the last three months, I haven't had to take a break from the treatment. Cons: the Votrient may have lost some or all of its efficacy against the kidney tumor. As I've said, the average length of time that patients in the clincial trials of Vortrient took the chemo was 7.4 months. I've taken it for more than double that time.
2) Switch to another targeted chemotherapy drug, like Sutent. Pros: Sutent is the major alternative to Votrient for kidney cancer and has proven to be effective in many cases. If the Votrient has lost its efficacy, perhaps a new line of attack will work. Cons: like Votrient, Sutent hasn't proven to have long-term (i.e., more than a year) effects. Sutent will have its own side effects, and my body will have to adjust to a new set of conditions.
3) Continue with Votrient but enroll in an experimental drug program to complement the Votrient. Pros: the combination may prove to have stronger effects; I could be helping develop a drug that will be beneficial in the future to people with kidney cancer. Cons: There's a 50% chance that I would be in the control group and be getting a placebo; even if I'm not, there are the same cons as with simply switching drugs; and there would be an increased number of tests and consultations, which, if they have to be done in KC, would be somewhat onerous.
4) Ablation (burning) of the tumor. Pro: less invasive than surgery. Con: a shorter window of time to make a decision, since the smaller the tumor, the more effective ablation is.
5) Surgery to remove the tumor. Obvious pro: the primary cancer is removed. Con: surgery has its own risks, and there would be a recovery period.
What Dr. Van made clear is that neither of the last two options would prolong my life. If they would, one or the other would be an obvious choice. The most they could do, unfortunately, is to relieve possible discomfort or symptoms like blood in my urine as the tumors that remain do what tumors do.
Dr. Van wants to consult with the surgeon who would do the operation, Dr. Holzbeierlein (long names seem to be the norm for my doctors), before we make any decisions. Dr. Holz, as I gather he's called at the Center, agreed to squeeze me in yesterday after I had my $13,200 shot. So we went back to the consultation rooms, but after waiting 30 minutes I was so exhaused (usually I'm midway through my second nap of the day) and the waiting room was so stuffy that I simply couldn't stay awake, so we decided to wait until Dr. Holzbeierlein had had time to review my charts and then to talk to him and Dr. Vanveldhuizen.
The fresh air seemed to revitalize me, and I stayed awake for the whole ride home, but then I crashed. Now it's time for Mohamed and me, in consultation with Dr. Van and Dr. Holz, to make a decision about the next step. I'll keep you informed.
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