Mets Day 910: Discharge and game plan

This morning I had a V/Q study, which is a type of lung ventilation/perfusion scan, to measure my lung capacity. It showed that I was at about 70% of expected perfusion capacity, which confirms that my PE is impacting the ability of my lungs to oxygenate my blood. After I'm on the blood thinner medication for 6-8 weeks, I'll have a follow-up V/Q scan to make sure that the issues relating to my PE have been addressed.

I then was instructed on how to inject myself with Lovenox. Last night, Jennifer received instruction and successfully injected me. This morning I successfully showed that I could shoot myself, so to speak. I was told that I would be discharged later today with 56 syringes, sufficient for four weeks of twice daily injections. I'll be reassessed at that time to determine wither I can drop to a once daily injection. Perhaps eventually I might be able to switch to an oral blood thinner, such as rivaroxaban (Xarelto), although I was warned that Xarelto has only been recently approved for DVT and PE, and there is limited data on using it with mets cancer patients. In addition, Xarelto has not been as well-studied for drug interactions, so if I ever enter a clinical trial and was on Xeralto, I'd probably have to go back onto Lovenox. Plus, if ever I was badly bleeding and needed to reverse the effects of the blood thinner I was taking, Lovenox can be reversed, while Xeralto cannot, and would have to metabolize out. The question is, how much of a pain it be to inject myself daily or twice daily, both in terms of the hassle of doing it, and the ongoing bruising and tenderness in the injection sites, versus the possible risks from Xeralto?  Eh, I'll cross that bridge later.

I also had a consult with NIH's hematology department - the fellow showed up 90 minutes after the scheduled time, and the attending doctor wandered by a half hours thereafter. Oh that I could bill doctors my regular lawyer billing rate for all the time that I've spent waiting for doctors. Anyway, I was questioned in depth by the fellow on possible symptoms, causes, and family history of DVT and PE. Aside from my brother having had DVT and PE last year for unexplained reasons, there is no immediate family history to my knowledge. Hematology will have my blood run through various tests and possibly a broader genetic sequencing for further insight, but the fellow guessed that my PE is a simple case of metastatic cancer and chemo causing my blood to turn into sludge. Interestingly, the attending said that there was limited evidence suggesting the Lovenox might inhibit the growth of certain types of malignancies, so he suggested that I stay on that instead of shifting to Xeralto. Note to self: do some follow-up research on that.

I also met again with Drs. Wood and Apolo. They are going to coordinate my follow-up care with Dr. Aragon-Ching, who will see me next Monday.  I will come back to visit with Dr. Apolo next Tuesday, to further explore whether any clinical trials are currently available to me, and if so, whether now is an appropriate time to do one. Dr. Apolo said that, although my supraclavicular nodes are not increasing in size, Monday's CT scan was able to detect that I have a cluster of supraclavicular nodes that are larger than normal: two are about 1 cm across on the short axis, and others are smaller than 1 cm, but still larger normal. Dr. Wood compared those nodes to a cluster of Hershey's kisses that have started to melt. They were still distinct, but the borders were beginning to become less distinct. While Dr. Wood's HER2 clinical trial required a single tumor at least 2 cm in size, Dr. Apolo said that, for the PD-L1 trials that she had in mind, it might be possible to consider the aggregate of those cluster of nodes to meet the minimum size. She said that later today she was going to sit down with the radiologist who initially read Monday's CT scan, and do a closer evaluation of my CT scan. We'll discuss next week her thoughts on possible clinical trials.

I'm not of the mind that I should jump into any clinical trial that might be open to me. For example, Dr. Wood's Phase 1 HER2 study seems too unproven for me at this point. If I had advanced tumors in my liver or lungs, and there were no other therapies available to me, then I might consider it. But I currently have a relatively light metastatic cancer burden, and know that, in all likelihood, my cancer is likely to progress in time. Each treatment is like a single bullet: I'll likely be able to use each therapy only once. There is no expectation that any therapy will cure me, since there is no known cure for metastatic bladder cancer, and none on the immediate horizon. Instead, each of these experimental therapies are intended to slow the growth of cancer, and prolong my life. The question for any future is therapy will be a balance of my current condition against the wisdom of waiting; the likelihood that the therapy would work on my mets BC; and the potential side effects. I'll be making that decision after in-depth consultations with my doctors.

I've essentially abandoned the idea of having my metastatic nodes removed. I questioned both Drs. Wood and Apolo about that idea, and they firmly rejected it, for three reasons: First, there is no evidence that a lymphanadectomy would help me. The studies on lymphanadectomies on patients with metastatic cancer differentiate between those nodes located in the abdomen (where there is some evidence that removal of additional nodes can help, which is why I had 61 nodes removed at the time of my radical cystectomy), and nodes in the chest, where there is virtually no evidence of any beneficial effect. Second, a lymphanadectomy would not be curative, or even therapeutic, because my bladder cancer is systemic throughout my lymph node system, and is not confined to my enlarged nodes. As Dr. Apolo said, "you have a systemic disease. It needs a systemic treatment." Third, the risks to having a lymphanadectomy of those supraclavicular nodes are significant, especially nerve damage to the shoulder, left arm, or even the heart, as well as potential damage to the veins and arteries lacing that region. On balance, the risks of a lymphanadectomy outweigh the benefits.