Dave and I went to see Dr. Patel on 10/19 and Dr. Lily on 11/24. The appointment with Dr. Patel was fairly unremarkable. Most of Dave’s vitals were stable, with the exception of his weight, which was down to 192#; Dave attributes that to the greater attention he’s been paying to both his diet and his exercise program. He was also mildly anemic, but not alarmingly so, and as is typical with him, probably because of his blood pressure meds, his potassium was low. Dr. Patel suggested that it might be time for Dave to talk to his primary doctor (Moen?) about reducing his blood pressure meds, dosage for which is calibrated to weight.
The main thing we talked about was Dave’s intake with his pulmonologist’s nurse. He’s scheduled to see Dr. Jeff Carey on 11/24 for a chest CT and pulmonary function test, primarily to assess his sarcoidosis.
Dave switched back to Lupron to treat his prostate, but because only the smaller dosage is available right now, they’ve had to up the frequency. I believe he got it on 8/17, then again around 11/3, but I believe the next dose is due early in December.
We also spoke about the port, which barring a need to keep it for prostate treatment, Dave is willing to remove once his visits to the hospital drop to every eight weeks.
“Ather” (sounds like “Arthur”), Dr. Lily’s PA, checked us in on 11/10. Dave’s vitals, including his weight, were stable that day, though he claimed to have greater energy, which he ascribes to four miles of walking per day. Libido was still flat, as expected.
Dr. Lily gave Dave a DRE and found no evidence of disease. He was, however, skeptical of the proposition that RCHOP could have cured the prostate cancer, instead crediting Lupron with shrinking Dave’s prostate. (Dave later confirmed that his prostate symptoms abated after he started RCHOP but before he started on Lupron.) We asked if more scans or a biopsy would help confirm the state of the disease. Lily’s answer was basically “no.”
I had a similar discussion with my oncologist in 2010 when after three CHOP cycles, my cancer was undetectable. He even used the word “remission.” Nonetheless, I still needed another five months of chemo in the hospital to ensure the destruction of every last cancer cell. Once you’ve detected cancer in an advanced stage, you must treat it with the exact right protocol, even if it becomes undetectable before you’re done, because if you don’t, and it comes back, it will often be resistant to earlier measures, and then treatment becomes far more difficult. RCHOP is not designed for solid tumors. No matter Dave’s subjective sense of the symptoms, no matter the negative DRE, no matter even a negative scan or biopsy, you can be certain the cancer is still there, and probably has clones spread throughout the area that originally lit up on the PET… which means, no matter the state of the cancer today, if Lily was to do surgery, he would remove the same wide margin of tissue he would have removed when the cancer was obvious.
Asked what he recommends, Dr. Lily was a bit evasive. He said he would need to speak with Dr. Patel first and figure out Dave’s long term prognosis. Lily’s opinion was that if Dave isn’t expected to live more than another 13 to 15 years, that aggressive monitoring and Lupron might be sufficient to keep the cancer in check, but that if Dave expected to live longer than that, the cancer would eventually become refractory, metastatic, and terminal.
Dave told Lily that he is committed to living another 30 or 40 years. In that case, Lily recommended aggressive treatment, but seemed to pull back from surgery as an option. People with high risk disease will often instead do hormone therapy followed by radiation therapy, then maybe drop the hormone therapy after 1.5 to two years and monitor. (Once you’ve had radiation, you can’t do surgery. Sometimes radiation can follow surgery, but that appears to be salvage therapy.)
One option that was discussed is oscillating on and off of hormone therapy to avoid bone loss, though there are treatments for bone loss that might enable Dave to stay on Lupron continuously.
Dave and I both kind of got the idea that Lily wasn’t really comfortable with Dave’s comorbidities. While I’m sure he’d be willing to do the surgery if Dave asked, it seems like he’d rather not.
There are immunotherapeutics out there for prostate cancer, but they’re still in trials, and Dave’s comorbidities disqualify him from those. However, if we were to presume that highly effective immunotherapeutics might be made available before Dave’s prostate cancer metastasizes, it could be that he could just stay on Lupron for 10 years or so, then get the fancier treatment when it shows up. It is a gamble though. The surest way to cure the prostate cancer at this point is very likely radiation and two years of Lupron, with all its corresponding long term side effects.
Dr. Lily referred Dave to Dr. Eulau (“You-Low”), a radiation oncologist. Dave made an appointment to see him on 12/1.