Dave and I visited Dr. Patel and Heidi last Monday where Dave reported that his energy level and breathing had deteriorated, that he has a “rattle in his throat,” and that he developed a chronic wheeze starting 10 days prior. Practically, running quickly up a single flight of stairs or carrying two bags of groceries four blocks are sufficient to create difficulty. Nothing was evident upon inspection with a stethoscope. Pulse oximetry was 95, and didn’t drop after making a lap around the ward. Blood pressure was okay at 138/82, but resting heart rate was pretty high at 95, and 119 after the lap. Weight was up at 202#. Transient anemia was resolved. I thought maybe adrenal insufficiency might be responsible, and noted that Dave’s eosinophils had been creeping up for months, which might indicate allergies, but Dr. Patel disagreed and said Dave’s runny nose is probably responsible for the rattle and that he needs to challenge his cardiovascular system more to recover lost capacity. If his condition deteriorates in spite of that, it might worth doing a CT and potentially an Rx for corticosteroids.
Dave reported that he isn’t currently taking any medications. LDH dropped considerably, down to 202, which is promising.
The tumor board met two weeks prior to our visit to discuss Dave’s case and concluded that excising a lymph node for biopsy would likely be unrevealing; there just weren’t any good candidates for disambiguating his sarcoidosis from prospective lymphoma. Instead, Dr. Patel suggested regular monitoring using a recently developed quantitative liquid biopsy, called clonoSEQ™, that amplifies nucleic sequences in the blood matching malignant sequences present in the polyp removed during his colonoscopy. That is, using this new blood test, we can know three or four months sooner whether he’s had a relapse than we could with a PET, even if sarcoidosis wasn’t confounding those scans. The first test is $3K and $1500/each thereafter. Unfortunately, insurance doesn’t cover it, however Dave may be eligible for assistance from Adaptive Biotechnologies, the company that makes the test, both because his insurance doesn’t cover it and because Adaptive wants to use the data to lobby Medicare and other companies to cover it in the future.
If the first clonoSEQ comes back negative, it might be worthwhile doing another colonoscopy to look for another malignant polyp. Alternately, we might just take that to the bank and do another test in a year. We’ll discuss it at the time. If it ever comes back positive, we’ll repeat it in six weeks to confirm, and to see if its stable or getting worse; potentially triggering a PET. We’ll still do other blood work every two months for a year, like LDH, CBC, and chemistry, errant readings in any of which could trigger an ad hoc clonoSEQ test. Assuming no relapses, after the first year, bloodwork drops to every four months; every six months the year after that.
Dave’s next appointment with Dr. Patel is in two weeks to review the clonoSEQ results. Assuming clonoSEQ remains negative, he can take his port out in six months.
We still need to consult with Dr. Lily about the state of the prostate cancer.