Before today's infusion, I met with Dr. Hahn. I told him how he was getting a lot of love from the BCAN web site. He laughed and said that last week a new patient came in with a printout of one of my recent blog posts and comments. he said that he should hire me to be his publicist, and I replied that as long as he kept on facilitating the complete response of people with metastatic bladder cancer, he didn't need a publicist.
On a more serious note, he expressed his frustration that there were not enough clinical trial slots to meet patient demand. Although more trials are supposed to open soon, apparently Hopkins has no current openings for mets BC patients with any of the immunotherapy drugs. And Dr. Hahn was frustrated that patients that should be accepted into the trials were rejected by the trial sponsor for irrelevant reasons -- for example, one patient applicant was found to have prostate cancer during the post-RC pathology (which happens in the majority of RC cases), but the trial sponsor rejected the patient because he had another form of cancer in the past two years. Stupid! And another patient had renal and pelvic cancer, and was rejected because it did not appear to originate in the bladder - even though nivolumab would likely have helped.
I shared how I had corresponded with readers of my blog about their situations, including one patient whose oncologist had written to the insurance company requesting permission to treat a mets BC patient with an off-label therapy of one of the immunotherapy drugs (none of which have been FDA approved for mets BC). The insurance company agreed. Dr. Hahn said he'd probably be writing letters like that for some of his patients.
After a brief physical exam (no side effects, nothing unusual in the past two weeks), he sent me upstairs for the infusion. Unusually for Hopkins, the drug had already been prepared, and I was ushered in for my infusion.
After my infusion was done, I could not go home, because I was scheduled for an ultrasound and guided needle biopsy of my thyroid cyst. Dr. Hahn had decided we'd ignored it long enough, and it was time to verify that it wasn't cancer. It was straightforward - a local anesthetic, followed by four extractions of cells from the cyst. I waited while the interventional radiologist looked at the samples to confirm that she got enough tissue. Apparently not, because she came back for two more samples. She slapped on a band-aid and sent me on my way with instructions to avoid any heavy lifting. She didn't say how long her orders lasted, and I didn't ask. I've now got a doctor's excuse to avoid my honey-do list.
I feel like a celebrity getting a mention on Ken's Cancer Blog! Here's hoping the immunotherapy works as well for us as it did for you. Will keep you posted. -- Sarah
ReplyDeleteHey Ken- Any word on your thyroid cyst samples?
ReplyDelete