CR 309: 30th infusion, and lots more

I'm back in the infusion center in Hopkins' Weinberg Cancer Center. All the nurses know me by name. I check the clipboard to see if the pharmacy has released my drug. Once a seat is open I raise the footrest on the recliner, lean back, and open my MacBook. On Tuesdays I get me weekly email listing the accumulated questions, postings, and journals entries regarding bladder cancer on www.inspire.com, and I sift through the posts, find those that I feel I can add something of value, and post a comment. I frequently will get follow-up questions from others who are newer in their cancer journeys. I hope I can offer some guidance.

Before my infusion, I met with Dr. Hahn. I passed along my readings from the AACR conference (of which he was already aware), and he allowed that he had reviewed a considerable number of articles that were about to be released in advance of the forthcoming ASCO conference. He said that interim data from my trial would be released, as well as lots of other information regarding immunotherapy and urothelial as well as other types of cancers. I asked him whether the durability data further showed prolonged survival for those who had complete responses. He said that it did, which gives me hope that my response will last longer than the next scan. Dr. Hahn said that the data also suggested that, for those patients who had stopped immunotherapy, then later had a relapse, that if the patient resumed immunotherapy, odds were good that the cancer would again be slowed or stopped. This suggests that mets BC might be transformed into a chronic disease that, with good management, would enable patients who have responded to live for years.

Now that we know immunotherapy works for some patients, Dr. Hahn said that a key focus for the next couple of years would be to better determine which patients are most likely to respond to immunotherapy, and which patients are most likely to respond to chemotherapy (which also does not work for everyone). It would be great to have better predictive tools to know which therapies will work for whom.

The issue of which therapy will work recently hit close to home. A couple of weeks ago my good friend Cynthia was diagnosed with a leiomyosarcoma, a rare and nasty form of cancer in her abdomen. Watching her and her husband Walter endure the hammer blows of the ongoing bad news while they are trying to drink from the fire hose of information that is blasting at them reminds me of my early days with cancer. It is no fun. I'm trying to help them as best I can with the process, knowing that each cancer is different and what has happened to me is not particularly relevant to to her.

A couple of weeks ago Steve Thrasher wrote an article for the Guardian called "Don't tell cancer patients what they could be doing to cure themselves." The opening lines are perfect: "If you’re a religious person, for the love of God, don’t tell someone with cancer that if they’d just drink juice (or take vitamins, or pray or have a “positive attitude”) that they could cure themselves. And if you’re not a religious person, for the love of reason and decency, don’t tell someone with cancer any of these things, either." Well said. Those of us with cancer have heard so much uninformed nonsense.

Thrasher says that "it’s an act of violence every time someone suggests a simplistic, unproven and fantastic cure for another’s cancer." He discusses why that is so, and hits the nail on the head. Similar themes are explored in posts on ScienceBlog and Ask Amy. I doubt that readers of this blog will be inclined to commit acts of violence on cancer patients by volunteering information about your own or a someone else's cancer experience or some unproven cure, but in case you are tempted: Shut Up. It isn't relevant. Listen, empathize, and provide support by spending time with those you love.

Speaking of which, this past week Jennifer and I flew to Florida and joined all of my kids for a week at the beach. Rose and Lily were there, as well as Josh. We invaded my mom's house, and she and Ralph generously (and wisely) decided to stay at my sister's while we took over her place. It was wonderful to spend time at the beach, or the pool, or in the house, with all of my children, as well as my grandchildren. I was most frequently ensconced in a recliner, surrounded by children's books, with either Rose or Lily (and sometimes both) on my lap as I read to them. Having a small child snuggling on your lap while you read out loud is one of the sublime joys of life.