CR 430: 38th infusion, a birthday and a rash

Almost immediately after my last infusion two weeks ago, a rash started forming all around my torso. I was fairly confident it was not related to my poison ivy, as I had kept my shirt on while I unwittingly coated my arms and legs in urushinol. My stomach and back looked like it was a testing area for mosquitos with Zika, and it itched like crazy. I applied hydrocortisone cream to the areas I could reach, but with Jennifer in Utah for part of the time helping with our new grandson, I was left to itch by myself. Meanwhile, the poison ivy rash on my legs and arms slowly dissipated.

My 54^th birthday passed this week with a low-key celebration. I had brunch with the family, then Jennifer and I attended Kurios, a steampunk Cirque du Soleil show. I was grateful simply to be around for another birthday – as my friend Bill said, statistics show the more you have, the longer you live. That maxim supports my suspicion that the over 50% of statistics exist to support any desired proposition.

At Hopkins today I was seen by a nurse practitioner as Dr. Hahn was in service. She looked at my rash and said that it looked to be typical for nivoumab-induced dermal toxicity. Since the rash did not cover more than 50% of my skin, it would not cause my treatment to be deferred. She also agreed with my use of hydrocortisone. Unfortunately, the Hopkins pharmacy was moving at a glacial speed, taking more than six hours (and 4+ hours more than scheduled) to compound and deliver my nivolumab. I passed my time by delving into the history of Scotland, doing further reading about the Border Abbeys, and mapping out possible itineraries for our trip in October.

CR 416: 37th infusion and poison ivy

Last week I did some work on the fence surrounding our pool. Several months ago a large tree had fallen and taken out a section of fence, and I finally got around to fixing it. Unfortunately, I did not notice the poison ivy that was clustered around one of the posts. I managed to get urushiol all over my lower legs and forearms. For the past week my skin has been growing some remarkable rashes and blisters. I’ve been applying a topical steroid and muddling through.

Only this morning did it dawn on me that there might be a relationship between my immunotherapy and my body’s reaction to the poison ivy. Dr. Hahn was impressed with the extent of my rash, but said that it appeared to be typical. He cautioned that if the rash did not seem to be getting better in the next week or so I might consider getting a course of steroids and defer my next infusion. I’ll see how it goes.

The Hopkins pharmacy actually delivered my drug early. The surprised reaction of Rachel, my infusion nurse, summed up her surprise: “Shut up!” If the pharmacy keeps doing that, it runs the risk of raising patient expectations.

While at Hopkins, I made arrangements to celebrate Jennifer and my 33^rd wedding anniversary in October by booking flights and hotels to Edinburgh and Dublin. Those two cities have been on my bucket list, and with the UK on sale post-Brexit I was able to find round-trip flights on Aer Lingus for about $600 per person. We’ll spend 8 days in Scotland and 4 in Ireland. I'll use SPG program points for hotels in the city centers. I reserved a bunch of travel guides at the library and have been browsing recommendations from TripAdvisor. I also spent time clicking links in Wikipedia about Scottish history, the 1916 rising in Dublin, and it wound me up to lean so much more. I find that reading up on places I'm going to visit is part of the fun of travel.

I was able to slot this trip between two infusion appointments. I’ll have an infusion the day before we leave, and another the day after we return. I’m used to scheduling my travels around my infusions. I’m somewhat torn about whether I should continue my treatments after I hit the two year next spring. On one hand, I would like the freedom from having to get treatments every two weeks. On the other had, those treatments are why I’m still alive. It’s not like I would die immediately if I were to stop my treatments, and if the cancer returned I could go back on treatment, but it seems churlish to feel inconvenienced by my clinical trial.

And then I think of my daughter’s boyfriend, who has been on dialysis for most of his life. What I do once every two weeks, he has done three times a week for more than 20 years. A few months ago he got a new kidney and has been freed from the dialysis tether. He is still getting used to his newfound freedom. Keeping his experience in mind lends me some perspective: infusions every other week for a couple or years is not so bad.

I have a grandson!

Today Chelsea gave birth to Olie Joshua Slade, their third child, and first son. Seven pounds, nine ounces. Chelsea and Olie are doing great. Josh is thrilled to have a boy and is already planning to play baseball with him. I'm grateful that my life has been prolonged for the birth of my first grandson.

Jennifer flew out to Utah a few days ago and has been staying with the Slade's. Her job is to keep track of Rose and Lily, who are two very active little girls. Each morning between 6 and 6:30 am, Rose walks into Jennifer's room with an armload of books, drops them on the bed, then climbs up and says "Gramma, Gramma, let's read!" If Jennifer does not immediately sit up and grab a book, Rose helpfully tries to open Jennifer's eyes. Little children are wonderful, and even more so when you are awake and your bladder isn't full.

CR 407: Excellent NY Times story on immunotherapy

On July 30 the Grey Lady published an excellent story exploring the rapid rise of immunotherapy to treat metastatic cancer. The Times also included a helpful primer explaining the basics of immunotherapy. Included in the main story are several patients with bladder cancer who were similarly situated to me. Discussing one mets BC patient who started on Opdivo about 7 months before me: 

In June 2014, Mr. Wight became one of the first patients with bladder cancer at M.D. Anderson to enter a study of two checkpoint inhibitors. For three months he received Yervoy and Opdivo every two weeks, and then continued with only Opdivo.

The tumor under his kidney shrank, then disappeared. It has been gone for a year and a half, and he has had no other signs of cancer. He is still receiving Opdivo — the reason for his regular trips to Houston.

“I’m very fortunate,” Mr. Wight said. “It has for me a single irritating side effect. It makes me itch like you wouldn’t believe. I itch all the time but it’s a small price to pay to stay alive and be feeling pretty well.”

An antihistamine helps. Regarding how long he will keep being treated, he said: “It’s experimental. You don’t know the answer. As long as I have positive results I’m eligible for the treatment.”

His oncologist, Dr. Siefker-Radtke, called his response to immunotherapy “fantastic” and said other patients, also in complete or partial remission, were flying or driving to Houston for treatments every two or three weeks. Many do not want to stop taking the drugs.

But doctors do not know how long the treatments should continue. They wonder how long the remissions will last, and whether some will even turn out to be cures, Dr. Siefker-Radtke said. Some studies were planned to last just a year or two, longer than the life expectancy of most patients with advanced disease. Researchers did not think they would have to decide whether to keep treating people for years.

“We were not expecting to see patients going this long,” Dr. Siefker-Radtke said.

I'm in the same boat. I'd like to know wonder how long the remission will last, and whether mine will turn out to be a cure. I'll just keep on puttering along as long as I can go.