Clinical expotitions, part 2

My second clinical expotition was more fruitful than the one last month. Short summary: I’m now signed up for a clinical trial in New York City at Weill Cornell Medicine. If all goes as planned, I will return to NY in a couple of weeks for scans, a bone biopsy and then the treatment. The trial consists of a single treatment with 225Ac-J591, followed by a raft of return visits to see how I’m doing. It’s the first trial anywhere of this drug, and the drug itself is made at Cornell. The trial has had good results thus far, so I am hopeful it will work well for me. Working well means I get another reprieve, as I have for the past 1.5 years on Keytruda.

Now for the long version. The day before my expotition, I had an MRI of my pelvic area, very late in the day (didn’t get home until 7:30 PM). My right hip has been hurting recently, and my right leg has been tingling. In consequence, I’ve been exercising less, and not sleeping as well. My oncologist ordered an MRI.

For some reason, lying on a hard surface on my back for 45 minutes caused my tailbone to send loud pain messages to my brain. By the time they pulled me out of the MRI machine, I was hyperventilating. I was supposed to get a second, shorter MRI with contrast, but they did not want me to move between the two scans. So, in a moment of pain-induced cleverness, I asked, “What are the chances my doctor will get what he needs to know from the scan you’ve already done?”.

The technician gave me a knowing look and said, “Extremely good.”

“Can I skip the scan with contrast?”

“Yes, you can refuse it,” she said.

I refused, feeling quite guilty. I am usually a compliant patient, but I’d passed my limit. I wrote an email to my doctor, explaining my decision. I fled home to pack and approximate a night’s sleep.

Unlike my first visit to Weill Cornell, this trip was three days rather than one. I spent two nights in the city, which proved a good strategy. Liz had previously planned a trip to Blacksburg with her sister, to visit their father, so we went separate ways last Wednesday. But my sister-in-law Teresa, who has often encouraged me to go to NYC for treatment, offered to come with me. We met up in the Charlotte airport and flew from there to Newark. After that, it was the Airtrain, NJ Transit, and the subway to the Upper East Side, shlepping our luggage all the way, until we arrived at Teresa’s father’s apartment. A place to stay, within walking distance of Weill Cornell, was a huge blessing, as hotel rooms in that area are $300+ per night.

We rested up and then went to dinner with my nephew Tyler at a Peruvian restaurant near where he lives (in a closet, like Harry Potter–it’s cheap, he says). Good food and conversation. We splurged, taking a cab back afterwards instead of the subway.

The next morning, after a light repast, we meandered towards Weill Cornell, where I had a 12:30 appointment. We stopped at a bakery (of course). In addition to a quiche, I had an apricot pistachio tart. Delicious.

Maison Kayser

The waiting rooms (there were three) at Weill Cornell were jammed full with cancer patients, but we found seats and waited for a long time before we were called back to meet with the doctor. He answered our questions. When I got tired, Teresa took over. She also took great notes.

The 225Ac-J591 clinical trial is a phase one dose escalation and expansion study. That means they try different levels of the drug on different cohorts of participants in order to find the maximum effective dose without severe side effects. The have run some  three-patient cohorts and only one patient, at level six, has had bad side effects (low blood platelets?). So right now they are running a level five cohort and may shortly run a level seven, if their second level six cohort participants do well. If only one in six patients has a bad reaction, they consider it worth trying a higher dose. Once they think they have the best dosage, they will run ten patients through the protocol (that’s the expansion part). If expansion goes well, then they will move on to phase two studies. At some point, I suppose, Cornell will sell the drug manufacturing process to a pharmaceutical company who can then take over funding of larger clinical trials.

The doctor told me to stop Keytruda immunotherapy. He said they only use it for one year max because it stays in your system so long, doing good and bad things for years to come. I like the “for years to come” part. He also took me off my second-line hormone therapy, Xtandi, pills I’ve been on for over two years. I hoping I’ll eventually have more energy without the Xtandi.

If I wanted to fill one of the remaining two level five slots, I needed to sign up right away, because there were twelve people interested. But you have to show up on site to sign (FDA rules) and most of the twelve were probably playing golf in Florida. I didn’t sign right away because I hadn’t talked to Liz or my Knoxville doctor. In fact I was stuck in analysis paralysis without much to analyze. But we left and went back to the apartment for a rest, stopping for some much longed-for NY pizza on the way.

Jan, a good friend of mine I’ve known since second grade, took the train down from her home in the Boston area so we could meet up and the three of us go to dinner. Teresa is moving to the Boston area next month, so I wanted to introduce her to Jan–I thought they could be friends. I like to do this kind of people connecting. I learned it from my father. Jan thoughtfully bought me some doughnuts before we met for dinner. How do people know I like doughnuts?

Dinner at Il Tinello, one of Jan’s favorite places, served great Italian food, and then we talked quite late in the lobby of Jan’s hotel. Some, though not all, of our discussion was about the clinical trial opportunity.

“I’d have signed up this afternoon,” said Teresa.

“What is the downside of signing up?” asked Jan.

I didn’t have a good answer. I had filled Liz in by text message, but she was in bed by the time we got back to the apartment. I emailed an update to my Knoxville doctor. He replied, saying I could try more chemo first, with some radiation to my hurting hip. But the more I thought about it, the more I wanted to jump on the chance to have one of the level five slots and get started right away. I wrote to my NY doctor before midnight, asking him if they had time to sign me up in the morning before I left for the airport. He replied, saying he was free for twenty minutes at 9:05, so I could come over then.

In the morning I walked the mile over to Weill Cornell and talked with the doctor more–he answered my remaining questions and had me sign several documents. He talked me through a probable schedule of appointments but said his clinical trials nurse would handle setting those up. He left, she came in, and we talked a bit more before she delivered me to the phlebotomy lab for a blood draw (six tubes). Then I walked back to the apartment, stopping only for some bagels to take home–real NY bagels that are boiled before being baked.

Teresa and I packed up and took a cab this time to Penn Station, rather than schlepping our luggage. Good decision. She found her train to Boston and I found mine back to Newark airport.

My trip home was long and tiring. At Newark, I knew I needed gate A37, so when I saw a sign for security on the A concourse, I waiting in the long line and went through. For some reason they wanted us to take out all our food items. So out came my bag of bagels. Something lit up on the full-body scan, and the guy had to feel around my lower back. I could see the picture on the screen. The part that lit up was the exact shape and location of my sacrum. Left over radiotracer from my PET scan in early March? I thought that was kind of cool,

After I escaped TSA and reassembled myself, I hunted for some yogurt and a bottle of water. Then I looked for my gate so I could sit and eat. My gate. Where is my gate? The gates were all for United and I was flying on American. The highest number was A27. Finally, I looked up an airport map on my phone, only to discover there are two sets of gates on the A concourse. And to get to the other one, I would have to leave the secured area and go through another security line. Only in New Jersey.

I sat and quickly ate my yogurt (with a bagel!) and drank all my water. Then I could go to the correct A concourse. Another security line. Take out my food again. But this time the body scanner didn’t light up, so no TSA fingers down the back of my pants. When I got to the gate, I found my flight was delayed. And then delayed more. When a gate agent appeared, I gate checked my bag and did something I’ve never done before. I requested a wheelchair in Charlotte. I knew I’d have to walk a half mile or more between gates. I was tired, my hip hurt, my leg was tingling, and I’d found that escalators and people-movers, not to mention crows, made me unsteady on my feet. I also begged for something else other than a middle seat and got a window seat.

Big mistake: I’d left my noise-canceling headphones in my gate-checked bag. I was stuck with ear buds, which do a poor job covering up airplane noise or loud talkers.

My original itinerary included a four-hour layover in Charlotte. The wheelchair request worked very well. Charlotte was jammed with people, so it was a tremendous blessing to not have to walk between gates. With my delay in Newark and a delay in Charlotte, the layover was only three hours. Another wheelchair pusher made sure I got on the plane early, though under my own power. She also prayed for me and told me “Dr. Jesus” was going to heal me. As I walked toward the plane she told me she loved me. I’ll take it. My best achievement in Charlotte was to send my book manuscript off to my daughter Hannah for copy editing.

I even had a wheelchair waiting in the small Knoxville airport, and the guy pushed me nearly all the way to my car in the long-term parking lot. I got home by 11:30 PM. Everyone was asleep. The dogs woke up enough to acknowledge my presence, but they showed no interest in moving from their warm comfortable spots. So I found my own comfortable spot, took my handful of pills, and eventually slept.

So that was my trip. I am happy with the result: getting signed up for a trial, having Teresa help me out, Jan meeting up with us, dinner with Tyler, real pizza, real bagels, surprise doughnuts, and a lovely, convenient place to stay for free. Many blessings. I still don’t have my schedule for NY visits, but I may get the treatment as early as the beginning of May.

6 Replies to “Clinical expotitions, part 2”

  1. That’s terrific that you had someone to go with and support you in that way! And a free place to stay! Thanks for all the details. Hopefully this trial will be even more beneficial than the last one!

  2. Life is a journey, and it sounds like this leg of the trip was full of blessings. You have a lot of people traveling vicariously with you, Mark, loving and cheering you and Liz on.

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