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. 

CR 400: 36th infusion, another clear CT scan

Last week I had another CT scan. This time the tech at Kaiser got my IV placed correctly, so no radioactive biceps. The most exciting thing about the scan was that I had to drink two barium smoothies before, which I discovered creates an astonishing amount of gas. The dog was barking every time I let one rip, so he thought it was exciting, at least. For me, the best part was getting word that the scan was negative for any tumors or metastatic activity. Four hundred days into my complete response, I continue to stagger into the light.

Today I discussed with Dr. Hahn my options regarding ongoing treatments. I have three options:

1) I can suspend treatment now and resume it should there be any new metabolic activity.  Dr. Hahn and I agree that there is no compelling reason to do so, absent some autoimmune disorder that suggests my body had had enough nivolumab.

2) The second option is the default: end the trial on schedule in February 2017, two years after I started. I learned today that the determining factor is the passage of time, not number of infusions. Because I skipped at least one infusion due to lung congestion, and extended the time period between infusions by a few days for several other infusions, I'd get only 46 infusions instead of 48. After the infusions are done, I'd still be monitored with regular CT scans to see if there is any new metabolic activity.

3) Continue getting infusions after the scheduled end of the trial. In some cases, the trial sponsor (Bristol Myers Squibb) will agree to continue providing the drug to trial participants to see if the patients continue to tolerate the drug, whether it continues to have a benefit, and whether there are eventually some side effects. I'd want some more information about what has happened to the other guinea pigs who have done that, but the data just isn't there. As the clinical trial nurse said, "you are the data."

I'm leaning towards door #2, but will have months to check out option 3.

As usual, the Hopkins pharmacy was late in getting the compounded drug released. I finished at 4:30 pm, perfect timing to hit rush hour traffic in both Baltimore and DC. I passed the time on the drive talking on the phone with my mom, then brother, then sister. I'm not that fond of talking on the phone while at home, but don't mind plugging in the headset and chatting while behind the wheel. 

Speaking of being behind the wheel, now that our nest is empty, Jennifer and I are talking more seriously about getting an RV a pickup truck and fifth wheel) and touring the continent. We'd like to sell our lake house first, but meanwhile I've been learning more about the options available. It's fun to do, and with the ever-increasing likelihood that I'm not going to die in the next few months,  it's a dream that might even turn into a reality.

CR 386: Garrett to the MTC, 35th infusion

The past few weeks have been a whirlwind as my youngest son, Garrett, graduated from high school, then rapidly shifted gears to prepare for his two-year assignment as a volunteer missionary in eastern Utah and western Wyoming. We did a lot of shopping for clothing and supplies, and he tried to get his fill of video games, knowing he would not be able to play for two years. We spent time with my folks, went down to Lake Anna, and watched the Fourth of July fireworks. Watching him say goodbye to his older siblings was touching. For Jennifer and myself, our sadness of not being able to visit personally with our son for two years was more than offset by our joy at knowing that his serving a mission was one of the best things he could do: by selflessly serving others, he would be serving God, and would experience amazing growth.

On Tuesday, July 5, Garrett and I flew to Utah. We went straight to Mr. Mac, a store that specializes in outfitting missionaries, and got two suits, five pairs of pants, and a sturdy top coat. They tailored everything overnight while we stayed at Slade's. Garrett was able to see and say goodbye to his sister, brother-in-law, and two little nieces. The next morning, we picked up his suits and I drove him to the Missionary Training Center in Provo. There's little time to say goodbye there: missionaries open the car doors, greet the incoming missionary, grab his bags, and usher him inside. A quick hug, and he was off.

Before he entered the MTC, we discussed how there was a chance that I might not be alive when he got home. Garrett understood: he's been living with the uncertainty of his father having metastatic cancer for more than four years. By this point, he'd accepted the fact that I could die at any time. He'd factored that risk into his decision to serve a mission. And I'd much rather have him getting on with his life rather than being like Prince Charles, twiddling his thumbs and waiting for his parent to die. Frankly, Garrett was more broken up by the likelihood that our dog, Nephi, might die while Garrett was on his mission. It was a good reminder to me of where I am in the family pecking order. :)

In any event, once Garrett was launched, I could relax and spend some time with my grandchildren. Rose is nearly 3 years old, and Lily is 14 months. Although I last saw them only a few months ago, it's amazing how fast they change. But when I returned to their house, they both brought me a book and crawled into my lap, one grandchild on each side. I breathed a deep sigh of contentment, knowing that for now, all was well in my world. There are fewer joys greater than having two young grandchildren on your lap, reading books.

While out West, I spent some time looking at land in northern Utah. Jennifer and I have been exploring the idea of building a retirement home where we could age in place. I'm getting more comfortable with the idea of longer-term planning. (By that I mean a year or two in the future.) I'm guardedly hopeful that my current remission might have some durability, but am not so arrogant as to assume that I'll live for decades more. Having that limited horizon currently counsels against my getting into any new business ventures or making speculative long-term investments. But I also realize that Jennifer will need a place to live after I succumb to cancer, and that our current house is too large for her to manage. So we're talking about downsizing. I doubt if we'll be doing anything soon, but I'm beginning to consider our options. We like the idea of building, especially since it's hard to find something that we want: a one-level, barrier-free floor plan for us; a large lower level for family visits or that we could rent out if we wanted; and a studio with a separate entry in case Jennifer wants to have a place for her social work and therapeutic art and drumming. And it has to have a beautiful view of the mountains, and preferably have a southwestern exposure. I found a few lots that are potential candidates. Jennifer will check them out when she goes to Utah at the end of the month to help with our soon to come third grandchild.

So last night I flew back from Utah. My flight was delayed for several hours - something about an engine falling off :) - and I landed at BWI close to midnight. I knew that I had to be at Hopkins at 9 am for my lab work, appointment with Dr. Hahn, and infusion, so I decided to use some SPG points stay at the Aloft hotel near BWI. I had left the car there when Garrett and I flew to Utah, so everything worked well, except for the fact that the hotel shuttle bus driver decided to go home instead of picking me up. In the big picture, it's a small thing.

My labs all looked fine. Dr. Hahn continued to be pleased with my progress. I had read that a side effect from immunotherapy was fatigue, and wondered if I was just getting increasingly lazy, or if I had a medical justification for my lethargy. Something to add to the very short list of benefits of therapy for metastatic cancer: "I'm sorry honey, I can't do [fill in the blank] because I have cancer."

The Hopkins pharmacy reverted to form and took several extra hours to make and deliver my nivolumab to the infusion lab. I worked on this blog and eventually made my way into the infusion area, where I discussed with the nurses how the pharmacy was hours late once again. They replied that they had just been talking about me and how my dose seemed to always be late. I noted how that, last time, it was actually early. Why, one nurse asked. I replied that it was obviously a mistake, and they all broke out in laughter. Of course, having the pharmacy deliver a mistaken compound is one of the greatest fears of a nurse. It's good that we can laugh about it.

Once my nivolumab arrived, it was shoved into my body in record time and I was on my way home at the leading edge of rush hour. I got home just in time to join Jennifer for dinner with the missionaries from our congregation. So my week of travels started and ended with a missionary theme.

CR 367: 34th infusion, and gratitude

I had my 34th infusion today. The only notable thing that happened was that, for the first time ever, the Hopkins pharmacy had my nivolumab ready a half hour ahead of schedule. I got in and out of there in my quickest time yet.

Dr. Hahn observed that my persistent post-nasal drip appeared to be decreasing in severity. I wonder if the persistence is due in part to the fact that I've been on an immunotherapy treatment for 16 months. Dr. Hahn and the clinical trial nurse asked if I had though about whether I wanted to suspend my therapy early (an option being offered by Bristol Myers to those who have had complete responses), and I said that I'd prefer to keep riding that horse. If I start to have more significant side effects or of there is some evidence that I should suspend treatments, I'll consider it, but that hasn't happened yet.

I told Dr. Hahn how I'd reviewed some additional studies on checkpoint inhibitors: Systemic therapy in muscle-invasive bladder cancer: current trends and future promises, by my clinical oncologist, Jeanny Aragon-Ching; Novel therapeutic targets in advanced urothelial carcinoma, out of France; and the Atezolizumab study that lead to its approval for patients with metastatic urothelial carcinoma, by a large group of doctors, including Dr. Dawson of Georgetown (I had seriously considered joining that trail in early 2015). I was looking for more data on durability of results, and the best information was in Table 1 of the Atezolizumab study. For patients who had complete responses, the spider plot suggested that the patients who hit 16 months of disease-free progression are less likely to relapse. Hitting the 24 month mark is even a better predictor. Dr. Hahn agreed with my reading, although he cautioned that we still did not have sufficient data to make valid statistical projections.

These data are slowly persuading me that I might not be spitting into the wind when I think about making plans that stretch one, two, or three years into the future. I'm not comfortable with thinking any farther into the future than that, but I'm beginning to get my head wrapped around the idea that I might be alive in the summer of 2017, and there is a good chance I might be alive in the summer of 2018.

This past week my youngest son has graduated from high school and taken several key steps in preparing to depart for his two year mission for the LDS church. I have felt a particular joy as each event occurred: I did not expect to be alive. That I am is not attributable to anything I have done, but rather to the skill of the health care community and the grace of God. And for that, I am continually grateful.

CR 353: 33rd infusion and another head cold

Yesterday morning I awoke with my sinuses full of mucus. I think I've had more colds while on this Opdivo therapy than pre-therapy. And the colds seem to last longer and are nastier. The drug does mess around with my immune system, after all, so side effects are to be expected. The most common side effect still is an itching scalp. Sometimes the rash appears on other parts of my body, then dissipates. Given the choice between having metastatic tumors growing throughout my body, or an itchy scalp and occasional colds, I'll choose the latter. As the great troubadour Joe Walsh said, I can't complain but some times I still do.

Dr. Hahn listened to my chest and sent me upstairs for a chest x-ray. He wanted to rule out anything related to the Opdivo, so he ordered a chest x-ray. I asked if he had learned anything new at ASCO, and he said that the news was very encouraging regarding immunotherapy with checkpoint inhibitors. He told me that about 24% of patients were seeing partial or complete responses, with about 2/3 of that group having complete responses. Another 20% or so had stable disease. In other words, about half of all patients who had failed chemotherapy and had active metastatic growth had seen the progress of their cancers stopped or reversed due to immunotherapy. That's significantly higher than I had understood the data to show.

Dr. Hahn also said that the trial sponsor was interested in learning how patients who had complete responses fared under three scenarios: (1) completing the two-year trial, going off treatment, and seeing what happens; (2) suspending treatment earlier than two years and seeing what happens, with a guaranteed right to resume treatment if the cancer was to return; and (3) continuing treatment indefinitely. The default is option 1. Option 2 is available to me if I am interested (not really). Option 3 will be considered at the end of the two years, and is subject to the agreement of the drug maker. I appreciated his letting me know there were multiple options available to me, and it reinforced how proactive patients in clinical trials need to be.

We talked about what might happen after my trial ended and if my mets came back. Dr. Hahn said that there was no published data showing how mets BC patients fared in that event, but anecdotal evidence from other types of cancers suggested that a resumed round of immunotherapy might again slow or reverse the cancer growth in some patients. I likely could resume taking Opdivo, or as Dr. Hahn noted, since the FDA recently approved atezolizumab (aka MPDL3280A, trade name Tecentriq) for bladder cancer, I could take that without entering another clinical trial. Hopefully I won't need to cross that bridge, but it's good to know that new options are opening up.

With respect to the durability of my response, obviously the longer I go on the trial without relapse, the better. But for future prognostication, Dr. Hahn agreed that if I can hit the two year mark (March 2017) with no relapse, it bodes well for a more durable response. If I can hit the three year mark, then my odds of having a more durable response increase. In the absence of data showing longevity (I am part of the still-forming data set), I'm just taking it one day at a time.

Meanwhile, my youngest son is hitting his own milestones with senior-related events, his looming high school graduation, then imminent departure on his mission. I am grateful that my life has been spared so I can be with my family for these events. In the early days of my diagnosis, I doubted that I would live this long. It adds a certain sweetness to what might be an otherwise hectic time to appreciate how special each day really is. I am a happy man.