Another infusion, another clear CT scan

Last Friday I landed in SLC at 12:30 am from visiting family in Florida. Seven hours later I was in the Huntsman Cancer Center for another CT scan and infusion. I didn't pack my barium contrast, so I had to show up early and drink two bottles of that radioactive sludge. Eventually I was called in for my scan, only to learn that no orders had been entered for my neck scan. It took another half hour to get those orders properly entered. The tech stuck an IV in my vein, ran the dry scan, pumped in the sucrose/iodine contrast agent, then scanned me again as I felt that familiar warmth spread throughout my body and gather in my pelvis.

I then walked over to the clinic for my labs and meeting with Lindsey, the PA who works with Dr. Maughan. She said that he was leading rotations at the hospital and wouldn't be able to make it. We discussed my side effects, and how my rashes and GI issues had been holding steady for the past month. I told her that in March 2020 it will have been two years since I resumed taking Opdivo. I reminded her that I'd been on the drug from February 2015 to December 2017, then had a 15 month break. I knew that a building consensus for duration of nivolumab therapy was two years, but that my case was different -- I'd been on the drug for nearly two years, gone off therapy, had metastatic tumors return, then went back on therapy. We agreed that there were likely very few if any other patients who matched my profile. We discussed the risks of staying on therapy -- the chances of a serious autoimmune disorder increase the longer a patient is on checkpoint inhibitors. The fact that my skin rashes were getting somewhat more pronounced, and that my bowels are consistently looser, could be signals that my T cells are getting more eager to react to cells other than cancer cells. I asked her to start the conversation of how long I should be getting nivoumab,  I also sent Dr. Maughan an email:

Today with Lindsey I raised the question of how long I should stay on nivolumab therapy. It will be two years in March. My first regimen under Noah lasted 22 months. I was off therapy for 15 months before the tumors reappeared. I’d appreciate if if in the next couple of months you would give some thought to the question, perhaps discussing it with Noah, Andrea Apolo, and your HCI group. I doubt that there will be a clear empirical answer, but rather it likely will be a judgment call. I’d be interested to see if there is a collective consensus.  

I walked over to the infusion lab and watched the inversion build over the Salt Lake valley before I fell asleep as nivolumab was pumped into my body. I finished infusion #68, then met my brother for lunch.

On the way up to Huntsville, I visited Jennifer at the memory care facility. My Florida trip was the longest we'd been apart since she started displaying symptoms of early onset dementia. I had talked with her by phone daily but was looking forward to seeing her in person. While we visited, I realized that she had lost the ability to keep track of the passage of days. She did not realize that I had been gone for a week. It was a sobering reminder of how time is a mortal construct.

This morning I received an email notice that my CT results had been posted to MyChart. The radiologist found no changes from my September scans, and no evidence of disease. I was quietly gratified at my clear scans, and once again grateful to the researchers who spent so much time developing this drug.

#67: Itching for more, plus an update on Jennifer

In the past month I've noticed an increase in itching on my scalp, torso, and calves. There is no visible rash, but I've found myself absently scratching my chest or scalp. I went to a dermatologist and told her I thought I was having immunotherapy-induced dermal toxicity. The doctor quickly dismissed my concerns and said I was just getting old and that my skin was dry. She gave me a scrip for tub of lotion and told me come back in six months. I left feeling vaguely dissatisfied.

Yesterday I Dr. Maughan and his PA, Lindsay, and told them about my itching and the dermatologist's dismissive response. I also noted how I'd noticed that my bowel movements were looser than usual, which can be another indicator of checkpoint inhibitor overstimulating my T cells. Because neither was more serious than grade 1, and because my labs were all normal, we agreed that I'd still get my infusion of Opdivo while closely monitoring my body for any signs that my body might be reaching its saturation limit.Infusion #67 was unremarkable. Next month I'll have another CT scan before my infusion. <Yawn> I am so far past worrying about any anxiety on the scan results. Having had more than 40 scans has made me a bit blase about any single one.

An update regarding Jennifer: In the past few weeks she's had a number of additional tests and evaluations. Her doctors now believe with greater confidence that there is an organic component to her cognitive impairment. They have formally diagnosed her with dementia, and suspect that it is frontotemporal dementia. She continues to reside at the assisted living memory care center in Layton, and her acuity continues to slowly decline. She finds it hard to focus and frequently cannot remember what just happened. She uses a walker to assist with her mobility, and requires assistance in all of her activities of daily living.

I visit her daily, taking her water-based physical therapy, or to visit the grandkids, or go to church, or just get a treat like a cookie or ice cream. Her stamina is limited, and after a couple of hours she'll be ready to go back and take a nap. I'm glad that she is able to be at a place that treats her with care and compassion, and where she is able to feel safe and comfortable. While she no longer is able to focus on emails or texts, she enjoys getting old school cards and notes from friends and family. She keeps the cards in a large basket next to her recliner, and sometimes will look through them as if seeing them for the first time.

Dementia is a cruel disease, perhaps even more so for the family and friends who see their loved one's mind waste away. I have leaned to copy by simply dropping all expectations, and being grateful for the joys that I can find each day that I can see her. The greater test is on me, I think, for how I will respond, and how well I can continue to choose compassion and empathy. It is not easy, and at times I feel that my reservoir is being drained faster than it can be replenished. I'm continuing to feel my along, trying to do the next right thing while living one day at a time.

Infusion #66 GO NATS!

I'm sitting in the recliner at the Huntsman Cancer Center with 480 ml of nivolumab pumping into my arm. It's been a quiet month, health-wise. As the weather cools, my skin has dried and I've noticed a bit more itching due to my Opdivo-induced dermal toxicity, but it's not even a grade 1 rash. My labs were great, and the knowledge that my last scan was NED has meant that I have not been thinking too much about the fact that I have metastatic cancer.

On the bladder cancer discussion board, a newly diagnosed patient asked how to deal with the constant threat of recurrence. The poster had been diagnosed with non-muscle invasive bladder cancer, and was getting BGC treatments. That's the mildest form of bladder cancer, and the most treatable. Yes, he'll have to be vigilant, but if he does so it is unlikely he's going to die from it. I started to draft a reply telling him to get some perspective and how I've been living with Stage IV for more than 7 years ... then deleted it. It's not my place to lecture other people whose world has been rocked by a cancer diagnosis, even if it's a totally treatable form of cancer. They need to walk their path and gain what they can from it.

A few days ago I was speaking with my brother and sharing how, at age 18, I broke my leg while riding my motorcycle. The forced cessation of most of my activities during my recovery caused me to reevaluate my life and make some fundamental changes for the better. Had I not broken my leg, my life likely would have been much different. I have seen how times of challenge and trial have caused me to try to be a better person. I think my cancer journey likewise has helped me to focus on things that are more important. It also has helped me sharpen my sense of gratitude for the simple things and little joys each day can bring.

Last night I watched the Nationals play game 2 of the World Series against the Astros. After Adam Eaton hit scored in the 7th inning, he bounced through a gauntlet of teammates, plopped down next to Howie Kendrick, and they both pantomimed driving a car, complete with engine sounds and shifting noises. That type of simple joy from grown men while playing a game reminded me of how important it is to keep things in perspective. I know that it's a lot easier to do when you're winning -- as I currently am in my game of cancer whack-a-mole -- and I hope that I can retain that perspective if and when my tumors return and the cold hand of death is upon my shoulder.

GO NATS!

Kidney infection, infusion #65, CT scans, and NED

In early September, I started feeling lethargic. My appetite declined and I was not sleeping well. I was getting chills, wrapping up in blankets even though it was 80 degrees or warmer. I thought that I might have had a heat stroke from a long motorcycle ride on Thursday Sept. 5, so on Friday I rested, sipped water, and didn’t do much. On Saturday Sept 7 I was feeling a bit better, so after no eating for more than 24 hours I decided to refill my tank at Five Guys. Ominously, I could not finish my burger or even get halfway through my fries. I stared at the uneaten food on the table, never previously having seen such an awful sight. I knew than that my condition was serious, perhaps even terminal.  On Sunday I went into InstaCare, where my temperature was 103.7, my pulse was uneven, and there was blood in my urine. While I was waiting for the doctor’s assessment, I started researching on PubMed the symptoms of kidney cancer, as well as reports of renewed urothelial cancer in neobladders (uncommon, happening in less than 3% of patients). Eventually, the ER doctor came out and said that I probably had a kidney infection and that I should start taking an antibiotic while she ran a culture on my urine. I asked her to also test my urine for urothelial cancer, and she said she had no idea how to order that. The next morning I went down to Huntsman Cancer Center and left a urine sample with them with instructions to do a detailed cytology. Over the next few days I learned that my urine was positive for an e-coli infection in my kidneys, and negative for urothelial cancer. The Cipro has succeeded in knocking down the infection, and a couple of days ago I proved to myself that I had fully recovered by downing my entire Five Guys order.

The days are getting shorter and the leaves are changing. Last weekend the mountains got their first snowfall. The ski areas are scheduled to open in about 60 days. I had hoped that I would be able to get the foundation of my house set before the ground freezes, but that looks unlikely now. The issue with the fire marshall apparently has been resolved after I provided my builder with the laws and regulations that showed he was wrong, but we’re still waiting for the building permit to issue. Plus, the cost estimates to build the house have been much higher than expected. The trades have inflated their prices by up to 25% this year because there is such demand and skilled labor is in short supply. Material prices have been padded due to uncertainty about trade tariffs. I am resigned to the fact that I won’t be able to break ground until spring.

This morning I had another CT scan, followed by labs and Opdivo infusion no. 65. Everything was routine: I drank the barium smoothies on schedule, the tech easily accessed my vein, and I was run through the whole CT enchilada – neck, chest, abdomen and pelvis. Following the tech’s advice to flush the radioactive isotopes out of my system quickly, I went to McDonalds and drank 4 liters of Diet Coke along with a sausage and egg McMuffin or two. I returned for my labs and visit with Lindsay, the nurse practitioner who was covering for Dr. Maughan this morning. She seemed nonplussed by my recent kidney infection and didn’t think that there was any connection between that and my ongoing treatments for metastatic bladder cancer.

My CT scans showed no new metastatic growth in my neck, chest, or abdomen. The cluster of nodes in my neck that were the target of the radiation in June have shrunk a bit, from 13x11 mm to 11x6 mm. Nothing lit up in the scans, so there is "no evidence of pathologic lymphadenopathy."  NED (no evidence of disease) is a good place to be. It's been a year and a half since I've had such a clean scan. I hope there will be many more.

As I sat in the infusion chair and had the nivolumab pushed into my vein, I looked around at so many other patients who were getting chemotherapy or immunotherapy. Many seemed apprehensive, accompanied by family members who were uncertain how to act. I thought back to those times I was in that position – my first GemCis chemo in 2012; my dose dense MVAC chemo in 2013; and the first few infusions of nivolumab in early 2015 -- and am glad that they are in the past. I feel fortunate that I can see my infusions as routine: an ongoing prophylaxis against a chronic disease. As the events earlier this month reminded me, I am always one event away from being confronted with renewed metastatic growth that plunges me into uncertain treatment options with a low likelihood of success. But I don’t live my life worrying about such eventualities. I live each day as best I can, grateful to God when I lay down to sleep, grateful when I awake.

For there is much to be grateful for. This coming week I will officiate the wedding of my daughter Kirsten, and her fiance Jason – a rare honor and opportunity. I have been closely studying great examples of wedding officiants, including Peter Cook and Rowan Atkinson, and diligently preparing for a once in a lifetime opportunity.

Infusion 64, auctions and a birthday

Since my last infusion at the end of July, I’ve kept busy with making decisions regarding the building materials in the house I’m planning to build. In the past week, I found out why Weber County has not yet issued the building permit: the fire marshall, who is required to sign off on the plans for each house built in the county, has decided that every house not adjacent to a fire hydrant should have a sprinkler system. This is even though the state legislature has specifically said that residential single family homes under 10,000 sf do not need sprinkler systems. The fire marshall apparently has decided to make my proposed house (under 4,000 sf, including the basement) a test case for his authority. Just my luck to run into an overzealous officious intermeddler.

I also have been shopping for snowplows, since my driveway will be about 300 yards long and I don’t feel like shoveling it by hand. New plows for my truck top $6000, so I’ve been looking for used plows. I came across an auction in Denver that had several plows, and bought one for $1500 that happened to have a 30 year old truck attached to it. There was also a bunch of solar panels for sale at the same auction, so I bought a bunch for less than $20 per panel. I figure I’ll put them on the house. Needing a way to get them all from Denver to Utah, I also bought a used trailer. I took an early morning flight to Denver and was picked up by my daughter’s fiancé who drove me to the auction site where I picked up my purchases. Less than a mile up I-25 from the auction site, I blew a trailer tire. Of course, there was no jack and no spare. I left the trailer on the side of the highway, drove to a Walmart to get a jack and lug wrench, drove back, jacked up the trailer and removed the tire. I eventually found a suitable replacement tire, got it mounted, returned and got it on the trailer. 

The blown trailer tire

I figured out that the load on the trailer was heavier than the old truck was able to comfortably pull, so I decided to leave the trailer in Ft. Collins and send one of my boys back for it later. It was the right call – driving across Wyoming, I had a blowout on the truck. Of course there was no spare. Apparently the truck had been sitting for a while and the tires had dry rot. It took 3 hours to get roadside service. The mobile mechanic brought a used tire of the correct size and mounted it on the side of I-80. He also brought out another wheel and tire for a spare, which was fortuitous because 125 miles farther west I had another blowout. 

Blown tire #2

Blown tire #3

I staggered into Huntsville at midnight, having repented of my foolishness of buying stuff at auction without inspecting it.

Or so I thought. For a while been looking for a farm tractor with a front end loader that I could use around the home site, and my son-in-law could use on his 15 acres. Last week at another auction in California’s Central Valley, a Massey Fergeson 398 was available, and I snapped it up for $5500. The next day Spencer was due to leave for an young person’s AA convention in Las Vegas, so I rented a heavy-duty flatbed trailer, hooked it to the F350, and sent him on his way. After the convention was over, he drove to the auction site about an hour north of Bakersfield, picked up the tractor and headed back to Utah. Just north of Edwards AFB in the Mojave Desert of California, the trailer axle snapped in half. 

Aw snap!

 Apparently it had a stress crack in it from previous renters overloading it, and it just gave way. The rental place in Ogden had no idea what to do – “Can you find someone to fix it?” was their solution – so I worked the phones and finally found another franchise manager who took the initiative to get a replacement trailer delivered, the tractor offloaded and reloaded, and get Spencer back on his way. The delay was only 24 hours, but Spencer learned that there’s nothing to do in Mojave other than sweat. 

I met Spencer in SLC and took over driving the trailer and tractor home. Of course, halfway back to Huntsville the tread separated from one of the tires on the trailer -- but at least it didn't blow out! I still had to change it, however. Changing tires on the side of an interstate highway is not fun. But once I got the trailer home, Josh and I could start having fun with our new toy.

In the past week I celebrated by 57^th birthday by having dinner with Jennifer, Chelsea, Josh, Spencer, Garrett, and my brother and sister-in-law. I reflected on how it’s been nearly 8 years since I was diagnosed. When my mets were discovered in in April 2012, the odds of living even five more years was less than 5%. With the advent of immunotherapy, I and thousands of other patients with metastatic cancer have rewritten the statistical odds by surviving far longer than anyone could have predicted.

Today I’m sitting at the Huntsman Cancer Center’s Farmington satellite location and am getting my 64th infusion of nivolumab. The nurse who did my labs (no blown veins this time!) sang praises of how Opdivo and other checkpoint inhibitors have extended the lives of so many patients. I was struck by the thought of how nice it must be for providers to know that the therapies they are providing have a far greater likelihood of helping their patients without the toxic side effects of chemotherapy.

Dr Maughan and I chatted about updates from this month’s BCAN Think Tank (which I did not attend), and how combination therapies continue to be the most promising next line of treatment if and when my cancer progresses. I look at these data not with any dread of morbidity, but simply as gathering information about eventualities that likely will come to pass. I can look at my cancer with objectivity, knowing that I do not control the course of my prognosis. Maybe my continuing with my immunotherapy treatments will keep the beast at bay, but maybe it won’t. There is not enough data available for informed speculation, so I simply learn what I can and continue to live one day at a time.

I scheduled my visits through the end of the year and smiled at the assumption that things would continue on as they have been. Maybe they will, maybe they won’t. It’s part of the mystery of life that makes it worth living.

Another infusion, and other adventures

Last week I had infusion #63. Except for the tech and nurse blowing three veins before finally getting a return, it was another uneventful day. I've got s couple of purple bruises on my arms as reminders, however. At this point I'm inured to minor things like blown veins or longer waits or other things outside of my control. I believe that almost all people doing health care are trying to do their best, but that no one is perfect all the time. So I roll with it.

Speaking of rolling with it, last week I drove Spencer out to the east end of the Uinta Highline trail where he would embark on a 7 or 8 day hike across the east-west spine of that mountain range:

This map is from alltrails.com, which Spencer uses as one of his guides for hiking.

So we loaded my Fatboy into the truck bed and drove about 4 hours to the trailhead a few miles south of Flaming Gorge Dam. After I dropped him off I drove to the west end of the trail head on Mirror Lake Highway and parked the truck at my in-law's camp site. It was pouring rain as I unloaded the Harley. Fortunately I had brought my leathers and gloves, but unfortunately I had brought by half helmet and goggles instead of my 3/4 helmet with a face shield. I was glad I'd put a windshield on my bike, but I still stopped in Evanston and bought a balaclava. Soaking summer rains in Utah are rare -- it is a desert, after all -- and I think it's the only rainy day we've had so far this summer. But even a rainy day on a motorcycle is a good day, as long as you've got the right gear. (Spencer unfortunately got some bad water on his first day, became violently ill, backtracked and hitchhiked to Vernal and spent several days recovering. He's back on the trail now. He'll blog about his hike here.)

Regarding my plans to build a small house, the county finally certified that the water in the well that we'd had drilled was safe to drink. The same day, the engineer finished work on the structural load calculations for the building plans. That meant I could apply for a building permit, which is now pending. Here's the south elevation:

Here's the main floor plan:

I've taken care to design the house so Jennifer may be able to live there, if she is able, with everything on one floor. I've eliminated all entry steps, thresholds, and possible obstacles. All doors and baths on the main floor and basement are wheelchair accessible. The stairs to the basement and second floor can be locked from each floor, and externally accessed.  The exterior doors can be electronically controlled for access and elopement control. I hope that I will be able to enjoy it, along with my descendants. I enjoy the building process -- the conception, design, materials selection, and overseeing the execution -- as long as I'm not the one swinging the hammer.

No changes in my last CT; infusion #62

Last week I had another CT scan, which means 12 weeks had passed since my last one. Since I was diagnosed with bladder cancer in November 2011, I don't think I've ever gone more than 12 weeks without having a CT or PET scan, and sometimes I've had them far more often. I think I'm approaching 40 scans. When I get to 50 I'm told they'll give me a commemorative pin made out of depleted U235. Dr. Maughan looked at my scans and said it appeared there was no significant changes from 12 weeks ago. Good news in that there's no new mets. My persistent tumor at the base of my neck remains essentially unchanged in size:

Slight interval decreased size of the lymph node conglomerate within the left superior mediastinum, measuring approximately 1.3 x 1.1 x 2.5 cm (AP, transverse, craniocaudal. Additional scattered subcentimeter nodes are present. These do not demonstrate aggressive features.

The obvious question was, why the radiation didn't seem to have reduced the size of the tumor. Dr. Maughan said that sometimes radiation can cause inflammation, and that a scan a couple of months after radiation can give a better reading. Or it just might be that my tumor is radiation resistant. So the bad news is that there doesn't seem to be an immediate benefit to the radiation. But since it hasn't caused any side effects, and I got a nifty mask and some good stories as a souvenir, no harm done. And maybe it will have some therapeutic effect down the road. I knew that radiation was never intended to be curative, but to instead turn that persistent tumor into an inert lump of tissue.

Opdivo infusion #62 was routine. Doing infusions every 4 weeks instead of every two weeks (as I had from 2015-18) makes it seem even less of a big deal. Since I'm having no side effects (except the occasion minor rash), I'll keep riding the nivolumab horse until someone comes up with a better idea.

Speaking of riding, I found that I've been missing motorcycle riding. I sold my last Harley in 2017.  The day after my scan and infusion, I bought a used Harley FLSTFI Softail Fatboy with some sweet sounding V&H big radius 2-into-2's. I've already added a Corbin solo seat with backrest and HD hard bags. I've been riding it daily around Northern Utah's mountain roads. On July 2 I rode from Huntsville up to Monte Christo at around 9000 feet, and was having so much fun I kept going all the way to Woodruff, Based on the number of bugs in my teeth after each ride, I must be having a good time.

Two Fatboys

Nuke the whale

On Monday June 3 I drove to the Huntsman Cancer Institute in Salt Lake City for a “pseudo CT” in preparation for my radiotherapy. A pseudo CT consisted of my laying bare chested face up on the table that slides into a CT machine and getting marked for radiotherapy. The first part of marking consisted of immobilizing me. A tech shaped a pillow to cradle my head. The pillow was filled what felt like small silica beads. When the pillow was perfectly shaped, the tech injected a quick-setting gel into the pillow which caused it to lock into shape.

After the pillow had hardened, two techs brought a warm mesh fabric and pressed it all over my face, shaping it around my eye sockets, nose, chin, cheeks, ears, and jaw. I had to hold very still while the mask dried. I could breathe through the mesh, and with some effort could blink my eyes, but could not focus on anything. Nor could I lick my lips, which I found was the most difficult part of wearing the mask. The hardened mask was attached to the pillow. My head and neck were totally immobilized.

Good evening Clarice

Once I was locked in place, the techs drew four small circles on my chest: one on each shoulder, one at the base of my neck, and one above the sternum. They also made four marks on the mask. They then aligned lasers within each of those circles. Where each laser instersected, the tech marked a single point. A brief CT scan allowed the techs to map my supraclavicular metastatic tumor in relation to those points. Once the location marks were confirmed, a tech returned with a tattoo pen. She inked four points on my skin, which would serve as a permanent reference point for each radiation treatment. Each point was smaller than a mole, and barely visible from a few feet away.

With that, the preparatory portion of my radiation therapy was done. I was told that on the following week I would have three sessions, receiving 10 Gy of radiotherapy in each session. I was told that I should feel no of very little adverse effects. Driving myself to and from each session was perfectly fine. I scheduled each of the sessions so that I would arrive after the morning rush hour (although Salt Lake’s traffic is nothing compared to the DC area) and get out before the afternoon rush.

My first session was on June 10. I was told that the techs would lock me into position on the table, take a quick CT scan, and review the radiation plan with the radiologist. With the mask on, my other senses were more attuned and I could feel the CT scan as it vibrated through my neck and chest. After the CT scan was over, I relaxed my grip on the handles and moved my hand. I tech immediately came into the room and told me that, because I had moved, they would have to do another CT scan. I mumbled an apology through my mask and was about to say that no one told me not to move, but thought better of it as I realized that was the whole point of immobilizing me.

Don't move or we'll nuke you

I assume that Dr. Lloyd approved the radiation plan, because after a few minutes the machine started whirring and rotating. The SBRT (stereotactic body radiation therapy) machine has the ability to shape and target the gamma beam to focus only on my tumor and not any other part of my body. The machine slowly circled my body as it irradiated my tumor. I could feel the warmth of the machine as it circled, but of course could not actually see the thing through my mask. I hope this actually works I thought, preparing to spend a half hour or so on the table. But after less than three minutes, I was done. That wasn’t so bad, I thought. It’s not much different that a dry CT scan. Less than 45 minutes after arriving, I was on my way.

I have two other sessions this week. My next CT scan with contrast is scheduled for June 27. With luck, my persistent tumor in my upper chest should be gone. Of course, I don’t expect to be cured by this radiation – all we’re trying to do is nuke the biggest and most durable tumor. I understand that the nature of my metastatic cancer means that I likely have microscopic deposits of cancer throughout my lymphatic system. All we’re doing is whacking the most visible area of cancer. Eventually, my mets will pop up somewhere else, and the game of cancer whack-a-mole will continue. Meanwhile, I’ll continue with my immunotherapy until someone has a better idea.

Opdivo infusion #61 and radiotherapy plans

Today was my 61st infusion of nivolumab. After 3 needle sticks, the nurse was finally able to draw blood. My labs were utterly boring. My consultation with Dr. Maughan and his fellow were routine, only they were excited that I was planning on proceeding with radiation therapy. I brought in the leftover shirts from the BCAN walk and made them available to staff. They were excited for the freebies. The pharmacy rapidly prepared my drug, and after a 30 minute push I was done. It took less than two hours -- one of my fastest infusions yet.

Regarding radiotherapy, after reading more than a dozen articles, I've decided that it's worth it to eliminate the persistent tumor at the base of my neck. The odds of having any long-term harm from radiation seems very low. The benefits are harder to quantify. Since my disease is systemic, radiation is not curative. But it will eliminate the singe largest location of metastatic activity, and that can't be a bad thing. So what the heck, I'll give it a shot. Next week I'll have a simulated treatment, where they'll locate the exact places they want to focus the radiation beams. I'm told I'll get three dots tattooed across my chest that will be used as reference points to exactly place the beams. (I asked whether I get to pick the tattoo design, and was politely refused. The dots will look like small moles, they said. After they're done I can go to Fat Bob's Custom Tattoo Parlor and have him connect the dots however I want.) The actual radiotherapy will be spread over 3 sessions during the week of June 10. I'll have my next CT on June 27, so I should know pretty quickly if the radiation worked.

In other news, I've been moving forward with plans to build a small house in Huntsville. The architectural plans are done and the engineer is reviewing them. The well and septic permits are in hand, and the driller should start on the well next week. Garrett is home from college, and has been helping me move fences and build gates for the 250 yard driveway connecting the street to the building site. I hope to break ground in a month or so, and can hopefully get the roof on before next winter. It all goes to plan (and it never does), I could be moved in by next spring.

I'm thinking about having my persistent tumor nuked

Today I met with Dr. Shane Lloyd, a radiologist at Huntsman Cancer Center, to discuss whether radiotherapy might be appropriate for my supraclavicular node. That cluster of lymph nodes, located on the front of my left clavicle near the base of my neck, has been where distant metastatic activity has most often shown up: first in 2013, propping me to have ddMVAC chemotherapy; again in late 2014, which led to the discovery of and treatment for pulmonary embolisms; in early 2015, when it was the base of a string of tumors growing up the left side of my neck towards my earlobe (and which shrunk dramatically when I started nivolumab immunotherapy clinical trial). In March 2018 that cluster of nodes again lit up, showing my cancer had returned, and I resumed immunotherapy. Since then the tumor had beens stable in size -- not growing, but not shrinking either. It's still showing metabolic activity. Aside from a small node in my lung which may or may not be an active tumor (and which we're monitoring), that supraclavicular node is the only tumor in my body. The question is whether I should have radiation therapy to kill it.

Radiation is usually not used on systemic metastatic cancer, like my TCC. I know that cancer cells are spread throughout my body, and radiation can't be used on every cell unless the goal is cremation. In my case, however, I have this single persistent tumor that flares up every time every time my mets are growing. So my doctors are proposing to use radiotherapy to kill that tumor. Today's meeting was an initial consultation with the radiologist to discuss whether to proceed.

Dr. Lloyd explained that he proposed using a total of 30 grays (Gy) of stereotactic body radiation therapy (SBRT), spread of three fractions (or rounds), every other day. Sometimes this SBRT is called Cyberknife, or Gamma Knife, or X-Knife, or TomoTherapy -- all are merely brand names for similar equipment. Each treatment would last about 30 minutes.  The treatment area is defined using a CT scan; multiple beams (up to 30) are focused on the target (the cluster of metastatic supraclavicular nodes), and the parameters of the radiation are closely defined. The intent is to minimize any side effects to adjacent areas. Since the supraclavicular node is close to my throat, I may have a sore throat for a few days. It may be hard to swallow and my skin might be tender. Those side effects are usually transient. 

Longer term risks include a 10-20% of a thyroid deficiency (I'd be tested annually, and would have to take a pill if that occurs). Other risks (all less than 5%) include radiation pneumanitis (scarring in lung), shortness of breath, dry cough. Those can be treated with steroids and usually resolve. Dr. Lloyd also mentioned a number of other risks that were less that 1%, and which I immediately forgot. Dr. Lloyd said that there was no evidence of which he was aware that this type of radiotherapy could cause or contribute to an autoimmune disorder. 

In addition to getting rid of a persistent tumor, Dr Lloyd said there is a chance that radiotherapy could have a synergistic effect with immunotherapy, and boost my immune system's ability to recognize and fight cancer. This is called an abscopal effect. He said that there were no Phase III clinical trials that had definitely shown an abscopal effect between radiation therapy and immunotherapy. He noted, however there were recent articles and studies that suggested radiotherapy might have an abscopal effect on immunotherapy. I'm going to do some more reading about this. 

For now, I've given the green light to move forward. I want to consult with other doctors about this, however, and may change my mind. But the risks seem low and the idea of nuking millions of cancer cells in my body has some appeal. 

[5/23/19 edit: Here are some additional articles on this subject that I'm reading]:

Harnessing the Immunomodulatory Effects of Radiation in Urinary Bladder Cancer, Cureus. 2019 Feb; 11(2): e4108

Abscopal Effect of Radiotherapy in the Immunotherapy Era: Systematic Review of Reported Cases, Cureus. 2019 Feb; 11(2): e4103.

Immune mechanisms mediating abscopal effects in radioimmunotherapy, Pharmacol Ther. 2019 Apr;196:195-203

Abscopal effect of radiotherapy combined with immune checkpoint inhibitors, Journal of Hematology & Oncology201811:104

Radiation, Immune Checkpoint Blockade and the Abscopal Effect: A Critical Review on Timing, Dose and Fractionation, Front Oncol. 2018; 8: 612.

Immunotherapy in Urothelial Cancer: Recent Results and Future Perspectives, Drugs. 2017 Jul;77(10):1077-1089

The role of PD-L1 in the radiation response and clinical outcome for bladder cancer, Sci Rep. 2016; 6: 19740

Exceptional Response to Nivolumab and Stereotactic Body Radiation Therapy (SBRT) in Neuroendocrine Cervical Carcinoma with High Tumor Mutational Burden: Management Considerations from the Center For Personalized Cancer Therapy at UC San Diego Moores Cancer Center, Oncologist. 2017 Jun;22(6):631-637

Report of an abscopal effect induced by stereotactic body radiotherapy and nivolumab in a patient with metastatic non-small cell lung cancer, 

Radiat Oncol

v.13; 2018

Utah's first BCAN Walk!

On Saturday, May 4, Utah's first walk to end bladder cancer was held in Memory Grove Park in Salt Lake City. 30-40 people attended. Dr. Ben Maughan of Huntsman Cancer Center (and who happens to be my oncologist) addressed the group before we embarked on a pleasant walk through Memory Grove and along City Creek.We're still a bit short of our fundraising goal of $3,000 -- please consider making a donation by clicking on this link. We're looking forward to increasing attendance and fundraising in 2020. Thank you to all who attended, donated, and sent their support!

SLC BCAN walk

Jennifer, me, and Ben Maughan

Infusion 60 and more

I had Opdivo infusion #60 this morning. My labs were normal and I was on the pump for only 35 minutes. I've continued to have no significant side effects - just the ongoing minor rash on my head and calves, and occasional looser bowel movements. I'll take those symptoms over active tumor growth any day.

I neglected to update my last post with the complete CT scan results. Bottom line: no new disease. No active metastatic activity. The supraclavicular node remains unchanged in size (about 2 cm on the short axis). The nodule in my lung is down to 5 mm. So I continue to have stable disease. I'll take those results.

Today, Dr. Maughan raised the possibility of having my superclavicular node treated with cyberknife radiation therapy. Alert readers (hi mom!) may remember that my Kaiser oncologist had proposed that last fall. I had consulted with Drs. Hahn and Apolo, and they both said the same thing: while using radiation to treat metastatic cancer was unusual, given that all of my recurrences have included that same supraclavicular cluster of nodes, neither of them were opposed to the idea. At that time we agreed to table the idea since I was relocating to Utah, and would be continuing my therapy at Huntsman. Seven months later, little has changed. I asked Dr. Maughan about the risks, and he said there was a chance that the radiation could trigger an autoimmune reaction. The odds are low (less than 10%), but worth considering. I said that I'd be interested in hearing what Drs. Hahn and Apolo thought. Dr. Maughan said he would consult with both of them, and if they concurred, he'd refer me to one of the Huntsman radiologists who could discuss the risks with me in greater detail. Sounds like a plan to me.

Utah's first BCAN walk to end bladder cancer is this Saturday. I'm expecting a small turnout since it was planned at the last minute and we have not done much in the way of publicity. But I'm hopeful that we'll lay the foundation for larger walks in the coming years. Maybe I'll post some photos.

In other news, on Tuesday I finally sold my home in Virginia. It took a while and we got less than we were asking for, but that's usually the way it works. I'm glad that Jennifer and I could raise our family there, and I hope the new owners enjoy it. I've moved on. I'm considering building a small home in Huntsville, designed so that Jennifer might eventually be able to safely live there, although she'd likely need ongoing caretaker assistance. I have no idea how long I'll continue to totter on and avoid more metastatic bullets, so I'll just have to figure out what's best for me and my family. Same old story.

CT, Infusion 59, and planning Utah's first walk against bladder cancer

Today I had another CT at Huntsman's Farmington Center. Once again, the ordered did not include a neck scan. Once again, while laying on the table I asked the tech to add it in and, once again, it was done. I made a point of mentioning it to Dr. Maugham's, who apologized and said he'd get it right next time. I have yet to receive all of my CT scan results -- by the time I left, only the abdomen and pelvis scan had been read, which showed no mets. But since I haven't had any mets in my abdomen and pelvis since May 2012, the NED reading of that part of my body was no surprise. Its the chest and neck where the real risk lies.

Dr. Maughan and I also spoke of how I'd noticed more of a rash on my calves, scalp, face, and occasionally on my shoulders. The rash is a low-grade indication of a manifestation of dermal toxicity. I've had an increase of itching, especially on the backs of my calves. It's still grade 1 and a minor side effect. When I get into a spa or sauna, my calves itch like crazy until the skin gets warmed up. I think it's in part due to the drier climate in Northern Utah. I occasionally use a heavy lotion such as Cetaphil, which helps for a day or so. But I'll be monitoring it. May labs were 5x5. My infusion of nivolumab likewise was routine. On the way out I scheduled my next three appointments, each 4 weeks apart.

I've also been planning Utah's first ever BCAN walk to end bladder cancer. I'm planning to hold it on Saturday morning, May 4, in Memory Grove Park in Salt Lake City. You can register to attend, or just make a donation, by clicking on the walk link. Spread the word! The bright orange BCAN walk t-shirts are also useful during deer hunting season.

Infusion 58, and a possible future therapy

Yesterday I returned to the Huntsman Center in Farmington for labs, a check in with Dr. Maughan, and anther nivolumab infusion. My labs were utterly normal. The infusion was routine. I do like the 4 week schedule. I'll have my next CT scan and infusion on April 4.

Dr. Maughan gave me an update from last month's ASCO GU symposium in San Francisco regarding possible future therapies that I might be needing if and when my mono immunotherapy stops working and my tumors resume growing. Many such therapies are being tested in clinical trials; none have yet been FDA approved. One of the most promising is enfortumab vedotin, an antibody drug conjugate that delivers MMAE, a microtubule disrupting agent, to tumors expressing Nectin-4, a protein found on most urothelial cancers. When given to patients who have progressed after having mono immunotherapy, there was a 42% response rate (EV-101 study, NCT02091999). EV and pembrolizumab (a checkpoint inhibitor similar ot nivolumab) is also being tested (EV-103, NCT03288545).

Coincidentally, in the past week I have been exchanging emails with a woman whose husband recently was diagnosed with metastatic urothelial cancer. She came across my blog and reached out to me with questions. Here are our thread (edited to remove specific identifying information).

[March 3, 2019 at 7:03 pm]

Ken, I read some of your blogs and am glad that you found a immunotherapy that works for you. My husband (58) has TCC. After neoCIs/Gem, then 1. did surgery to remove left kidney/ureter PT3; 2. found CIS in bladder 3; and 2 weeks ago found small nodules in lungs PT4. We just shocked. My husband has the option of Keytruda or a trial: Enfortumab Vedotin Plus Pembrolizumab. I wonder how did you decide to go Nivolumab and do you have any tricks to respond it well. D

[March 3, 2019 at 9:11 pm]

D: Thanks for your note. I'm sorry to hear about your husband's Dx. In my case, my distant mets were confirmed by FNA biopsy in 2014. No checkpoint inhibitors had yet been FDA approved at that time, so I enrolled in a clinical trial for Opdivo (nivolumab), starting in early 2015. I was fortunate to have had a complete response, which lasted nearly three years. After my mets returned, my doctors recommended that I resume nivolumab to see if it worked before trying a combination therapy. Right now I've got stable disease, and am continuing with monotherapy infusions every 4 weeks. I'll stick with nivolumab as long as I don't have active tumor growth. I know of no tricks on how to make it work better -- it either works or it doesn't. When the time comes when single agent immunotherapy stops working (and in my mind it's not if, but when), then I'll look at combination therapies, such as Enfortumab Vedotin Plus Pembrolizumab (EV+P). I have the good fortune of being followed by clinicians at NIH, Hopkins, as well as Huntsman in Utah, so I will draw upon a number of opinions before making that decision. So far, I'm keeping the combination therapy options in my back pocket to use when single-agent immunotherapy no longer works.

As for your husband, has he had a biopsy to confirm the nodules are metastatic TCC? Is it expressing PD-L1? The treatment may differ depending upon the answers. Once you have the data, discuss your choices with your husband's onc, and consider getting a second and perhaps third opinion if you can. I'd defer to the consensus of the doctors' recommendations. Pembro has been FDA approved for solid tumors with certain genetic anomalies. If you husband's tumors have those anomalies, it's a good treatment option. The data are available for you to make an informed assessment. The EV+P trial has less available data, although early results are promising. My understanding is that immunotherapy typically is offered first, and if that fails, EV+P may be an option. Going straight to EV+P is a more aggressive therapeutic choice. Getting information about the genetic profile of your husband's tumors could help the decision, but it ultimately boils down to whether you want to try immunotherapy alone (as I have, since so far it's working for me), or jump straight to the combination therapy. Ken

 [March 3, 2019 at 9:38 pm]

Ken: Thank so much for your email and your opinions. You have done great jobs to work with so many good doctors. I just wonder if traveling to different clinics would cause some stress? Feb 2019 CT Scan shows 5 solid nodules in lungs (largest 1.7 cm), while no biopsy, CT Scan report says "compatible to Lung Metastases" comparing his Oct 2018 CT Scan (none) and his Dr thinks so too. When asked PD-L1 test, his Dr said, there is no need because patients with "unqualified" PD-L1 still respond to Keytruda. Thank you to ask these questions, we'd better to check these things before Keytruda. D

[March 3, 2019 at 11:35 pm]

D: I personally found great comfort in seeking multiple opinions. But I'm an unusual patient in that I like to read the medical journals and keep current on fast-moving developments regarding metastatic urothelial cancer (mUC). I don't know where your husband is being treated at -- I believe that talking to an oncologist at an NCI center is important. If your husband has already been to an NCI, and if going to different clinics would add stress to you and your husband, then don't do it.

Checkpoint inhibitors such as pembro (or nivolumab) only work if the tumors are expressing either PD-1 or PD-L1. That's why some doctors (and drugmakers) like to test for those proteins. But those tests are not uniform, for two reasons. First, there is no standard test for those protein levels. Second, those proteins not immutable. They can come and go. A patient can be tested for it, and be negative, yet still respond to a checkpoint inhibitor. But knowing that your husband's tumors tested positive for those proteins suggests a greater likelihood that he will respond to monotherapy. That knowledge may influence your treatment decision.

With tumors growing as rapidly as they are between 11/18 and 2/19 as shown on the scans, however, it's important to start treatment quickly. If getting a biopsy or other answers to my questions would slow things down, then I'd lean towards starting therapy ASAP. In either treatment option that you have identified, your husband would be getting pembro, an immunotherapy checkpoint inhibitor. That's important. Immunotherapy is his best bet for mUC. The question you have asked is whether to have monotherapy, or add in Enfortumab Vedotin at this time. The answer may be influenced on how you and your husband want to have the option for additional treatments if this one fails. Maybe it's important to both of you to know that if pembro alone does not work, you can go to EV+P. Or maybe you want to skip monotherapy and take the more aggressive approach and try EV+P now.

Living with mUC for nearly seven years has taught me to be patient and view my mets as a chronic issue. There's no cure for mUC. The goal of any of the therapies that I've had, or that your husband is considering, is to slow the progression of the disease. I expect that at some point my nivolumab montherapy will stop working, and I'll have active tumor growth. When that happens, I'll try a combination therapy. I have a list of about a half-dozen (including EV+P) that I'll discuss with my doctors, plus anything else they can think of. We'll discuss the pros and cons, and we'll pick one. If it works, I'll ride that horse until it no longer works. If it doesn't work, I'll try the next one. Meanwhile, I'll live my life as best I can and be grateful for each day.  Ken

[March 4, 2019 at 12:08 am]

Ken, Again, thanks so much. My husband's oncologist is at an NCI. We will travel to another NCI for 2nd opinion. We will look into possible PD-L1 test, while starting therapy soon. My husband is at a stage of finding a proper med to survive. He will work with a good nutritionist on his diet. I believe if UC patients can hold on for a few years, new medicines will come out to cure them. Your opinions and experience are really helpful and thank so much for this. D

[March 4, 2019 at 9:24 pm]

Ken, Well, I am sorry to bother you again with questions. But only when you have time. (It seems our Drs do not give much information, in general. We do not push because this is the only decent NCI in our area) But this time, we did try to ask our doctor about PD-L1 test, but he said NO. Here is the answers from our doctor.

1. Do I need PD-L1 test, No, I don't think the predictive power of PD-L1 status is such that we should be using it currently to make treatment decisions. The two principal options are chemotherapy and immunotherapy, and recent chemotherapy didn't do much. So even if PD-L1 were low, I would recommend immunotherapy (or a clinical trial).or any other test prior to starting Keytruda? If so, I had biopsy 11/6/2018 and could sample from it be used?

answer: No, because some pts with negative PD-L1 still respond so we do not use this for a go/no-go decision

2. I understand that Keytruda could still work even if I had a low PD-L1. BUT if my PD-L1 was in fact quite low, would an alternate medication then make more sense? So should my PD-L1 therefore be checked?

answer: No, I don't think the predictive power of PD-L1 status is such that we should be using it currently to make treatment decisions. The two principal options are chemotherapy and immunotherapy, and recent chemotherapy didn't do much. So even if PD-L1 were low, I would recommend immunotherapy (or a clinical trial).
***
Questions for you:

1. There are several immunotherapy, and they have different requirements of PD-L1. Would a different PD-L1 level point to a different immuno med?
2. I contacted another NCI. But I just do not know how this works with a distinct clinic with regard to infusion, scans, trials?
3. Do we really need PD-L1 score?
4. Our nutritionist said she can help with low PD-L1. Have you heard about this?
5. May I know your list of good combined med trials and treatments, if you do not mind.
Thanks so much, D

[March 6, 2019 at 11:45 am]

D: As I understand it, your husband has already decided to get immunotherapy (Keytruda). With that decision already made, I understand why your doctor says no new PD-L1 testing is needed.

To answer your specific questions:

1. No. The 6 different FDA-approved checkpoint inhibitors work using similar mechanisms. All require the tumors to express PD-L1 to work. Some manufacturers have suggested that their drug be used only on patients that test positive for PD-L1, but since there is no agreement on how to test for it, plus the fact that PD-L1 comes and goes, makes the current testing less useful. In my original response, I was wondering if your husband already had been tested for PD-L1, or other genetic testing. Which specific checkpoint inhibitor your husband gets (Keytruda, Opdivo, etc.) isn’t as important as the fact he’ll be getting immunotherapy.
2. Getting second opinions is not easy. To the extent you can stay local, it’s easier. For contact info, see https://www.cancer.gov/research/nci-role/cancer-centers. Ask your doctor who he would recommend. But I would not delay treatment if getting a second opinion would take a while.
3. No, since it’s already been decided that your husband is going to get immunotherapy. I can understand why the doctor says a PD-L1 test is not necessary. The question was whether to add EV at this time, or wait.
4. I’m not aware of any studies supporting the idea that a specific diet can enhance PD-L1 expression. This review article from last year is a mishmash of ideas showing how little is known about diet in assisting the fight against established cancers (as opposed to certain diets helping to reduce the risk of developing certain cancers, which is irrelevant to those of us who are already stage 4). https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5859494.
5. My list is in one of my blog posts from about 6 months ago, I think. EV+P is at the top of my list - it has low side effects and promising benefits. Cabo+Ipi+Nivo is another option, but toxicity risks are greater. Ken

[March 7, 2019 at 5:53 pm]

Ken, Thanks for your help. We like your idea to try a med first, and keep the combined meds later. Just pray for miracles. Best wishes to you and your family. D

Speedy Infusion 57

Today was my second infusion with Hunstman Cancer Institute, and my first at Huntsman's new satellite campus in Farmington, Utah. It's half the distance from Huntsville, and Dr. Maughan spends two days a week there. 2 pm labs, 2:30 pm consult with Dr. Maughan, 3 pm in the infusion chair, and I'm out the door by 4. It was the once of my fastest door-to-door times yet. 

I had nothing unusual to report to Dr. Maughan: the normal occasional rash on my scalp and face, occasional itching of the backs of my calves, especially in hot water; a couple of episodes of diarrhea more likely tied to a cold I picked up than to Opdivo, but I'm always careful to note anything out of the ordinary. We talked about whether I should alternate between CT and PET scans this year, as I did in 2018. Dr. Maughan was ok with either. I prefer CT's because they are faster and have lower radiation exposure, so we agreed I'd stick with that unless there was a reason to have a PET scan. 

I asked Dr. Maughan whether he was going to the GU-ASCO 2019 Annual Meeting in San Francisco next week. Wouldn't miss it, he responded. He thought it was one of the best bladder cancer meetings of the year. I said that I would not be attending, even though NIH would give me an all-expense paid trip in connection with my service on the NCI bladder task force committee. I felt obligated to stay close to home to help care for and visit with Jennifer, who continues to struggle. I told him I'd expect a full report during our next visit. 

CT positive for earwax

Yesterday I had my first CT scan at Huntsman. I've lost count of how many scans I've had during my cancer journey, but I'm pretty sure it's over 30. I laid down on the table and asked the tech if she was going to run scans before and after the contrast, and she said that they usually didn't do that to keep down the level of radiation. I then asked her to verify that I was getting scans of the neck, chest, abdomen and pelvis. She said that my orders didn't say anything about the neck. I told her that the neck should be included, and asked her to call Dr. Maughan to confirm. In a remarkably efficient performance, within 10 minutes she spoke with Dr. Maughan's office, then Dr. Maughan, then scheduling, then insurance, and got all the required approvals. I smiled as she then proceeded to scan my neck and chest without contrast, then injected me with the contrast and scanned my chest, abdomen and pelvis. No charge for the extra millisieverts. As usual, the tech reminded me to drink lots of fluids for the rest of the day. As usual, I went to Five Guys and drank three liters of Diet Coke with my lunch. (I'm still participating in a personalized proof-of-concept clinical trial to demonstrate that drinking Diet Coke offsets any calories consumed during the same meal. The trial has been running for more than thirty years. Further research is needed.)

This afternoon Dr. Maughan's nurse called me with the results: stable disease. I asked whether the  nodule in my lung was still there and showed uptake, and whether my superclavicular node was hot. The nurse paused, then admitted that she hadn't actually read the scans but was just passing along the message from Dr. Maughan. I asked her to send me the readings so I could see where things stood, and she did.

I found that three different radiologists had read my scans: One for the pelvis and abdomen, another for the chest, and another for the neck. The pelvis and abdomen scans were unremarkable, except for the observation that my neobladder had an "irregular contour." That's how they do it in Chicago, bub. The chest scan noted "irregular nodular opacity" in my upper right lobe, unchanged from my CT scan in September 2018. The node next to my left carotid artery continues to measure 13 mm, but it is not "hot" for hypermetabolic activity (e.g., active cancer growth). This is the same node that was showing hypermetaboloc activity in April 2018. The rest of the chest was unremarkable for cancer. The neck scan showed my supraclavicular cluster of nodes that showed hypermetabolic activity on my PET scan on November 28, 2018 to be the same size (1.4 cm x 1.1 cm), but did not show hypermetabolic activity on this scan. Most critically, the radiologist noted "debris within the left external auditory canal." Earwax! Confirmed by CT scan! Nurse, get me a Q tip, stat!

Bottom line for this scan: No active cancer. No new tumor growth. No shrinking, either. I'll stay the course with my nivolumab infusions and ongoing scans.

Intro to Huntsman; Infusion 56

After months of research, in December I switched my health insurance to a Utah-based plan (AARP Medicare Complete, provided by UnitedHealth Care), effective January 1, 2019. I met my new PCP on Jan. 2 – a doctor who had worked with Chelsea during her residency – and got the referral to my new clinical oncologist, Dr. Ben Maughan at the Huntsman Cancer Institute at the University of Utah. From 2013-16, Dr. Maughan did a fellowship at Johns Hopkins, and I had met him while I was participating in the Opdivo clinical trial at Hopkins in 2015-16. He’s an Idaho boy who got his PhD in Pharmacology, went on to get his MD, and did his residency at the U of U before going to Baltimore. He’s a young, energetic doctor who is up to speed on the latest drug developments – just the kind of clinician I want to be overseeing my care.

My initial appointment with Dr. Maughan was scheduled for today, Tuesday, January 8. When I was setting up my appointment, I explained to the patient care coordinator that my next nivolumab infusion was due on January 9. She said she’d have to check with Dr. Maughan to see when I should be scheduled. Yesterday while riding in Snowbasin’s Needles gondola (22 inches of snow in 48 hours!) I learned that I’d be having my infusion after meeting with Dr. Maughan. I’m glad I had primed the pump by exchanging emails with Dr. Maughan.

This morning I made my way to the Huntsman Cancer Center by driving up 100 South, next to the U of U campus. I hadn’t driven up that road since I graduated from the U in 1985, and was amazed at all of the new construction. The former Fort Douglas had been subsumed within the U’s campus. About 20 years ago, Jon Huntsman Sr. had started giving away his fortune made in petrochemicals (especially sytrofoam) by founding a cancer center in Salt Lake City. $1.4 billion later, the Huntsman Cancer Institute has become the premier NCI in the Intermountain West. It has a gleaming new facility and is recruiting young and ambitious doctors and PhDs. It certainly is the most beautiful of any of the 11 different cancer centers I’ve been in, with large windows overlooking the Salt Lake valley.

I made my way up the patient education center where a bank of computers were attached to printers, and printed out reports from the 8 CT and MRI scans that I’d had in 2018. I knew my records had been sent to Dr. Maughan, but I’ve learned that it never hurts to bring my most recent and relevant records to an initial meeting with a new doctor. Since my appointment was for 11:30 am, I expected Dr. Maughan to be running late, and he did not disappoint. I’ve learned that a doctor running late is almost always a good sign, since it shows that, once with a patient, the doctor will take as much time as is needed.   As usual for an NCI, a fellow came in first to review my history and chart my case.

About an hour after my scheduled appointment time, Dr. Maughan came in, introduced himself as Ben, climbed up on the examination table, crossed his legs, and told me how much he’d liked reading my blog. Apparently Noah Hahn had provided a bit of a preview. I asked him whether he minded my talking about him in my blog. He smiled, said he appreciated my asking, and said it was fine. I told him that if I ended up sending him half the patients who had sought out Dr. Hahn, he’d have to send me a thank you card.

I reviewed with Dr. Maughan where things currently stood with my cancer: inconclusive of whether and where my mets were growing; currently continuing with Opdivo until someone had a better idea; Kaiser’s proposal that I get Cyberknife radiation on my supraclavicular node; whether to continue alternating CT and PET scans, or stick with CTs in 2019; and when to start looking more closely at clinical trials. Very much to his credit, Dr. Maughan did not propose radically changing anything that I was already doing. He knew and respected Dr. Hahn and Dr. Apolo, and saw no reason to chart a new course at this time. We agreed that I would continue with Opdivo infusions every 4 weeks. He was not inclined to move forward on Cyberknife at this time, since the node was not causing any problems. He wanted to get another CT scan for later this month, and promised that he would cc Drs. Apolo and Hahn on the images and results. The decision of whether to continue with CT scans only, or to get additional PET scans, would be driven by what the scans showed. Until and unless my tumors were actively growing and larger than 1 cm on the short axis, I would not be shopping for additional clinical trials.

We did discuss what trials might be appropriate, however. Dr. Maughan’s specific area of interest is using biomarkers to predict and guide future cancer treatments. It’s a tumor-agnostic approach, although he’s mainly focusing on bladder and kidney cancers for the applications. He’s also researching combination therapies that do not use ipilimumab, both because of the toxicities of ipi, and because he sees more opportunity in that space. He was aware of a couple of trials that will soon be opening that might intersect with my future needs, but also understands that I’ll be drawing upon the expertise of NIH and Hopkins when that day comes.

We also discussed whether Dr. Maughan had been active in BCAN. While he was of course aware of BCAN, he has not had a lot to do with it, but was very interested in broadening his exposure. He acknowledged that, as a young cancer center, Huntsman had room to grow in areas of patient support groups. He said that he was not aware of the online cancer support communities sponsored by inspire.com, so clearly I have some education work to do. I told him that Salt Lake had not had a BCAN walk, and that I was thinking about organizing one for the first Saturday in May. He said he’d be happy to participate.

After our visit, I had lab work done.  In a wonderful sign of progress, the perfusionist used an IV needle and left it accessed since I was having an infusion in less than an hour. Bandaged up, I went upstairs to the café and had one of the best meals I’d had at a cancer center (blackened salmon, tons of mixed vegetables, and a huge baked potato with a full potato bar). My brother joined me for lunch, then we went down to the new infusion area. It took a while for the pharmacy to compound my nivolumab – something about getting insurance approval – and while waiting, guy came by with a cart full of snacks. I asked for some M&Ms and he handed over 5 packages. The grandkids will think it’s Halloween.

I received infusion #56 while watching the sun set over the Salt Lake valley. While the checkpoint inhibitor was being pushed into my arm, one of the women who work in patient scheduling walked over to tell me that she’d scheduled my next CT for January 17, and my next infusion for February 7. The only thing missing was a full body massage. I told my nurses that those were a standard option at cancer centers on the east coast, but for some reason they didn’t believe me. Maybe next time.