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.