Another Couple of Tidbits About Ipi

From an article published last June:

Monoclonal antibody treatment also shows several peculiarities. Unlike standard chemotherapy, side effects are a good sign, because they correlate with a strong antitumor response. And progressive disease may not always be a sign of treatment failure: Instead of stalling or shrinking, lesions may actually grow or increase in number during the course of ultimately successful treatment with ipilimumab. This unpredictability has led immunotherapy researchers to develop and adopt a system of immune-related response criteria, an alternative to the WHO's partial/complete response criteria for response to anticancer treatments.

I wrote about the first part of this a couple posts back. The last couple sentences are news to me. It's actually not relevant to my case, since I have been cancer free for quite a while now and don't have any lesions, but it's still interesting.

In related news, it's now been 10 months since I was first diagnosed.

Edit: turns out I first linked to that article on November 2.

Post Secret

I read postsecret.com from time to time. Every so often, I'll see a couple that resonate with me. This week, there were two that I can relate to in a way that I couldn't have this time last year. First, there's this:



Two people in particular come to mind when I see this, but I can think of about ten others who it could also apply to. I have the most wonderful people in my life.

I have mixed feelings about the other one:



I can't imagine trying to fight cancer without at least hoping that there's some reason that I've been put through hell. But sometimes having someone else assert that there's a reason for it can be quite frustrating. Enough said.

Ipilimumab: Let's not get ahead of ourselves

I read an interesting article today entitled "Ipilimumab for Advanced Melanoma: Let’s Not Throw Caution to the Winds." It's a bit technical, but it makes some good if obvious points.

First, there's only one Phase III trial showing benefits for using ipilimumab in patents with metastatic melanoma, so it's still possible that later trials will show less benefit, particularly in light of that first trial's unconventional design. (The control group was given an experimental vaccine, so if somehow that vaccine actually had a negative effect on survival, that could exaggerate the beneficial effects of ipi.) The authors provide the example of a drug called tremelimumab that (like ipi) targets CLTA-4 and showed some early promise but subsequently failed to show a significiant advantage in Phase III testing. Ipilimumab has more evidence backing its efficacy than tremelimumab ever did, but it is still very much an experimental treatment and later trials may have less positive results.

The other thing is that the side effects of ipilimumab can be very serious. In general, ipi isn't as toxic as chemotherapy, but it can still have side effects like colitis, hypophysitis, hepatitis, and a variety of other autoimmune conditions. In some patients (~1-5%) these side effects can be fatal. I've dealt with some moderate side effects myself, and there's a very real cost associated with that.

Despite lingering questions about its efficacy, ipilimumab still represents a tremendous advance. When I was first diagnosed with melanoma on March 29 of last year, no drug had ever showed an overall survival advantage in a Phase III study for patients with metastatic melanoma. That changed less than a month before my melanoma recurred when the initial paper showing the benefits of ipilimumab on June 5. I really can't get over how lucky I am to live when I do. It's awesome to be part of a trial that (hopefully) will provide more evidence for the efficacy of this drug.

I picked up one piece of information from the article that was pretty exciting to me. Apparently the drug seems to have more success in patients who have significant side effects. I've suspected that this is the case all along, and I'm glad that there's actually evidence to support that conclusion. It definitely makes sense. The drug's only direct effect (as far as I know) is to stimulate the immune system, so the cancer fighting effects and any side effects are going to be a function of how effectively it does that. Consequently, the extent of ipilimumab's side effects are a proxy for how much of an effect the ipi will have on the patient's cancer. I already knew that my side effects meant I'm on the drug rather than the placebo; it's good to know that they also mean the drug is working.

Hiking the Pfeifferhorn

I wrote earlier about discovering that my cancer had returned on the 4th of July. I responded to that by taking Eli hiking up White Pine. The bushwhacking misadventure that we had on the way down inspired me to spend quite a bit of time looking over maps of the area, and that in turn inspired me to try for a solo attempt of the Pfeifferhorn the next Friday. The Pfeifferhorn, which USGS topos incorrectly refer to as the Little Matterhorn, is a 11,326 foot triangular peak with views of Utah Lake, Lone Peak, the Great Salt Lake, the ridge line between Little and Big Cottonwood Canyons, Snowbird, and Timpanogas. Phil, Matt, and I tried to hike it in June 2009 and turned back when the weather started to look threatening, but not before Phil took this picture:



Good times. This year I got started right around noon by myself and followed the trail to Upper Red Pine Lake. Past that point the trail disappears, so I bushwhacked through the scree above the lakes. I made two significant mistakes here. First, I went to the east of the upper lake even though I knew that I would need to work my way to the west to actually summit the Pfeifferhorn. Furthermore, instead of trying to gain the ridge as quickly as possible and then taking a leisurely ridgewalk to the foot of the Pfeifferhorn, I traversed across scree and snow fields a couple hundred yards below the ridge for far too long. These mistakes probably added an hour and a half to the time that it took me to get up, but I did get a fantastic view of the Red Pine Lakes while I was traversing above them:



When I finally got to the ridge, I discovered that there's actually a very nice trail along the top of it. I walked west along the ridge for a while and made some 3rd class moves to get to the base of the Pfeifferhorn. I was pretty exhausted by this point and was not a happy camper when I finally looked up at the summit block and realized that I still had about 400 feet of vertical to climb to get from the ridge to the top:



This was probably the closest I came to turning around all day. I was really tired and walking along at 11,000 feet had really take its toll on me, but fortunately I kept going. By going a bit to the left of the ridge, I found a decent path up and 45 minutes later I was looking down from the 11,326 ft summit. (If I remember right, it only took me something like 18 minutes to get down. I was that tired going up.) The view from the top was absolutely amazing. I took a panorama that now serves as the background for the title of this blog. I also took a nice image looking east at White Baldy, Red Baldy, Red Top, the American Fork Twins, Hidden Peak, and Baldy. Yes, White Baldy, Red Baldy, and Baldy are a different mountains and they're all in this picture:



I made it down 3 hours or so after leaving the summit, which was only a bit more than half the time it took me to get to the top. Apparently my route finding on the way up really was just that bad. Still, this hike counts as one of the high points of the last 8 months and maybe of the last 21 years. I suspect that few if any metastatic melanoma tumors have ever visited such a beautiful place. I'm very grateful that I had the strength to make it up an amazing peak after such a stressful week, although I'm pretty sure that making it up that last stretch to the summit was more a matter of willpower than strength. Fighting melanoma has truly been miserable, but the motivation to get out and climb mountains has certainly been one of the bright spots, and this hike was a prime example of that.

Black Humor

This article isn't particularly well written, but as a cancer patient who has developed a bit of a black sense of humor myself, I found it interesting:

Facing Cancer, Sharing Laughter

On that note, I need to confess to something horrible I did a few weeks ago. As I mentioned in an earlier post, I had some scans done at Altaview Hospital at the beginning of November that showed some nodules in my lungs. Although I now know that the nodules were nothing more than inflammation, for a few weeks I thought I was dealing with stage IV melanoma. So when I got a phone call from Altaview asking me for feedback on my recent visit to their hospital, I couldn't help thinking that the visit could have gone better. I managed to control myself as the woman on the other end of the phone, who sounded like a typical bouncy blonde cheerful Utah 24 year old, asked me to rate on a scale of 1 to 5 statements like "The technicians made sure to call me by name." But when she got to the end of the phone call and asked "Is there anything we could have done to make your experience better?" I paused for a moment before giving in to temptation: "You mean other than not finding cancer in my lungs? No, nothing comes to mind." The poor girl had no idea how to respond, and I feel slightly bad for subjecting her to my black humor, but the stunned silence on her end of the line made my morning.

Thanksgiving 5K

At the beginning of November I signed up to run a 5k to raise money for the Huntsman Cancer Foundation. (Incidentally, you can still give money here if you feel so inclined.) I got a really positive response from friends and family members, with eleven people donating a combined 395 dollars in my honor. The Friday after I signed up for this, however, I got back some troubling scans that indicated there were some unexplained nodules in my lungs that would have to be surgically removed and biopsied. I had the surgery last Friday and it went extremely well. The day after the surgery I was able to get up and walk more than a mile around the 5th floor of the Huntsman Cancer Hospital, which may be the best place in the world to recover from a surgery. By Monday I was able to leave the hospital. (They actually asked me if I wanted to try to leave Sunday, but I politely declined. The 5th floor is just too similar to a luxury hotel to want to check out early.) By that point it was clear that I would physically capable of walking a 5k by Thanksgiving, but the forecast called for a temperature of about 12 degrees, which is dangerous for someone recovering from lung surgery. I sought advice from the coordinators for the Huntsman Foundation and they told me that the Cottonwood Recreation Center (where the 5k was being held) has an indoor track. So this morning, Heather and I drove over there, picked up our shirts, and then did 50 laps on the very small indoor track while the rest of the runners actually ran the race outdoors. I would have preferred to complete the actual 5k, but since getting pneumonia really isn't an option right now, it was a nice way to still go through with my commitment to complete a 5k today. Thanks to Heather for coming along with me.

As it turns out, I got the pathology report for the nodules in my lung shortly before I left the hospital Monday. We're not sure exactly what they removed, but it was benign. In other words, my cancer hadn't spread. What an amazing blessing! I'm so grateful to essentially have another chance at life after an extremely difficult couple weeks. Thank you so much to the doctors and nurses at Huntsman for taking such good care of me. Thank you to my family and friends for being so supportive during such a difficult time. Finally, a particular thanks to my dad for being there when we were first told about the scans, when we finally got the pathology report, and at every moment in between, and a particular thanks to Heather for spending the first weekend of her Thanksgiving break nursing me back to health in the hospital.

The 4th of July

As a patriotic American with some great memories from the 4th of July, I look forward to it quite a bit each year. In future years, it will have the added significance of marking the anniversary of the day that I found my cancer had come back. Around 1:35 pm on July 4, 2010, I was sitting on the couch in my living room. As I ran my fingers along the skin below my ear and right at the end of the jaw, I felt a lump that was maybe the size of a large grape. I had no doubt what it was. We had some visitors over, but I rather abruptly stood up and left to go find my dad in his office at school where he was doing some work. As he has done throughout this whole process, he took care of the practical component of the problem and managed to get me an appointment at Huntsman for 2 days later, which is particularly impressive since they were closed on the 5th in observance of the 4th.

I'm particularly grateful that I've had him to take care of logistics since it has meant that I can deal with the unwelcome news in the best way I know how: escaping to the mountains. My brother Eli and I had hiked part way up White Pine earlier that summer before I had to turn around to make it to work, but we had seen enough that I knew I wanted to go back there to camp. We made a quick stop at REI so that I could grab a second sleeping bag for Eli and then started hiking around 6:30. We found a great spot a couple miles in:



We had a delicious dinner of Annie's Mac and Cheese and then crawled into my beautiful new tent and read by headlamp for a while. It really was a lovely spot and a good way to escape from a tough day.

The next morning we got up bright and early at 10:30 or so and had some oatmeal before heading up to the real attraction: White Pine Lake. It took us a while to get there, partially because we weren't as well equipped as we could have been to handle the snowfield we had to cross:



Incidentally, the ridge line that you can see in the background is the Little Cottonwood/Big Cottonwood ridge. In particular, the two high points on it right next to each other on the left side are the Broads Fork Twins, which I would climb 4 weeks later with Matt. One of the coolest parts of hiking all over the Wasatch was really getting a since of how it all fits together. I've always loved those mountains, but now I really know them much better.

The lake itself was pretty awesome. There was still a lot of snow and ice in it even though we were there on July 5th:



We headed down by a different route than we took up. That was a painful lesson in bushwhacking and common sense. One lesson that I relearned: if you're not sure how far you've actually traveled, you almost certainly haven't gone as far as you think. Anyway, my poor navigation skills led to this bit of bushwhacking:

I should point out that Eli and I had just emerged from the thick brush directly behind him. He was a total trooper about it which made me feel much better about getting into that mess. That said, he was glad to get back to the trail, which we intercepted not too far below where we had camped the night before:

All said and done, it was a great escape to one of the most beautiful places I've ever been, and it really couldn't have been better timed. Thanks to Eli for coming along with me and being such a trooper.