Our Cancer Journey – Part 3: 2018 continues, 2019, and on into 2020

Professionally I work in what is referred to in industry and academia as high performance computing – or more commonly supercomputing. This involves what is referred to as “parallel processing” – multiple different computer processors work on different part of one problem at the same time (in parallel).

From the moment we had news that something icky was growing back in my liver, we took a parallel processing approach to my cancer. At Marion’s insistence we looked into two additional sources of opinions. One source of opinion was Dana Farber Cancer Institute – affiliated with Harvard University, located in Boston, and like IU one of the best institutions in the world when it comes to gastrointestinal (GI) cancers. We trekked out to Boston and sat down with an oncologist who specialized in colon cancer, who looked through my records, chatted with me for a good while, and then said two things: 1) the treatment that Dana Farber would have given me was exactly what I had been getting at IU, with the possibility that the surgeons I ended up with in Boston might not have been as good as the surgeons who operated on me in Indianapolis; 2) the oncologist said something that helped ease my mind a lot – he said that this cancer had not progressed in a normal fashion and at a normal pace, and that I needed to stop beating myself up. With this information we went home back to Indiana.

But Marion and I had really already known deep in our hearts that my cancer had not progressed normally … and that caused us to have less confidence than we might otherwise have that the plan to just rip out a lot more liver might not work. While we were in that time period between finding out that my cancer had come back, and having my second liver surgery, we continued to investigate other options. One option that we became aware of was in Europe – specifically the clinic of Dr. Rolf Kleef (http://www.dr-kleef.at/en/) who does a combination of hyperthermia and immunotherapy. I wanted to pursue my treatment at the Simon Cancer Center following their guidance. But I also knew that there was a possibility that the US approaches to treatment would take us to a point where we would be playing a game of “let’s see how long chemo can keep Craig alive.” If we did get to that point I wanted to have options.  Treatment at Dr. Kleef’s clinic constituted an option. Given that Marion is a native speaker of German, and given my decent facility with German, treatment at Dr. Kleef’s clinic in Vienna was seemed a fairly accessible option. 

The 0th step in making treatment at Dr. Kleef’s clinic a practical option was getting an analysis of gene expression in my tumor – a type of analysis called EST (Expressed Sequence Tag). EST analysis indicates what DNA in the tumor genome is actually being expressed. Dr. Kleef’s lab required that such analysis be done in a lab in Dusseldorf. My doctors and medical team at the Simon Cancer Center were wonderful about this. As part of my second surgery, surgeon Dr. Michael House dropped a bit of my tumor in a test tube and one of his nurses put that tumor on dry ice and shipped it overnight to the lab in Dusseldorf. 

The results of the EST analysis of my tumor were interesting. In particular, this analysis showed that there were a couple of genes in my tumor that were overexpressed – and when overexpressed these genes “masked” my cancer cells from my immune system. At a cartoon level, it was as if the T-cells in my body – the cells that detect ‘foreign’ cells – would come around looking for cells to mark for death, my cancer cells would say to them ‘nothing to see here, move along, move along’ and the T cells would do just that. This was really interesting news. A genetic explanation for how fast my cancer seemed to be growing, and possibly genes that might be susceptible to immunotherapeutic intervention.

I took the EST analysis report sent to me by the lab in Dusseldorf to the doctors in the Precision Genomics group at the Simon Cancer Center. Their first reaction was to say, “we’ve never heard of this lab and we won’t work with RNA analyses anyway.” Their second reaction was to say, “Hey… there’s some interesting stuff in here.” Given the potential for something interesting to be found in my genome, we made arrangements to get a full DNA sequence of my tumor. This analysis was done – gratis – by a company called Nantomics, Inc. It took weeks for the results to come back. Marion and I were on edge the whole time. In fact, it took so long that Marion and I were on vacation by the time the results came in. And the results offered a ray of hope. A new study, with a new combination of three monoclonal antibodies, had just started at IU in March of 2018 … and if my cancer came back again, I qualified to get into the study.

One part of the “parallel processing” activities was pursuing the possibility of treatment in Dr. Kleef’s clinic, which then turned into the possibility of being entered into a research trial in the US for a novel form of immunotherapy.

The other strand of “parallel processing” was continuing to monitor my health. By early summer I was sure that my cancer was on its way back. One of the blood tests I have gotten regularly is an analysis of something called Cancer Embryonic Antigen. It’s a measure of how many antibodies my body was making against new (embryonic) cancer cells. A normal level is 2.5 nanograms per milliliter or less. CEA levels are not a particularly precise indicator for colon cancer, but they tend to be indicators in a general way. In the summer of 2018, I made a graph of my CEA numbers, all of which were in the normal range – less than 2.5 nanograms / mL. But they made a very nice straight line up. I was sure when I graphed them that the next sample was going to be out of the normal range. I then started asking (pestering?) my doctors about putting me on the experimental drugs in this new trial. As one of my doctors said, they couldn’t do that because they could not study the effectiveness of treatment against cancer until there was cancer to measure.

My CT scans on October 22nd of 2018 solved that problem. My cancer was back. This time I was not flustered. I expected it, as did Marion. We had a plan. Right away the research nurse working with this new study went to work to get me accepted into it. One week – to the day – after a bad CT scan I was receiving my first set of monoclonal antibodies. That’s really light speed, in terms of cancer treatment, and I remain thankful to this day for the work of the doctors, nurses, and staff at the Simon Cancer Center for getting me into this study so quickly.

The study protocol was fairly straightforward: three monoclonal antibodies, in sequence, on the first session of a 6-week cycle. Two drugs at the beginning of week three. Two drugs at the beginning of week 5. Two cycles – 12 weeks – and then a CT scan. Because the MABs (monoclonal antibodies) had to be given in sequence, my visits to the infusion center in Indianapolis could be pretty long. One top of that, one of the drugs I was taking tended to reduce my magnesium levels. I thus generally actually had four bags of stuff put into me on “three drug days” – each drug by itself, and then magnesium, and three bags of stuff put into me on “two drug days.” Another aspect of this whole schedule was that we would celebrate Christmas of 2018 and New Year’s Day of 2019 without knowing if the drugs were working or not. For most of the last many years I have written and sent out a little letter outlining the key and cool points of the past year, tucked away in the Christmas cards we sent. I did not do that in 2018. I could not bring myself to write to a bunch of people that maybe the drugs would work, maybe they would not and I would go from living with cancer to starting to die of cancer. But with now almost two full years of practice Marion and I both did a better job of compartmentalizing. I was alive, and it was Christmas time. We celebrated. We shared with family and friends. And we hoped. And now and then, alone and by ourselves, we cried.

And the closer we got to my next CT scan, the more scared we got. I doubt that the two of us together got as much as one hour of sleep in the two nights prior to January 21st – the date of my first CT scan after the start of immunotherapy. And because we just hate waiting, we always schedule our CT scans for first thing in the morning. This means getting up at 5 am to be at the hospital at 7 am for scans that start at 7:20 am. On the morning of January 21 2019 I informed the technician doing my CT scan that I was declaring 2019 to be “the year of good CT scans.” A stupid thing to do of course, but then again, I often do stupid things. 

One of the great things about being treated at the Simon Cancer Center is that it’s very quick from scan to report. I was done with my CT scans by 8 am. Then off to have blood drawn for blood tests. Then into a consulting room to await my oncologist and my fate. At about 9:15 that morning Dr. Loehrer and research nurse John Spittler walked into the room holding a piece of paper. Marion and I were on the edge of tears. Dr. Loehrer handed me the report and said “here. I want you to read this sentence right here.” I looked at it. Looked again. And then I blurted out, while crying, “significant interval decrease” in my tumors. The immunotherapy was working. Marion and I cried. Gushed. We all hugged. 

The rest of the year was similar. I got to a point where I enjoyed going to the Infusion Center. I know all of the nurses and techs by name. It was the place where good people did bad things to bad cells. It was where I went to get better. Yet each CT scan was preceded by anxiety. During the summer I did what I had done before. I made a graph of my test results. I came to the conclusion that my tumors might simply be gone by the time of my CT scans in fall or winter. September 30 arrived – CT scans just under one year after I started on immunotherapy. For once in my life I kept my predictions to myself. Like usual, my scans were set for 7:20 am. Like usual, I reminded the technician that I had declared 2019 to be the year of good CT scans. Unusually, as Marion and I were walking back to a consultation room, where we usually waited to meet with Dr. Loehrer, we heard him call out to us. “Hey Craig – want to look at your CT scans?” What do you say to this question? Yes, of course. Marion and I walked over, with trepidation. Dr. Loehrer said “o.k. here on the left-hand screen are your scans from a year ago. Here on the right are your scans from today. Look – see where this tumor was a year ago? Look on the right. Nothing there. That spot on your liver we were worried about last year? Look – gone.” The CT scan was clean. “No evidence of recurrent or new metastatic disease.” What that meant was not that cancer cells were gone completely, but rather that there were no clumps as large as about 2 mm (the lower range of what can be detected in the sort of CT scan in use at the Simon Cancer Center). We cried. We gushed.

We worried more. Interestingly enough for me the impact of being told I had a clear CT scan was to worry more. Before I simply expected to die. Now… the possibility of living for a good while was presented to me. I had something to lose again. Not until December 23rd of 2019 and a second clean CT scan did I begin to settle my emotions. And yes… we thought about having had a colonoscopy the day before Valentine’s day in 2017, and what that had done to that holiday. But we decided to go ahead with a CT scan on schedule on Dec 23rdof last year because … well, because without it we would have worried about the worst. This way, good or bad, we would celebrate Christmas without uncertainty. And it was indeed a wonderful Christmas.

So that’s where things stand. Two clean CT scans in a row. I feel great overall. I have a skin rash from one of the MABs, but I can life with that. And as I am (perhaps too) found of saying, your skin tone doesn’t stay good very long when you are dead. I am VERY much alive and living life with my wife and our family. I ran my first 5K trail race of 2020 last weekend. I didn’t do great, but I did better than expected based on how much I have been able to work out so far this year. I am looking forward to what I hope will be a good 2020. I am ever so grateful to the many doctors, nurses, and technicians who have gotten me this far. The median survival time for people who are diagnosed with stave IVa colon cancer is 2 ½ years. I’m well past that with no evidence of cancer visible on a CT scan. Pretty darn amazing. In my next post I’ll talk a bit more about the biological action of the treatment that has gotten rid of my tumors, talk a bit about what I have learned, and try to convey some information that will help you think about your own health.

And for the moment, Marion and I are doing everything we can to savor every minute we have together, with each other, with our family, with our friends.