The Long Overdue, Big-Bun-Loving-Blog Update
So it Begins
Here we are in late February as we struggle on through one of the worst winters I think any of us can recall in a while. And as you may have heard, yes, I have just begun 2nd line chemotherapy for metastatic rectal cancer.
So that’s been happening this week – now to fill in the extensive details from the last 8-9 weeks. It’s a fairly long read, but hey, a lot has happened!!!
December Scan Results
Cancer 3.0
The previously mentioned scan results as described in Natalie’s post back in December, were not what we were hoping for. It appeared there was a new spot on the liver, and four new tiny spots in the lungs. How could this be – I thought we just dealt with this?
Despite the brief period of denial, the initial shock of these results was notably shorter than some of my prior bad results scans. It’s not to say that these findings were not alarming, but that I think I have just become used to these appointments not being very pleasant and bad news becoming the norm.
So...here we go for round 3.
Because of the tumor found back in August, we had already done quite a bit of researching around what the expected treatment would look like, what alternatives might be out there, and just how severe would the side effects be. But here we were again, so off we went once more digging into PubMed and Google Scholar to find what might help make standard therapy more effective, or if we have other options like subsequent surgeries, or ablation?
Surgery didn’t appear to be an option due to the multiple organ involvement, and ablation is something we could consider in the future, but honestly the spots were considered too small to be good candidates for the procedure for now.
So, the initial recommendation was to begin treatment right away with the standard second-line therapy for metastatic colorectal cancer, which tends to be a combo called FOLFIRI and Avastin. FOLFIRI is a cocktail of 5-FU, Leucovorin and Irinotecan. While it seemed like the ‘gold-standard’ it didn’t seem like an approach I was 100% convinced that I should dive right into. I hate chemo. What did my genetic testing results look like? Would I have options around immunotherapy and other new treatments?
Maybe there was less shock, but there was certainly a lot more uncertainty.
In Search of Clarity and Path
Biomarkers – Genetics - 2nd, 3rd and 4th Opinions
Not long after we discussed the new results, we reached out to my doctors at Memorial Sloan Kettering to see if they could provide the results of my IMPACT genetic testing, and of course, ask also to get a second opinion from them.
Did I have a hereditary disorder that tends to cause colorectal cancer? Or did this come about through another mutation? Can I do immunotherapy?
It seemed from the study results that my cancer was not caused by any known hereditary genetic issue, but instead through mutations in the NRAS, APC, SMAD4 and TP53 genes. These details of course didn’t mean much to us at the time, so off to research we went once again. I think Jarod spent the entirety of New Year’s Eve trying to wrap his head around it. Specifically of interest to us were finding if there were therapies that were more effective in attacking mutations from NRAS, or which treatments I would need to avoid if they were ineffective against the mutation(s).
Now that we had this info, we wanted to get MSK’s take on the situation. They felt that the scans were not very conclusive of a recurrence in the liver, and that the spots on the lungs may or may not have all been metastases. And also, that due to our interest in potential trials, it could be prudent to wait a few more weeks to check if the lung spots grow while we took the time to find the right path for me. There’s the MSK curve ball again!
At first, we felt very uncomfortable with what was being said, but the more we thought about it, the more we agreed. If none of these spots were actually cancer - it would be a big mistake to undergo chemotherapy. And if the spots were cancer, waiting a few extra weeks would not likely be the determinant of whether or not it would respond to the treatment.
So, at a minimum we started by following her advice and got an MRI of the liver to get a better understanding of what we’re looking at. The MRI results however only seemed to cloud the picture even more, suggesting that the liver spot was most likely associated with vascular healing from my prior surgery, while also noting that a potential new tumor shouldn’t be ruled out. Well what the heck?
In Pursuit of New Trials
Amongst all that confusion, we had been looking at a trial that was very intriguing, using immunotherapy and a personalized neoantigen vaccine. I’ll refrain from describing the study in too much detail, as up to now we’d really just been exploring. But one key requirement for inclusion in this trial would be that I had ‘measurable disease.’ According to RECIST standards, this meant that at least one tumor had to be greater than 1 cm in greatest diameter. At this point, the MRI and CT were inconclusive for the liver spot – and the lung spots were tiny, and well below 1 cm in diameter. So, one of the clinical trial doctors once again advised – “why try to treat this like cancer if we haven’t confirmed it should be treated like cancer?”
Thus, after some soul searching and long discussions, we decided we would WAIT… Again, it’s a scary decision. But it also gave us some time to pause…think about the future...and…Oh f#%@ it - we’re going to Disney World!
Disney World Trip
The Magic – The Awe, Wonder, and Amazement
Wow…this… trip…was…awesome!
We had never been to Disney World, and we had been hoping to get there for quite some time. On Christmas of 2017 we had surprised the kids with plans to go, only to have those arrangements thwarted by suddenly identified water damage in our basement. Which led to time consuming mold remediation, repairs, and then as always, life got in the way again.
This year we were encouraged/convinced to go through some very kind donations from family, and we also managed to find the perfect timing for the trip, just prior to a work trip, and then the planned starting date for treatment. My manager hooked us up with a very thorough Disney travel agent who provided so many good insights and secured all our main needs with ease.
We stayed at the Art of Animation Resort which was great fun and a good fit for our family. The rooms were decked out in “Cars” decor and garage themed - everything was cleaned well each day, and it was so fun how they laid out the kids stuffed animals each day in fun new ways, haha. Next time we might consider something like the Polynesian, which was a favorite of the kids due to Lilo & Stitch being around every day for breakfast!
No stresses, no worries, just magic.
Seriously, we did not think about cancer. We did not think about work. And honestly, we even took a break from thinking about Love Your Buns! Well, almost. We did rep LYB almost every day with at least one item of clothing, and Jarod and I were both of course displaying our fresh new LYB tattoos.
The positive emotions and just overall magical feeling of the week was greatly therapeutic. Jarod was sure to mention that he had found that a series of studies had shown the benefits of positivity, and benefits of certain emotions on the cytokine Interleukin 6 (IL-6). This is very interesting because from other unrelated studies, findings showed that reduced presence of IL-6 can lead to reduce proliferation of cancer cells, and reduced cancer’s inhibition of the body’s Lymphocytes, Natural Killer Cells and other defensive mechanisms. Here is an excerpt from one report on the physiological power of our emotions:
…Lower IL-6 was correlated with positive emotions…to dig deeper into the type of positive emotion that had the most significant impact on IL-6 levels, the researchers examined the 7 subscales of the DPES (awe, amusement, compassion, contentment, joy, love, and pride) and found that awe had the strongest correlation to lower levels of IL-6 compared to any of the other emotions. In fact, only the degree of awe was able to significantly predict levels of IL-6. When the OMT was taken in the second study, the participants who reported feeling the most awe, wonder, and amazement that day had the lowest levels of IL-6…
Well that is great, because DISNEY GAVE US PLENTY OF AWE, WONDER AND AMAZEMENT!
We loved all the parks for different reasons. Magic Kingdom was probably the overall favorite, but they each had aspects that made them the best. For example, Jarod’s new favorite roller coaster is the rock and roller coaster in Hollywood Studios, despite not having ridden a roller coaster in nearly 20 years. The aesthetic of Animal Kingdom and the unique environments of the different world showcase areas in Epcot were just amazing.
Meeting all of the characters was just so cool for the kids. From Mickey, to Phineas and Ferb, to Lilo and Stitch, to the Ugly Stepsisters, needless to say Camden was feeling his fair share of Awe, Wonder and Amazement!
Post Disney Depression
After such a wonderful week at Disney World, a new terrible phenomenon called “Post Disney Depression” had surfaced in all of us. Skipping over many glorious unfortunate stories (including Callum missing the Lego League State Tournament), we faced some extensive travel delays getting back to Fargo but were home and happy to be surrounded again by our wonderful and supportive family.
But, where is Mickey, Minnie, and the rest of the gang? No more roller coasters?
Who Needs a Job?
Also, wonderfully timed – the day after we returned, Jarod was laid off from his job. It was certainly a surprise to come home to, and not something we expected by any stretch. Especially after all of the empathy and generosity displayed over the last six months. But business is business, and closed doors often lead to glorious open windows.
Amazingly, this has not thwarted our post-Disney glow! We’re already talking about going back, and now we’re ready to make even better use of our fast passes!
Back to Reality
Follow up Scans – What the f@#$ is with this liver?
Shortly after we returned from Disney, and the day after Jarod was laid off, we got to embark on the glorious journey of repeated surveillance scans. We of course hoped for these scans to show that the liver had fully healed and that the lung nodules were either stable or had disappeared. But we also remained grounded and kept ourselves ready for less positive results.
The MRI results were interesting – because it showed no sign of cancer in the liver…like none whatsoever. Essentially is showed whatever vascular healing was happening in the previous MRI, was now back to normal. The CT scan on the other hand showed once again, an area that would otherwise be suspicious for a lesion. Here we go again with the inconclusive liver.
The lung nodules on the other hand did unfortunately show some growth. Nothing super alarming, but they did grow, and one of the nodules now officially met the RECIST criteria of being over 1 cm in diameter. So regardless of what was going on in the liver, we made the decision that we should move forward with treatment. And now that it was measurable, it was agreed that I should pursue the vaccine trial, which was encouraged by both the Fargo and New York oncologists.
Planes, Trains and Automobiles
The pursuit of the trial happened quickly, and with a great deal of rapid coordination with the trial coordinators to find the right time during the week to fit into what was otherwise already a busy week of work and travel. Maybe it worked out for the best that Jarod was laid off?
Once a year I get to travel with my colleagues to the national meeting with our client, this year it was in Philadelphia (never been). Most of these meetings are spent in a large hotel or convention center with not much opportunity to be a tourist, but we did manage to see some sights and take in the slightly above average winter temps. It was so great meeting new people on the team and catching up with all other colleagues.
On the third day in Philadelphia, Jarod, who happened to be in Brooklyn, came over to meet up with me in Philly and help me navigate my way to Columbia University by train, subway, and an Uber. It was quite the experience, unlike anything I would experience in Fargo. I often wonder what it would be like to have a commute longer than 5 minutes to work every day. I’m sure it isn’t always pleasant, it also wasn’t that bad. I guess living in a smaller town does have its advantages!
A Potentially Different Approach
The Good – Personalized Vaccine – What’s a Neoantigen?
Jarod and I are optimistic about the previously mentioned trial at Columbia University in New York. Now that I had measurable disease, we were moving full steam ahead.
The focus of this trial is on the usage of a truly personalized neoantigen vaccine and is part of a wave of new approaches that leverage the immune system to attack cancer based on the genetic makeup/mutations found in my previously resected tumors.
This except from Nature (Dec 2017) gives a pretty good introduction to why neoantigens are an attractive therapeutic option:
Cancer is famous for its ability to deceive, appearing to the immune system as normal tissue while wreaking destruction on the body. But what if cancer cells had ‘tells’ — subtle but unmistakable characteristics that revealed their true nature?
A growing number of scientists say that neoantigens, which are peptides (fragments of proteins) found only on the surface of cancer cells, could be those tells. They are working to develop vaccines that use neoantigens to help patients’ own immune systems to fight tumors.
Neoantigens arise as a twist on the body’s normal process of distinguishing ‘self’ from non-self…when cancer cells adorn themselves with neoantigens, they are advertising that they don’t belong…enough to alert the immune system that something is amiss, and cause it to mount a response to the tumor.
So, what this means in theory and in practice so far, is that the vaccines that are developed would be very selective in how they trigger immune response, only doing so in cancer cells, and largely leaving normal tissues unaffected.
“The beauty of this vaccine approach is the ability to target just the tumor cells,” says Robert Schreiber, professor of pathology and immunology at Washington University School of Medicine in St Louis.
The Bad – My Tissue Samples Better Express Enough Neoantigens!
Before the vaccine can be developed, the clinicians need to test if the previous tumor samples have the right amount, or right type of mutations, which is what seems to drive the volume of neoantigens that can be produced in the vaccine. Quite simply, if there aren’t enough, then it is not likely to be effective, so they would drop me from the study. So, pins and needles for the next couple weeks!
The Ugly – This is Going to be Costly
Assuming the initial tests look good, the expense of getting to New York, either repeatedly flying back and forth, or going and renting an apartment for the duration of the trial looks…quite frankly…daunting. Then you add in the actual medical bills – and the fact that Jarod’s recent layoff means a reset on deductibles and co-insurance – oh and no paycheck. [Help Sara get to New York for the trial!]
So, yeah, we want to get there. But we have a great deal of hoping, praying, crossing fingers and – yeah, searching for jobs to do. And in the meantime, I’m instructed to start standard 2nd line therapy until the vaccine is manufactured, which would be at least a few months. Despite my hatred for chemo, this plan makes sense to me as I don’t think I’d feel comfortable going untreated for an unforeseeable timeframe.
Kicking off Treatment this Week
So, we end this epic journal of my latest updates right back where we began. Yes, indeed I started chemo this week on Monday.
Leucovorin
5-FU
Irinotecan
Avastin
And I obviously don’t love it. But as I move forward, I feel armed with arguably more love, support and friendship than ever before, and I thank God for that. I’m ready to take on this new set of challenges but always am just amazed at the opportunities that cancer can bring.
Upcoming – A Video Blog (VLOG)
My involvement with Love Your Buns has been strongly therapeutic. A core goal of ours is to educate and empower current or future patients, caregivers - and the public in general about rectal cancer - and to give an n=1 view (i.e., in my experience) of what this not-so-peachy process is like. So far, we have scratched the surface of all of that, but there is so much more story to tell. Our goal with the video blog will be an opportunity to further educate and prepare new patients, but also talk about situations where it’s important to be decisive, or consider 2nd, 3rd, or 4th opinions. Stay tuned – I’m looking forward to seeing you all more frequently!
Eyes, Hearts and Doors
As a penultimate closing – launching LYB has also been eye opening, heart opening and door opening. In colorectal cancer and honestly even more particularly in rectal cancer, we have a large national community of stigma-silenced, often embarrassed, and saddened human beings who are struggling to find their way through the fight of their life. This disease is vicious. The treatment is brutal. The long-term side effects are ruthless and seemingly unending. If you get a spot of luck, that’s the happily ever after.
So, we need to get in FRONT of it. And find it EARLY. But in truth - yes, hearts and doors are opening. We’re seeing the attention toward young onset rectal cancer increasing, and an embrace of integrative therapies, new treatment opportunities becoming part of the way forward, and a growing community that supports one another. I’m proud that Love Your Buns can be a part of this movement in whatever ways that we are and will be in the future.
Seriously, love your buns
And yep, people in general still don’t yet love to talk about butts. People don’t like to get their butts checked. But remember crew: everyone has butts, cheeks, bums, rumps, asses and buns. You need to LOVE YOUR BUNS!
Love Your Buns is a non-profit initiative aiming to remove stigma and improve awareness around rectal cancer, its prevalence and its symptoms. A growing epidemic in young adults, rectal cancer is easy to remove if caught early, however due to a variety of reasons, young adults are not likely to seek screening options like colonoscopies. This gap in screening is leading to more advanced disease at diagnosis and more challenging and strenuous treatment. We're working to Educate young adults to increase awareness of the signs and increasing prevalence of Rectal Cancer and to Empower informed decision making and Improve quality of life in Survivorship.
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Help get Sara to New York for her Trial.
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