A Bad News Update

My cancer is advancing again despite continuing treatment which is being stopped now.  I am devastated.  I am crushed.  I am angry.  The next pollyanna cheerleader who tells me "You got this!" is going to get punched in the face.

Be warned: this is not a happy post.  Treatment options are running out and without finding something else that works I personally doubt I'll live to ring in 2022.  This is not to say I am hopeless, only that I am living with my eyes open and have seen what happens to most cancer patients that fail multiple treatments.  I just flunked folfiri.

In my previous blog post I wrote about the Covid vaccine and how it can cause artifacts on a CT scan that look like cancer, but aren’t.  At the time, I had just had a scan that showed new artifacts primarily in my left lung, very close to the injection site, while everything below the diaphragm was greatly improved.  Blaming the vaccine seemed suitable at the time, with the plan to do my next scan sooner than we normally would.

It’s now eight weeks later and I’ve been scanned and blood tested, and unfortunately the Covid vaccine is off the hook.  This is genuine cancer in my lungs, and oh by the way my liver lesions are also growing again.  Judging by my blood test numbers, the amount of cancer in me is approximately the same as it was in November 2020 when I ran as the only runner in my very own made-up Thanksgiving 5K.  Except at the time there was no significant cancer in my lungs to slow me down.

My fitness peaked in late March of this year, just before my Covid shot, and has been declining steadily ever since.  In numeric terms I’ve gone from being able to cover multiple miles slightly slower than a 15 minute per mile pace to being only able to cover a single mile in a little over 20 minutes.  It’s unclear how much this change is due to cancer in the lungs and how much is due to my anemic blood counts.

I hear whistling and wheezing sounds when I breath.  It sometimes hurts to take a deep breath.  It's like having a permanent low grade asthma attack which isn't relieved by my inhaler, though frequently Benadryl gives relief in exchange for drug induced fatigue. It really disturbs my attempts to meditate when focusing on my breath instantly reminds me of the deadly cancer in my lungs.

This overall is very bad news.  My oncologist has not said I’m out of options, only that his well of ideas is running dry and I should talk to some “wicked smaht” people in Boston to see if they have any great ideas like a clinical trial or such.  Thusly, next week I have an appointment with a specialist and researcher in my specific form of cancer to come up with a Plan A.  We already have a Plan B, which I call “chemo leftovers”, and involves re-using chemo drugs that have worked on me in the past but in a new combination.  One thing I dislike about plan B is that it involves irinotecan, the “iri” in folfiri, which I just flunked.  I’d feel much better about plan B about a year from now, after the cancer has had a chance to become susceptible to all the ingredients again.

So how are we, that is my wife and I, doing?  About as well as one would expect.  Lots of crying, especially by me as I mourn the loss of the summer I dreamed of.  This scan was supposed to show little to no cancer in the liver and lungs, I’d ask for my chemo to be dialed back, and have a very active summer of long walks, perhaps a bit of running, cutting firewood for the winter, further exploring our land in Vermont and cutting new trails.  There were signs in my poor aerobic capacity that it might be a very bad scan, but I was hoping that was a side effect of chemo that would abate with less frequent treatments.

In a weird way, this bad scan is a relief.  Think about it: for the past couple months my body has been telling me that things are getting worse, while family and friends encourage me to stay positive and hope for the best.  Now I know why my body has been getting worse and there’s a chance something can be done about it and things might start improving.  I’m cautiously optimistic, while also being fully aware that each successive cancer treatment is less likely to work and if it does work, is likely to fail sooner than the previous treatment.

But back to my wife and I.  We’ve had some discussions that we never imagined having in our 50s.  My wife has said that if it was her, she would have stopped treatment long before now, excepting maybe a clinical trial that would advance the science and help future patients.  She has made it clear that I’m under no obligation to continue treatment just for the sake of her.  As much as she’d like to keep me around as long as possible, she would like even more not to see me suffering.

For me personally, I’ve had enough experience with cancer treatments to know that many times they can get rid of the worst cancer symptoms, and the right treatment might just blow the cancer out of my lungs and allow me to go running again.  But I’ve also experienced the absolute darkness that falls over my mind during part of every chemo cycle.  I’ve felt the odd pains that can’t be explained other than saying “chemo” and taking an opioid to make it go away.

That said, I’ve lost my sense of urgency and am beginning to set limits on my doctors.  At the beginning, cancer treatment is very standardized and the doctors stick to the standard protocols and don’t seek much input from their patients.  As time has gone by, all the standard treatments have already been tried, we’re trying things outside the proverbial box, and my doctor actually asks “what would you like to do” after suggesting chemo leftovers.  He also asked my wife what she thought.

My wife knows me very well, and suggested starting the chemo leftovers while at the same time setting up appointments with the experts in Boston.  I liked the outline and added my own conditions: Yes, let’s plan to start the chemo, but I demand an extra week off to allow the healthy parts of my body to recover slightly.  If the cancer continues to grow in that week so be it.  I’ve been on constant chemo since last October and in that time have not so much as missed a week due to low blood counts.

Conveniently, that extra week allowed time to set up at least one appointment in Boston, which I can go to without a chemo hangover, and perhaps we’ll come up with a better idea than leftovers and can get started right away on that.

I also demanded that if we’re doing platinum chemotherapy again that the cycle length should be four weeks and there shouldn’t be any use of neulasta.  Previously, three week cycles on platinum were exceedingly difficult and a number of cycles had to be lengthened to four weeks anyway.  I also dislike neulasta because while it does a great job of raising my white blood cell counts, my other blood counts plummet.  Neulasta is one of those drugs where everybody gets the same dose and for me it’s just too much of a good thing.  Historically, my blood counts recover nicely on their own if given an adequate cycle time, like four weeks on platinum.

And as always, agreeing to chemotherapy, or any cancer treatment for that matter, doesn’t mean you can’t say “stop” at any point in the future.  I am fully in the palliative phase of cancer treatment, where any treatment should be judged on whether it improves my quality of life or not.  I will not suffer excessive side effects for the promise of better health in the future, because I’ve already been burned by that several times and the odds of getting a miracle response go down with each change in treatment.

In closing, let me say how aggressive neuroendocrine cancer is.  I’ve heard that life expectancy is about a year, and judging from the other men I’ve known with the disease that seems about right as they’re all dead now and as far as I know I’m the last survivor of those diagnosed in early 2020.  I know of only one guy who has made it to three years and he didn’t do it by chasing treatment after treatment.  Instead, he had the exact same chemotherapy I had when first diagnosed, it stabilized his disease, and his disease remains stable to this day, three years later with no additional treatment.  That is how most people survive cancer for years and years: They get years of success out of each treatment instead of just a few months, with time of stability for their bodies and minds to recover.

I unfortunately haven’t fallen into that pattern of prolonged success.  I think it’s important that my family and friends realize that if I don’t find another treatment that works with tolerable side effects, this could turn out to be the beginning of the end.  This isn’t a lack of hope, it’s a realistic assessment of my situation.  An experimental drug could produce a miraculous response, but in the vast majority of cases it only provides a modest benefit, if any.

To end on a more positive note, here are some things you can do to help.  For starters, please refrain from pollyanna cheerleading, as it only makes me reiterate the direness of my situation and that won't make either of us feel good.  Also, no unsolicited medical advice please.  Each cancer is unique and I'm already working with experts in the field, and I'm tired of explaining why certain treatments either don't apply to me or are snake oil.

With the don'ts out of the way, here are some do's:  wish me well in my ongoing battle and allow me to whine a bit about the difficulties. Let's focus on the fight at hand and let the results be what they will. If you're religious (I am not), feel free to pray for me, but please don't proselytize. Most importantly, help me enjoy the day we have today and let's have a lot of laughs which really is the best medicine. 

Despite my realistic and possibly depressing view of my situation, I really do have hope that some treatment will work spectacularly well for me and I'll live for years to come.

Beware the Covid Vaccine

 As you will quickly learn, the title of this post is a bit of click baitery.  I encourage everyone to get the Covid vaccine if they haven’t already, but if you’re either a cancer patient, or getting a screening test for cancer, there’s three things you should know about the vaccine that may affect the ideal time to get your shots.  I of course have learned some of this due to receiving a poorly timed Covid vaccine.

The first thing to be aware of is that your immune response to the vaccine can cause your lymph nodes to swell.  If you have a CT scan or similar imaging test at this time, the enlarged lymph nodes can be interpreted as cancer progression.  A number of women have had biopsies due to spots seen on mammograms after getting the vaccine, only to find out that it was a false alarm.  In my personal case, I had a CT scan two weeks after my first shot that showed significant improvements in my liver and bladder, and potential progression in my lungs, particularly in the left lung conveniently located close to the injection site.

My oncologist was very happy with my scan, and it was only after I read the radiologist report online that I found out that there were suspicious things going on in my lungs.  I asked my oncologist to explain why he was so happy despite this, and to his credit he sat down with me and we went over the scan again during one of my chemo infusions.  He explained that the suspect lymph node had been enlarged but stable for some time, and was right next to several blood vessels.  It’s hard to distinguish blood vessels from swollen lymph nodes when looking at a single slice of a CT scan, and he thinks the node may have swollen slightly and visually merged with one of the blood vessels making it look even larger than it really was.

During my cancer journey I’ve routinely had some small lesions in my lung that usually disappear quickly with an effective chemo.  What I’ve never had before that I had this time was “ground glass” artifacts.  I can’t explain what these are, but first heard of them in the context of Covid.  The lung damage caused by Covid shows up in a CT scan as large areas of ground class artifacts.  I had a few scattered areas.  While they could also be cancer, it’s just not consistent with how my cancer has historically behaved.  I’ll come back to these artifacts shortly.

I of course wanted to do anything possible to get answers now.  I had two proposals.  First was a biopsy, but due to the relatively small size of the lymph node and it’s proximity to blood vessels it would be difficult to perform a biopsy without potentially poking a hole in an artery.  If the next scan shows further enlargement, then it would be safer to biopsy and at that point he would want a tissue sample to try to figure out why chemo is working everywhere else but there.

My second proposal was just to shoot the lymph node with radiation without doing any further tests.  I called this proposal “shoot first and ask questions later”.  Unfortunately the lymph node is poorly located for radiation and the radiation field would damage a lot of healthy lung tissue around the lymph node, which would be bad for somebody who likes to be active and engage in endurance sports.  He would prefer to switch to a different systemic treatment based on the results of a biopsy if it comes to that.  So both proposals were voted down, and like in real estate, location, location, location is really important with potential tumors.

So the plan is to do another scan in mid June, about 7 weeks after my last Covid shot which is beyond the 4-6 week window recommended.  I could worry about what’s going on in my lungs for the next month, or I could take advantage of knowing that my treatment plan won’t change and take a trip to visit my vaccinated mother who I haven’t seen since Christmas 2019.  I leave for Connecticut tomorrow, side effects willing.

The second thing to be aware of is that the Covid vaccines, while not being an actual virus, are not inert.  In the actual virus, the spike protein activates a receptor on the cell surface which allows the virus to gain entry to the cell and also sends signals that alter the behavior of the cell.  Basically, my understanding is that the result is that the cell metabolism speeds up, produces more copies of the virus, and the cell is left more susceptible to damage from the virus.

The Pfizer and Moderna vaccines cause your body to produce a large number of spike proteins, which your immune system then produces antibodies to.  The antibodies will inactivate the spike proteins, preventing the virus from binding with the cell receptor and gaining entry.  However, before the antibodies are made, that spike protein is still activating the cell receptor and altering the cell’s metabolism.  This isn’t directly damaging to the cell, but could make it much more susceptible to damage from something like chemotherapy (in cancer patients) or acid (in laboratory mice).  I had a chemo infusion a week after my first shot, which was followed by a CT scan a week later that showed the ground glass damage to my lungs.  I’m thinking this is not a coincidence.

For those wanting to know more, the preceding paragraphs are based on this scientific paper: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7827936.  If you are scientifically minded, feel free to review the paper and let me know if my conclusions are off base.

In addition to the ground glass artifacts, my “running” performance had deteriorated significantly.  In March I was closing in on a 15 minute mile pace (somewhere between a brisk walk and a slow jog), covering 4-5 miles at a time, and set myself a Big Hairy Audacious Goal (BHAG).  By mid April I was barely able to cover 2 miles at a 20 minute pace and my lungs felt horrible afterwards.  My already modest aerobic capacity fell into a pit.

But as of today I perhaps have hit bottom.  I did a 2 mile moderate to brisk walk, and though it required a stratospheric heart rate and heavy breathing, my lungs didn’t feel like crap for a change.  Rather, it felt similar to running the final mile of a 5K, only I was going at a causal walking pace.  To me it’s a sign that my lungs might be healing, that if I go slow enough I can start going further again, and perhaps some aerobic capacity will return with time.

And the final thing to be aware of was something I’ve long suspected but recently heard on TV.  They were talking about how vaccinated people no longer need to wear masks, but one of the potential exceptions is cancer patients, where chemotherapy may suppress the immune system and reduce the effectiveness of the vaccine.  This makes perfect common sense but of course there’s no actual data on it.  I’m slightly extra cautious because of this but generally feel that my immune system, while suppressed, is still functioning at some level so I’m sure I have some antibodies and thus some level of protection from the virus.  I certainly feel safe around other vaccinated people, but wouldn’t dive into a mosh pit of anti-vaxxers.

So that’s what’s been going on with me and some things you should be aware of about the vaccine.  To summarize: If you’re getting a cancer screening test (blood test or CT scan), I’d recommend getting the cancer test first, then get the vaccine.  If I had waited two weeks to get vaccinated I wouldn’t have invalidated my recent CT scan.

Also, if you’re near the end of chemo, or about to start chemo but can delay it a few weeks, try to get the vaccine while you’re not actively on chemo.  This will reduce the potential for additional damage caused by chemo, and your immune system will be able to mount a full response to the vaccine.

And if you’re like me, have been on chemo for months with no planned end in sight, just get the vaccine, prepare for some enhanced chemo side effects (after I noted that the vaccine seemed to make chemo worse, the nurse practitioner said I wasn’t the first patient to say that), and take a little extra caution around unvaccinated people.  As rough as the vaccine can be during chemo, it’s far better than catching the actual virus.

Marathon Monday and More BHAG

Today is Patriot's Day in Massachusetts, otherwise known as Marathon Monday, as usually the Boston Marathon is held on this day, excepting years with pandemics.  This also means it's now been a day and 10 years since I ran my one and only marathon, which happened to be the Boston Marathon.  Did I mention I ran the Boston Marathon?  I wouldn't want that detail to be overlooked.

I still remember making the last turn onto Boylston Street, and breaking down in tears at how far away the finish line still was.  The marathon mentally broke me.  I finished not so much because of determination, but more because it was the fastest way to end the torture I had been enduring for five and a half hours.  However, while many people in similar situations say "never again", I thought "I'll be better prepared for my next marathon".

But then overuse injuries started happening when I tried to increase my training, and then eventually this cancer thing that's a real downer has basically scuttled my marathon dreams.  I'm not saying it's impossible I'll run marathon number two, only that I don't currently see a path to being able to cover 26.2 miles in a single day.  Prior to marathons, I need to get the cancer out of my liver and find myself in a situation where I'm not on continual chemotherapy, or at least can lengthen out the chemotherapy cycle to give me more recovery time between each infusion.  My worst fear is the cancer will start growing again and I'll be back on the street looking for a potential treatment, for what would be the fifth time.  That fear is very high this week as I have a CT scan scheduled for Wednesday, and I'm currently batting less than 50% on getting good CT scan results.

In the meantime, I'm trying to focus on my Big Hairy Audacious Goal, or BHAG, of running/walking/crawling a 5K or more in 50 different towns.  It's a way to keep me moving and with a treatment miracle or two put me in a position to consider another marathon campaign.  So far I've completed 3.

BHAG #2, Mine Falls Park, Nashua NH

Mine Falls Park is a handful of trails along the Nashua River in Nashua NH.  It's a favorite of many of my running and walking buddies because it's nearby and relatively scenic.  This time I went with Donnie, my walking buddy and fellow cancer survivor.  It's both exercise and a support group of two at the same time.

There was still a bit of ice on the river...

A wide spot in the river makes for a scenic view, excepting the parking lot on the far side.  It is on the outskirts of a city after all.

Me and Donnie posing for a selfie in front of what I think are the Falls.  Still masking since we're both immune compromised and we haven't completed our vaccine shots yet.  Yes it's outdoors but we talk a lot within 6 feet of each other, and we're both erring on the side of reasonable caution.  I'm very pleased that my friends are appropriately paranoid about infecting me.

BHAG #3, Barre Falls Dam, Barre MA

Barre Falls Dam has been one of my go-to destinations since the pandemic began.  Getting there requires a scenic drive through rural Massachusetts and there's a number of trails to explore, particularly the Midstate Trail which is how I discovered the dam in the first place.  However, I've pretty much explored all the trails by now, so it probably won't be as frequent a destination going forward.

Fun side story: Years ago I was with a small group of guys who drove to Barre to pick up something.  What we picked up and why I've long since forgotten, but I vaguely remember there was some gathering in the town center with various groups promoting themselves.  Barre is pronounced "bare", and thus we were sorely disappointed in the Barre Women's Club.  It wasn't what it sounded like to us, just some fully clothed women who happened to live in Barre.

This time I did the bare minimum 5K.  This was only day 7 of the chemo cycle, and my body wasn't very thrilled with the exercise.  Normally I'd hope it would tell me I'm out of shape and slow.  But no, it just made me feel like garbage and my mood tanked.  I was crying my eyes out at mile 2, which is not unlike my marathon finish on Boylston Street 10 years prior.  Chemo affects the brain, and makes it focus on all the awful possibilities involved with a cancer diagnosis.  I blame the chemo because in the last days of the cycle I have much better success focusing on the day and enjoying what my body will allow me to do.  I do a lot of crying on the first weekend of the chemo cycle.  Coincidence?  I don't think so.

Perhaps I need to treat these BHAG outings more as casual walks with lots of photo stops and breaks as needed, and not worry so much about how long it takes me to actually cover 5K of distance.  Maybe that will help with the moods.  I'm on my 9th cycle of this chemo and still trying to figure things out, but then again, I've never found two cycles of any chemo to be quite the same.

I also had to include a picture of my car, which is still clean after having been recently washed on a good day that I blogged about previously.  It's now about 24 years since I custom ordered it from Ford (5 speed manual, crank windows, V8 engine, and not much else) and still going strong.  That's the dam in the background, over the car's roof.

Here's a shot from the top of the dam looking at the downstream side.  If you click on it and zoom in you can see a bench down there, and stairs leading down to a rock right by the rapids.  I would have walked down and taken photos, except then I'd have to walk all the way back up and that didn't seem very enticing.

Obligatory selfie in the flood plain upstream of the dam.  If needed, this whole area can fill with feet of water to prevent flooding downstream.  I've only once seen any water in the flood plain. 

A shot of the upstream side of the dam from the Midstate trail.  Note the yellow triangle on the stone post in the bottom right.  Just follow the yellow triangles and you can walk all the way from the New Hampshire line to Rhode Island.  The trail goes to the right up to the road, over the dam, and then back into the woods.

Day 904 Was a Good Day

I have to be really careful when looking at my blood test results online. This week I caught myself paying attention only to the data that supports how I'm feeling. Bad day?  My liver enzymes the week after infusion show a very slight increasing trend.  Better day?  The same test is basically flat when looking at the tests done on the day of an infusion. Meanwhile Chromogranin-a, the only test to have been above normal, has dropped into the normal range during this time.  That’s really the only meaningful change in my blood tests in the past month and it’s a good sign.

I drive my wife nuts with my changing moods.  One moment I'll be the lucky soul that will have an inexplicable complete remission and lives for decades, the next moment I won't survive to see 2022.  Interestingly, when I got her so down that she agreed my cancer was advancing again, suddenly I started pointing to all the signs that it wasn't.  Reverse psychology works on me.  Consider that the next time you try to cheer me up.

Today is infusion day.  Allow me to take this moment and remember what a really good day looks like, for example, last Friday: I woke up in Vermont, because with the arrival of spring we’re now able to spend the night at our weekend getaway, which being on medical leave from work we can now use during the middle of the week.  After breakfast we packed up for the trip back home, which involved numerous trips up and down the stairs carrying such things as a cooler and a cat carrier loaded with our fat, diabetic feline (in this case fat generally means the insulin is working because he was losing weight before diagnosis).

I was healthy enough to drive for the two hour trip home, after which we repeated the exercise of unloading the pickup truck.  I rested a bit after lunch, then got the Mustang out of the garage to run some errands, including dropping a deposit check into the mail for another property we’re buying in Vermont.  Wait, what?

This is going to take some explaining.  My obsession with land in Vermont started when my future father-in-law bought a 100+ acre parcel in the early 1960s and built a one room camp (think wooden tent with a wood stove).  Now, one odd thing about this property is that there was a separate 2 acre parcel smack dab in the middle of the frontage of the property.  And where did he build the camp?  Of course, right near the border with this parcel.

Fast forward to the late 1990s, after I had married my father-in-law’s daughter, and we occasionally spent a night camping in Vermont.  If the neighbors were at their camp, we’d know it because they’d be outside drinking and talking loudly well past midnight, and we could hear it all because we were maybe 150 feet away on our 100+ acre parcel.  At the time, we used to fantasize about buying said parcel if it went on the market just so that we wouldn’t need to worry about what the next neighbor would be like.

But for the last 20 years or so, that property was mostly abandoned, and we got used to having effectively have no neighbor there.  My father-in-law eventually passed away from cancer.  My wife, being an only child, inherited his entire estate.  We ended up selling his house in Connecticut and using the proceeds to buy a 1-bedroom A-Frame directly across the street from the camp, which very conveniently went on the market at just the right time.  Now we had a place with electricity and running water.  An indoor flush toilet is a big improvement from an outhouse, especially if you’re a chemo patient who is prone to diarrhea.

Then in what can only be a sign from from fate, God, or whatever you believe controls the universe, history repeated itself.  My wife’s aunt passed away, and since she had outlived her children and wasn’t on speaking terms with her sister, left her entire estate to my wife in her will.  After selling her house in Connecticut, I got a message from a friend and real estate broker saying the little two acre parcel was on the market, and would we be interested in it?

And as a result for the second time in about 5 years, we are buying a property in Vermont with money my wife just inherited.  Life isn’t fair, but it works both ways.  It’s really unfair that I have an exceptionally deadly form of cancer.  It’s also unfair that while other cancer patients go bankrupt and lose their homes trying to pay for their treatment, we’re adding to our real estate empire in Vermont.

We’ve now filled that annoying gap in the original property, and own the property on both sides of the road for about a quarter mile.  The A frame is roughly right in the middle. So the closest any neighbor can be is about a thousand feet away, which suits us very well.  Our neighbors in Vermont are generally very friendly, but we also enjoy not seeing their houses the minute we step out our front door.

I feel a bit sinfully prideful about our Vermont properties.  Since I was a kid I dreamed of having a weekend getaway, and now I own land that goes all the way from the edge of the local pond to the top of a hill.  To go from one to the other it’s about a mile hike with a 400 feet of elevation gain.  I suits my personality very well to be able to go out my front door and be alone in the woods.

But getting back to Friday, after running my errands I decided to hand wash the Mustang for the first time since sometime in 2019.  It was a very dirty car, but now it shines surprisingly well for a 24 year old car, excepting a few minor battle scars it’s picked up over the years.  This includes some clear coat damage on the hood from bird poop years ago that wasn’t cleaned up in a reasonable amount of time.  It was probably exacerbated since I generally don’t drive the car in the rain, so it didn’t get washed off naturally either.  But I digress.

After washing the car, I had to drive it somewhere so we decided to get Chinese takeout for dinner.  After dinner, well nothing happened because after having been active for most of the preceding 10 hours my body was revolting.  I was stiff and sore and generally nailed to the couch for the evening.  I had effectively had three days worth of activity in one day.  Driving back from Vermont and unpacking is usually enough to tire me out for the day.  The same applies to running several errands or washing a car.  Doing all this in one day is unheard of.

Of course, I always assume when I have a good day that I’ve miraculously healed and will continue to have exceptionally good days for the rest of my life.  Reality hit hard on Saturday as I awoke with a head full of plans for what to do outside on a nice spring day, and instead my body decided to go full blah with a side of diarrhea.  The symptoms were manageable with Imodium and Benadryl and other pills, but that had its own consequences and as a result I was depressed and not at all happy about laying around the house all day, because of course I’m having a bad day and all my days will be bad for the rest of my life.  Do you notice the pattern here?

Sunday I bounced back in the afternoon and went out for a long walk and set a daily mileage record for 2021 and just barely beat my weekly step count high from two weeks ago, both are small signs that I’m still improving.  Unfortunately this walk didn’t count toward my Big Hairy Audacious Goal (BHAG) of 50 5Ks because I did it locally instead of finding some new town to walk in.

So far I’ve only done 2 of the 50 5Ks (or longer) needed for my BHAG, but I always expected it would be a slow start with me gradually building my capacity to both walk and drive some distance in the same day.  Right now there are many days when I can do one or the other but not both.

And now it’s time to rush off to the oncology office and get my chemo infusion.  I’m not really thrilled at the idea, but logically it makes sense to continue treatment.  After all, I wasn’t having days like last Friday prior to switching chemos in late December.  If I want more good days like that, ongoing chemo is a necessity.

Day 880 Update

I have a variety of things to talk about this post, so rather than making a super long title I’m just using the boring number of days since initial diagnosis.  Here’s what’s in this post:

1. The joy of saying “no” to your doctor
2. My really dark moment
3. An update on my Big Hairy Audacious Goal (BHAG)

Just Say “No”

As I’ve likely mentioned before, my relationship with my doctors has changed since my original diagnosis.  At the beginning it was much more structured with little input from me.  For example, I have prostate cancer so I got the standard 6 cycles of docetaxel chemotherapy.  I had bladder cancer so I had cystoscopies to check for recurrence every three months for the first year, then every six months since.

That is until January of this year, when I left a message with my urologist’s answering service cancelling my cystoscopy appointment.  It was essentially a break up via voice mail.  I get regular CT scans that have more reliably shown cancer in my bladder than the painful and stressful cystoscopy.  For whatever reason, probably cancer in my prostate, it is especially painful for me and I spend the time hoping I won’t here “uh-oh, that’s not good”.  The nurse practitioner at the oncology office said it’s a rationale choice in my situation.  It’s one variety of medical torture I’m saying “no” to.

In general I have reached “out of the box” territory, where there is no standardized treatment with rigid rules.  The current dynamic is I make the first “offer” on when to get my blood markers tested and when CT scans should occur, and if it seems reasonable my oncologist goes along with it.  I specifically asked about this changed dynamic and it’s because of the doctor patient relationship that has built up since my diagnosis, and also because it allows me to make the choices that result in the least amount of scanxiety for me.

One suggestion that got some pushback was to try one experimental three week cycle to see if my liver enzymes go up instead of down in the third week.  Of course, the day after that suggestion my latest blood test results showed all my liver enzymes went up slightly, so I sent a message retracting my three week experiment request.  After 12 cycles I’ll have a CT scan and we’ll decide where to go from there.  If I get the results I want, I’ll be saying “no” to two week cycles and asking for three.

And about those “liver enzymes”, specifically ALP.  ALP can also be made in the bones.  When cancer was attacking my bones in late 2018, my ALP was over 900.  I’m trying not to worry about it ticking up to 73 from 67, which is still lower than it was two weeks ago, and well below normal.  It’s just that it’s above the 40-ish that used to be normal for me.

My Dark Moment

It’s very tempting to write only about the good days, and ignore the low spots.  In fact, I will flat out say that this blog is biased to the positive and the good news and only occasionally delves into the dark days.  However I do believe there are good reasons to show some of the darkness, to show that I’m not some weird super human who is enjoying life with cancer (though that can be true some days), and also for the potential lessons in how to get through them.

My bad days happened Thursday and Friday last week, when most people were enjoying the unusual 60 degree early March weather.  My body sometimes responds poorly to sudden weather changes, and a bout of honest diarrhea Wednesday night probably didn’t help matters.  Fun side note: irinotecan (the “iri” in folfiri) is known for causing late onset diarrhea around day 11 of the cycle. Mine was off by half a day.

I hit rock bottom on Friday evening. It wasn’t just a bit of lingering pain, or digestive distress, or fatigue, but the whole combination of them producing an overwhelming feeling of “blah”, and knowing that my plans for the week were going south with my body.  I felt best laying in bed, any attempt to get up and move about exacerbated the blah.

After an hour or so of crying, I decided to give in to the dark side for a while.  I don’t normally talk to myself out loud, by my dark side did.  It said something along the lines of “I’m not taking any more chemo, I’m just going to lay in this bed until I die.  I’ll refuse food to help speed the process along.  Maybe some friends will visit to say their last goodbyes to me”.  It was basically a slow motion suicide plan involving NOT doing things to extend my life.  And it put a smile on my face.  I’ve said it before and I’ll say it again, living with cancer is more difficult than dying of cancer.

The interesting thing is that while saying this out loud, the more rational parts of my brain kicked in with the realization that I’d never follow through on this.  Saturday’s plans involved a tasty chocolate chip muffin for breakfast then a day trip to Vermont, and I was pretty sure both of those things would happen, and they did.  I just had to get the emotional bile that had been building up out of me.  

The moral of the story is that I’m not strong and optimistic every single day.  I’m learning to allow myself to have weak days when needed and when it doesn’t really matter.  I can tell myself “no more chemo” many times between treatments.  But, when infusion day rolls around, that’s when I have to be strong and upbeat, and say “More chemo please!  Can you put some green dye into the IV bag in honor of St. Patrick’s day?”

BHAG update

In my last blog post, written as this one is on the second day of the chemo cycle when steroids are squashing most of the side effects and blah-ness away, I set myself a big hairy audacious goal to walk or run or crawl a distance of 5K or more in 50 different municipalities.  Despite the dark days, I’ve started working towards my goal.

I wrote down a list of potential locations and came up with about a dozen mostly familiar places off the top of my head, meaning I’ll have to come up with almost 40 additional locations that I know nothing about, which is one of the points of this exercise (no pun intended).

I did a trial outing at Cathedral of the Pines in Rindge, NH, but it was a failure.  There are approximately 5K worth of trails to explore, but they were covered in snow that had been walked on repeatedly, and was now a very uneven surface with a hard coating of slippery ice.  After walking a couple laps of the parking lot, I called it a day.  It’s still on the list to try again after the snow melts.

After my bad days when I missed the 60 degree weather, I successfully accomplish BHAG #1: Devens, MA, in a snow squall with snow blowing in my unprotected face driven by winds probably gusting up to 40mph.  Devens is much windier than home, and I’m frequently unprepared for the weather conditions when I get there.

Devens was formerly Fort Devens Army Base.  The army base still exists, but only occupies a fraction of the land it once did.  The part that is no longer in use is an interesting mix of abandoned barracks, family housing for career military that are now privately owned, new construction, a technology park on one side, and what looks like a logistical/industrial park near the train tracks on the other side.

Here’s the “selfie photo or it didn’t happen” of me in front of the fence around one part that is still an army base.  This time I took care that only trees are visible on the other side of the fence.  After other photos in past years, it was pointed out that taking selfies with the army motor pool in the background might be frowned upon by the military, no matter how cool some of the specialized vehicles look.  Anyhow, in the photo note the bit of snow in the hat and that the only hair visible is grey and sticking out the sides of my head.  Ugh.

My dad did his army training here when he was drafted at the end of World War 2.  I wish my mind made the connection while he was still alive and healthy, perhaps he could have given a tour of the portions that are now publicly accessible.

It’s also great place for running in the winter, with exceptionally wide roads with enough plowed shoulder to safely run on without having to dodge traffic.  It’s where I did many of my long marathon training runs back in 2011 when I ran the Boston Marathon.  Mostly good memories, except perhaps the last mile of my first 20 mile run.  I was pretty crabby after bonking at 19 miles.

It’s also very hilly in places.  Here’s a photo of what I think are the abandoned barracks which does a decent job of showing that the terrain is definitely not flat.  There's a family story of my dad trying to walk up a hill during his training with a heavy flamethrower on his back.  Like me, he wasn't exactly muscle bound in his youth, so this story is told as if it was a comical challenge for him.  I sometimes wonder which hill this story might have happened on.

Some of the road signs are educational.  Many of the roads are named after famous battles, with a sub-sign explaining the street name.

A little further up the road I found a plaque commemorating the 100th anniversary of the Spanish Flu outbreak.  It hit the army base hard, which was over capacity.  About 2% of the soldiers ended up dying.  That’s a pretty high mortality rate for men who are young, healthy, and in shape due to army training.  Pandemics are scary when people are crowded together.  (hint: click image for a larger view where you can actually read the plaque)

And finally, a photo of photo of former military housing now service as housing for regular families.  It appears a little "foggy" because of all the blowing snow.  It's also a bit of an odd angle of the building so the garages behind it are visible.

Finally #2 (which will be the final finally) Here's the Garmin trace of my route.  3.8 miles in about an hour and fifteen minutes.  This felt like a victory of sorts, as late in 2019 I tried to go for a run at Devens and failed.  I wasn't dressed warm enough and my bladder had to be emptied every mile, which meant walking through ankle deep snow in the woods.  Such bladder problems were a sign of the not yet diagnosed tumor growing in it.  I ended up cutting my run short that day at 3.9 miles, about half of what I had planned if I recall.  Even though I went shorter and slower this week, it is still my longest walk of 2021, which gives me the highest weekly mileage total of 10.1 miles in 2021.  Hooray, things are heading in the right direction!  Just don't pay too much attention to small fluctuations in blood test results, which may have in fact been caused by the heroic effort I put in to reach my weekly goal after the setback of my bad days.

A BHAG for 2021 and an outing from 2018

What is a BHAG?  It's an acronym I read in a book some years ago that stands for "Big Hairy Audacious Goal".  It's a big goal that scares you just a little bit, and it shouldn't be a slam dunk to accomplish.

A lot of runners set a goal of running a full marathon in all 50 states.  If that's isn't a BHAG I don't know what is.  But that's a long way beyond my abilities for the near future.  A single marathon is beyond reach in 2021, in my humble opinion, but is still on my bucket list should I get a long enough remission to pull it off.

But I like the idea and came up with a modified version.  I'll run, walk, or hike 5K (3.1 miles) or further in 50 different municipalities (towns and cities) in the northeast, and I'll accomplish it by the end of 2021.  This is not easy.  It was just this past weekend that I covered 5K in a single outing for the first time since Thanksgiving day.  That left me quite tired afterwards, and didn't involve any driving to and from a different town.

To complicate matters further, it's not enough for me to just go somewhere and cover the requisite distance.  I want to take pictures and write a short description of the adventure here in the blog, so I have something to talk about besides cancer.  The "Tom in motion" blog will finally have some motion in the form of driving cars to new places and running, walking, or hiking depending on my health and what's appropriate for the destination.

There's several challenges to reaching this goal.  For starters, I'm pretty good at starting on a plan like this, but then get distracted or otherwise lose interest part way through.  My house is a museum to projects I'll get back to someday.  This would require some personal growth even if I were perfectly healthy.

This also assumes my cancer continues to shrink, side effects of treatment are tolerable, and my fitness and energy levels continue to improve.  Weather is also an issue.  It would be problematic if the best weather days are on infusion days or when I'm in the initial recovery phase afterwards.  Extreme whether like a blizzard when I'm having a good health day would cause problems with both driving and footing.

But there are many benefits to attempting to reach such a goal.  My treatment plan is to continue my chemo indefinitely.  Balancing the benefits of chemo shrinking my tumors with quality of life can be an arbitrary conundrum.  But when I have a specific goal, it becomes a gauge to help make decisions.  I can't meet my goal if I avoid all treatment because I'll be dead, so I need some treatment.  On the other hand, if the cancer is well under control but I can't manage to cover 5K, then it's time to talk about stretching out the chemo cycle or other means of making it easier to tolerate.  I'm not trying to live the most number of days, I'm trying to live the most number of GOOD days that I can.

And of course it gives me what feels like an attainable goal to focus on and write about for the remainder of 2021.  I'm quite excited at the prospect of adventure and discovery.  I can easily visit about a dozen places that I've been to before, and it's certainly in my plans to revisit them.  But to get to 50 I'll have to find places I've never been to.  And since I'll be writing about it there will need to be something of interest to grab not only my interest, but the interest of you the reader.

Finally, while this focuses me on what I can do in 2021, if I do manage to achieve this goal in 2021, it probably means I've found that balance in treatment to keep my cancer under control with good quality of life, and that will set me up for something even more epic in 2022, but I have no expectations of what that will be at this time.  Live life one BHAG at a time.

This is also my attempt to set an example of how to live well with cancer.  It's been a huge surprise how many people I've inspired since my diagnosis, but to me I'm just paying it forward as a means of thanking those who have inspired me in the past, and continue to inspire me to this day.  It's so easy to feel sorry for oneself after a devastating diagnosis, but with some effort you can have many enjoyable moments in your life with cancer or whatever other chronic ailment you have.

To give an idea of what I intend to do 50 times during the remainder of the year, here's a report of an outing to Jamaica Vermont in September of 2018.  I did a lot of such outings prior to my diagnosis, taking pictures and intending to write about them in this blog, but as mentioned before I sometimes lack the focus and discipline to follow these efforts through.  So I'm actually very happy to finally write about one of my fun adventures.

But first, a tiny bit of context.  At this time it was about a month and a half before my diagnosis of prostate cancer with widespread metastases to my bones.  The signs were there when I did this.  Symptoms of the caner in my bones were masquerading as the start of overuse injuries.  I occasionally had blood in urine, particularly after long outings such as this.  I had been to a walk in clinic, and they recommended following up with a urologist, but didn't give me any sense of urgency even though I asked how urgent it was.  And of course, the first attempts to find a urologist online were fraught with too many reviews for how good they were at performing vasectomies, which wasn't really the skill I was looking for, but I digress.  On with the report!

Here's me partway though the adventure.  Stopping to take a selfie is a great way to catch one's breath when going up a long steep hill.  If you look carefully you can see a glimpse of my ponytail hiding behind my neck.

Jamaica is the next town over from our weekend getaway in Vermont.  I ran and walked about two and a half miles to reach an abandoned road that led off into the woods to places not on any map.  The road followed a stream that's in the process of cutting a small gorge through the rocks:

About a mile down the abandoned road the road crossed a fairly wide but shallow stream.  A bit of exploring showed where a bridge used to be just upstream from this photo.  The ground was built up on both sides of the stream, but no bridge spanning the stream between them.

I got my shoes, socks, and feet wet crossing this stream, but it was a moderately hot day so cool wet feet weren't a problem.  It was down hill for the first mile to the stream, then went steeply uphill on the other side of the stream, which is where I stopped to take the selfie above.

There's a few gravel roads on the other side of the stream that appear semi-maintained in that there aren't any trees down across the road.  I found three houses back there, all off the grid.  Perhaps they're better called camps.  I don't know if people are driving through the stream to get there, or using another road that hooks up to proper roads in Jamaica.  All I know is that these roads aren't particularly suited to large trucks, so how these houses were built, maintained, and serviced (propane delivery?) are a mystery to me.  It should also be pointed out that only two of the houses are maintained.  The third is abandoned and collapsing in on itself, and that is the one that caught my attention.  For one thing, I didn't feel like I was trespassing when moving in to get a closer look and take photos.

Around the backside the outside wall of the bathroom had totally blown out, ejecting the toilet into the back yard.  I didn't know a collapsing house could cough a toilet into the yard.

Interesting that a chaise lounge is out in the backyard as if it had been recently used.  It's the first sign that the owners of this house had every intention of returning, and the reason they abandoned it is a complete mystery.  Perhaps it was because the bridge on the road washed away.  Or maybe because of a sudden death or major health issue in the family.

Our weekend getaway takes some effort to enjoy.  Besides the obvious work of maintaining two houses, there's the issue of having to pack up and drive for each visit, though going to the same place every time has its advantages.  There's some food in the fridge and clothes in the bedroom, so it's largely a matter of hopping in the car, stopping for a few groceries in route, then enjoying the place.  Every few visits a basket of laundry goes to our primary residence for washing.

Of course, Covid and power outages have made things a tad more tricky.  We do shopping at the local grocery store in Massachusetts and bring food up in a cooler.  For the time being we're just making day trips because the plumbing has been drained after the furnace quit working.  It's since been fixed, but we're waiting for mid March when the truly cold weather should be over before restarting the plumbing and restocking the fridge.

With that in mind, I can easily see this abandoned house being owned by a pair of retired grandparents, that have their children and grandchildren come to visit during the summer.  Then something happens to the grandparents, and their children are too busy with the grandchildren and work and life to come up and maintain the place, so it stays in whatever state it was left in and slowly starts collapsing as the roof fails and water leaks damage the structure of the house.  I don't see that any attempt was made to clean up the place and bring home any valuables.

I didn't dare step foot inside the house, though I could have, but it felt very unsafe and also started to feel like trespassing.  But I did put my arm in through an open window and took a picture of the kitchen:

There's dirty dishes next to the sink and an old box of borax on the window sill.  I don't know if they left it this way, or if squatters were using the place for a while.  I find it fascinating to think of the good times a family had getting away from it all in off the grid Vermont, and now that is in the past and the house is left to rot and be animal habitat.  Trees would need to be cut down before the lawn could be mowed again.  It's both sad and fascinating at the same time.

By the time I got back out our getaway, I had covered 9.6 miles and 1600 feet of elevation gain and loss in a bit over three hours.  After that outing I didn't cover more than 9 miles in an entire week until mid November when Lupron was finally starting to work and ease my pain.  I don't recall but I was probably also on opioids at the time as well.

There are several abandoned houses scattered on various roads both on and off the grid in our area of Vermont, and I like to try to visit them once a year, take a few photos, and notice the parts that have decayed in the interim.  I'd love to revisit this house as part of my 50 town challenge and see how it's changed with time, but I don't see an almost 10 mile hike in my near future.  But, I do see driving to the start of the abandoned road and being able to walk 4 or 5 miles to get to the house.  It will take a bit more training, but it feels within reach.

It's not just abandoned houses I'm after.  I know areas with spectacular scenery, a couple dams that I find interesting, and some places are just interesting to me because of connections they have with important moments in my life.  For example, in Natick there's a surprisingly large trail network behind the hospital where I get my chemotherapy.  That will probably be on the list because of the association with my treatments, even though there's nothing especially spectacular about the woods other than it being totally unexpected.

Suggestions for places that might be interesting to me and/or the readers are encouraged!

Hopefully I'll have a report on my first one or two BHAG outings by the end of next week, just before my next chemo infusion.  Spoiler alert: One will probably be Devens MA for personal historical reasons.  Life goes on despite cancer and is getting more interesting again.  I've found several fresh reasons to get up in the morning, and it feels great!

Day 860: Update, Chemo, and Genetics

 Since my diagnosis, I’ve become an active member in several online cancer forums.  My stock advice to those suffering a recurrence is that you only need one treatment to work really well.  That advice always felt a bit hollow, because early in my journey it seemed every treatment worked really well for me, and I was living a mostly normal life.  2020 was a rough year for me, with difficult side effects and treatments that either didn’t work for long, or didn’t work at all.  If only I had taken my own advice.

Things seemed pretty grim when I started on a new (to me) treatment, folfiri, which is actually a decades old chemotherapy commonly used for colon cancer.  So far 2021 is turning out much better, with a CT scan showing fewer and smaller tumors, improving blood numbers (including that pesky chromogranin-A test which was the lone voice of dissent previously), and me feeling more optimistic than I have in quite some time.  And all it took was finding that one treatment that so far seems to be working really well.

I find it amusing because there’s commercials all over TV for the latest cancer drugs and how patients are living longer and better lives because of them.  While these drugs do produce miraculous results for a minority of patients, they are not without their own side effects.  I was on one of these drugs in 2020, and it gave me side effects and did nothing obvious to slow down my cancer.  I’ve heard similar stories from other patients, where it didn’t give them any meaningful remission from the cancer, but oh yeah, it did cause their own immune system to kill their thyroid gland.  Yes, plural, because it’s happened to at least two people.

So here I am, on some old chemo drug being used off label and getting the kind of results they promise in the TV commercials.  At least so far.  I’m no longer cocky enough to assume this will last for years, though it would be very good for me if it did, and that is certainly a possibility.  But the saying goes “make hay while the sun shines”, and the sun is coming out from behind the clouds for me now.

There are no plans to stop this chemo after a fixed number of cycles.  I’ll be receiving it as long as it’s working and my body is tolerating the side effects.  As suggested above this could go on for years.  It requires a mind shift.  I can no longer think in terms of simply surviving chemo and then starting to live life again when it’s over.  Now I have to learn to live life during chemo.  This includes everything from going for walks in the woods to paying bills and fixing broken appliances.  I’ve always been good at the walk in the woods bit, it’s the tasks that are more drudgery that are the challenge. I wasn’t good at keeping up with them before cancer.

Shifting to another topic, a ton of thanks go to my wife for all she’s done to support me through this whole ordeal.  When we were married, we took a vow to stick together “in sickness and in health”, but certainly my 20-something year old self never imagined “sickness” as recurrent metastatic neuroendocrine cancer during a pandemic.  As of today I’ve been fighting cancer for 860 days.  Just a few decades ago, I’d either be cured or dead by now.

Because of the pandemic, my wife can no longer keep me company in the infusion room.  She either takes a drive back home and then returns to pick me up, making for a very long day of driving, or waits in the parking lot for hours and hours coming inside only to use the bathroom. While she’s waiting alone in the car, I’m chatting with the nurses and other patients and it generally feels like a party atmosphere by pandemic standards.

To go off on an automotive tangent, our Toyota Prius is turning out to be an ideal car for such situations.  It’s a hybrid with automatic climate control.  Simply leave the car “on” and set the heat to 70 degrees or so, and the car will figure out when to run the engine and how fast to spin the blower fan to keep the interior comfy.  It’s stunningly efficient at doing this on a moderately cold day.  In the six hours it takes to drive to the oncology office, wait for my infusion, then drive home we averaged over 40 mpg including the time waiting in the parking lot.  That works out to a little over 2 gallons of gas burned over six hours and almost a hundred miles of driving.  Our next most efficient car would burn a little over 3 gallons just driving there and back without any idling for heat.

My wife has also been doing most of the chores around the house and preparing most meals (I usually get my own breakfast, as toasting bagels and pouring cereal are within my abilities), and the menu is constantly changing as I go on and off of chemo and the foods I tolerate are different with each chemo.  Things should get more predictable with the plan to stay on my current chemo indefinitely.  I think she’s quite pleased that pepperoni pizza is not only tolerated by my digestive system, but being a calorie dense food helps me maintain my weight, and in the warped world of cancer could be considered a health food.

In all honesty, the nurse practitioner told me to avoid salads unless I drench them in dressing.  It’s all about calorie density and maintaining my weight right now.  A body that’s losing weight doesn’t heal from chemo and recover blood counts as well.  Pizza, ice cream, chili with real beef.  It’s a poke in the eye to anybody who says they beat their cancer with a vegan diet.  Usually when pressed such people admit they had their single tumor surgically removed, and then declined chemo to mop up any microscopic bits that may or may not have have been in their bodies.

Finally, let’s talk about genetics, or more specifically the genetics of my cancer.  Last fall I had a biopsy which was genetically tested at Dana Farber.  I’ve since found out that this was an experimental test, so if you want to get the same one I couldn’t say what you should ask for.  In addition to showing mutated genes, it also showed which genes that had “copy number variants”.

A quick bit of biology: Humans have 23 pairs of chromosomes.  Chromosomes are made up of genes, and as a result genes usually come in pairs as well.  There are several hundred genes that can be associated with cancer, and many fall into one of two categories.  Promoter genes are genes that promote cell growth and division.  Suppressor genes oppose the promoter genes and stop cell growth.  These genes are analogous to the gas and brake pedals in a car (credit for that analogy goes to “The Emperor of All Maladies”)

The balance between promoter and suppressor genes is important. It’s what allows our bodies to grow as children, and then maintain a stable size as adults.  When there is injury, a period of increased growth is needed for repair, followed by only enough growth to replace cells that are lost due to various causes.

When you look at my genetic report, I have very few actual mutations.  It turns out that 98% of cancers have more mutations than mine.  What I do have is a lot of is those copy number variants, which means I have the wrong number of certain genes.  My amateur explanation for this is that there is something very wrong in my cancer’s ability to repair breaks in chromosomes, and in the process of fixing those breaks it either loses genes or inserts extra copies.  And the general trend is that my cancer has extra copies of promoter genes and fewer copies of suppressor genes.  In several cases suppressor genes are missing entirely.  My cancer has a very large gas pedal while the brakes are either broken or missing entirely.

This probably explains why my cancer grows so fast, and really doesn’t care a whit about what I eat.  If you think about terminal cancer patients, they have usually lost their appetite and are losing weight until they become skeletal, yet their cancer continues to increase in size.  Think about that the next time somebody proposes that you can starve cancer with diet.  It might work for some low grade cancers, but not widely spread metastatic cancers.  Yes, I really do have an issue with people peddling diet as a cure for all cancers.

Let’s talk about some specific genes.  PTEN is a frequently mutated gene in prostate cancer, affecting an estimated 70% of patients at diagnosis.  In my case, one copy of PTEN is mutated, and the other is missing entirely.  PTEN is a suppressor gene, and is also thought to be involved in making cells stick together.

Looking at other suppressor genes, I’ve lost both copies of ARID1B, RB1, and TP53.  TP53 is important and we’ll get back to that in a moment.  These are all genes that can stop cell growth and division, and they’re missing entirely from my cancer.

Cancer is a disease of damaged genetics.  My cancer cells no longer require any external signal to grow, they just grow because they have extra copies of growth genes and lost the genes that can stop growth.  Neuroendocrine is a small cell cancer, and the cells are small because they just keep dividing and don’t have any time to grow between divisions.

If it isn’t obvious, I’ve been spending time looking up genes in my genetic report online, and trying to form a mental model of how my cancer behaves as a result of these mutations.  It’s being an amateur geneticist at it’s worse, because my genetic report only says which genes are mutated or have copy number variants.  It doesn’t say which genes are active or inactive, and it ignores that it usually requires a sequence of genes to carry out a cellular process.  As an example, I have an extra copy of a gene associated with ovarian development.  That’s probably important in ovarian cancer, but most likely the gene is inactive in prostate cancer.

But when patterns emerge that match the behavior of my cancer, it’s a reasonable theory that there is some cause and effect.  For example, I’ve noticed I’ve lost several copies of genes that are involved in cellular adhesion, which is basically cells sticking to each other.  This is necessary for cells to form organs or tumors.  It’s not helpful to have liver cells breaking off and floating around the body, but that’s exactly what my cancer is doing.  Some cancer patients have a single tumor the size of a brick.  That isn’t how my cancer behaves.  Instead it forms many small to moderate sized tumors scattered throughout my body, and I see evidence for that in my cancer’s genetics.  It was probably that way from very early on, as my prostate cancer had invaded countless bones before reaching the left side of my prostate.

It’s somewhat unfortunate, because when cancer cells stick together and remain in one place, they become good targets for radiation and surgery.  My cancer is systemic, and generally can’t be treated with radiation and surgery because there’s countless tumors to be treated.  I’d either die from radiation poisoning, or end up as a jelly fish because most of my bones would be removed from my torso.

But let’s get back to that TP53 gene and chemo (http://www.bioinformatics.org/p53/introduction.html).  TP53 has a very specific function: after DNA has been duplicated, it stops the process of division until any errors in DNA duplication have been fixed.  My healthy cells presumably have both copies of TP53 intact.  When chemo damages the DNA of healthy cells, TP53 steps in and stops cellular division until the damage is repaired, or will kill the cell if damage cannot be repaired.  As a result, growth of healthy cells is slowed, but they repair themselves and proceed to make more healthy cells.

But this is not the case in my cancer cells.  The quality control department that is TP53 has been laid off.  Cellular division proceeds regardless of the state of DNA, and most DNA damage is likely to be fatal to the cell as genes for important cellular processes are changed to gibberish.  About 50% of cancers involve mutations or loss of TP53, and that puts the cancer cells at a disadvantage to healthy cells when treatment is intended to damage DNA (radiation and some chemotherapies).

And this is potentially why a decades old colon cancer treatment is so effective against my cancer.  It works in part by damaging DNA.  So does carboplatin, and that was effective as well.  A few decades ago, when a bunch of new chemotherapy drugs were in development, I could very well have been the guy you read about in the newspaper who was about to die from cancer, but then had a miraculous recovery due to the latest in cancer treatments.

All the hype today is in the fields of immunotherapies and precision medicines.  This is generally good but it does imply chemotherapy is outdated, difficult, and useless.  My experience is the exact opposite.  The shiny new drug didn’t work for me, but decades old chemos did.  More importantly, it’s working after my cancer grew back following platinum chemotherapy, which seems to be considered the best standard treatment for neuroendocrine cancer.  When that doesn’t work or stops working, there is not a long list of second line treatments proven to work.

What all existing cancer treatment have in common is that none of them work by fixing the genetic damage at the heart of cancer.  But what if you could do that?  Viruses work by injecting DNA or RNA into a cell, and turn that cell into a factory for making more viruses.  What if a virus could be engineered to inject the missing TP53 gene back into my cancer cells?

That’s exactly what scientists tried according to the link above.  This is what a real cure for cancer might look like.  Genes would be added to or removed from cancer cells to either stop the uncontrolled growth, or make the cancer more susceptible to existing treatments.  It’s a fascinating idea.  Unfortunately in the case of TP53, the virus worked great in a petri dish, it worked great when injected into mice, but as frequently happens it didn’t work so well in humans.  Follow the link above and scroll down to section 7 for more information.

One final thought on genetics: genetic changes are random, and not all of the changes work in the cancer’s favor.  I found it interesting that my cancer has 6 copies of the CEPBA gene which is thought to be a tumor suppressor.  Obviously it’s not stopping the cancer from growing but it is an interesting detail nonetheless.  Also, I’m missing one of two copies of the XPO1 gene, which is thought to be related to resistance to chemotherapy.  Assuming extra copies would make the cancer more resistant to chemo, this seems like a rookie mistake by my cancer.  It gives me hope that my current chemo may work for a long time to come.

So to sum up: boring old chemotherapy can work as well as if not better than the latest and greatest drugs.  It all depends on the specific genetics of the cancer.  Also, cancer is not a death sentence, and failure of standard treatments is also not a death sentence.  I’m on my third chemo for neuroendocrine cancer and seem to be tolerating it well.  We’ve also learned from past experience that my cancer will bounce right back if chemo is stopped so we’ll be doing something different and continuing chemo as long as possible.  I’ve heard a handful of stories of patients getting chemo beyond the standard number of doses, and it seems in every case they’ve done quite well.

So I’m quite optimistic I might be able to get years out of folfiri, and should it fail there’s other off-label treatments that can be tried, or there might be a clinical trial.  If I do get years there may be brand new drugs to try that aren’t available today, perhaps even an engineered virus that could inject TP53 genes back into my cancer.  The only thing I’m certain of is that my ability to predict the future has been awful.