$10 for the whole thing

Man!  Around twelve years ago I started hitting the heavy bag and lifting weights.  Even though I grew up playing a variety of sports (until I got, err sidetracked with less healthy activities in high school) I had previously resisted pumping iron as being a little too meat-headish. It was therefore a pleasant surprise how much I thoroughly enjoyed getting pumped up (okay sorta, genetics has an unfortunate hand in this) while listening to intellectually stimulating works like ‘Break Stuff’ (yeah Limp Biskit).  With weights I discovered a totally fun, healthy obsession- the perfect activity for the off-running days which provided the same mind slowing, endorphin buzz along with ample justification for supersizing my McD’s french fries.  The only draw back was that I had no clue what the hay I was doing – you know like proper form – and managed to tweak the hay out of my lower back.

It got so bad I considered putting the kibosh on activities like weights, running, combing hair, brushing teeth, and wearing deodorant.  Okay I may have been using the lower back issues as a mere excuse to loose myself of those last three oppressive facets of modern living; but actually, what really bothered me was trouble doing key activities such as standing for more than 10 minutes at a trade conference for work or tossing Connor and Derek’s cute diapered butts in the air (and yes, Social Services, catching him on the way down).

Thus started a gerbil treadmill-style journey involving doctors, chiropractors, yoga, acupuncture, hanging upside down by toenails, dunking myself in heart stopping ice baths, other, repeat, on and on for @ a year. Finally I found this book called ‘Pain Free’ by Pete Egoscue and I can say without a shadow of a doubt that’s the most brilliant 10 spot I have ever spent, EVER.  A ton of things resonated with that read, besides the fact that it worked to relieve the pain while resolving the problem within the next few days and weeks.

Egoscue took a novel approach as far as I was concerned.  He talked about how inactivity versus activity was actually the cause of a lot of lower back problems. Resting could be contraindicated for most conditions; that indeed sedentary/resting in life could yield a sore back, neck, arms etc in the first place. He also put the onus on the person suffering with the pain to do something about it.  In other words, he offered some specific things (in particular his incredibly simple “e-cises”) I could do to fix the problem…with the main ingredient being that I had to do the exercises. Righteousness! As soon as I got past the idea that someone else didn’t need to fix me (this wasn’t/isn’t always easy I think for the way we have been socialized to believe medical practices work…or maybe that’s just me, dunno), life and my back got exponentially better. His rally cry was not surprisingly, “Move or Die.” This meant, maybe, I didn’t have to stop doing some of the things I’d grown to enjoy so much.

All parts of the body he argued were interrelated as a ‘gestalt’ or system. Sitting at a desk 8 hours a day with poor posture could cause the inner thigh muscles to weak and atrophy which, in turn, could cause an over reliance on other muscles which in turn could lead to injury during a physically demanding scenario; hurting a knee could generate a situation where someone starts compensating with poor form when walking, which in turn could lead to a lower back injury (just like misaligned tires causing a variety of problems with car). Curiously enough as my back got better and my form improved, my knee started hurting. I remembered that I had hurt my knee weeks before the original back pain started (and imagined I had started running like Egor or the hunchback of ND, at least subtly, which in turn led to the back pain).

As I’ve said, those 10 bones proved totally brobdingnagian, gigantic even, the best ever spent! Kind of makes you think about the relative nature of money and “value.”  $10 bucks for bowling, a movie, or big salad vs. a life changing, pain relieving solution to a problem that plagued me for the last six months? Crazy relativism at work.  Anyways, I’ve become somewhat of Egoscue missionary- giving away, letting borrow, or sending the link for the book to anyone I hear has back pain.  People who follow his advice seem to get results. For severe cases, some of my friends have even gone to one clinics (in person or online) and also seem to benefit.

So why am I rambling about this? “What’s the point already Leland?”

Besides my need to proselytize Egoscue followers and the obvious parallels to my battle with cancer (research, potential for self-initiatives, experimentation and the belief in alternative ways to solve problems) I’ve been reading things in the news lately that give me pause to think again about health as that same kind of “Egoscuian” gestalt (or idea that natural systems should be viewed as a whole). Specifically as relates to ongoing treatment for melanoma.

PooFirst off, let’s introduce some good old fashioned poopy talk into this discussion…because you know what’s a 98braintumors.com blog if I can’t drop some poo-poo-caca into the diction every once in a while.

Researchers studying the effects of Pembrolizumab (chemical name), Keytruda(commercial name) or anti-PD-1 therapy (the name I was first introduced to during a compassionate use program in LA and am still receiving every three weeks) on mice found that mixing non-responding mice with mice that were responding caused the non-responders to get better.  What was the difference? Well, eating each other’s poop of-course!

The mice were sharing intestinal bacteria by virtue of munching each other’s doodoos. Researchers surmised that such bacteria (Bifidobacterium -the good kind of gut microbes) boost the body’s natural ability to produce cancer fighting t-cells; while also offering provocative explanations as to why certain therapies only work for small minorities of patients (the ones who might harbor good gut bugs). Increasing success therefore might include a study of a person’s inner environment and prescribing probiotics.

I used to swear my old dog Blake’s mission in life was to sample every conceivable form of “waste product” on the planet before he died. God rest his soul, he was highly successful at this. I’d call for him while running and he’d come dashing out of the bushes with a load of horse, deer, coyote, dog, human, whatever tumbling out his mouth. It used to seriously tick me off, especially then when he’d tried to give me a big lick back at the car. Here’s the old guy with Conn.  You know he was looking off camera at a big pile of that brown stuff!

Blakey

Who knows though, maybe the old boy was on to something with these fecal transplants. The big goof lived to 13.5…like really old for a 100+ pound love monster.

Getting back on point, kinda, the influence of the microflora suggests there’s more to drug effectiveness than simply, um, drug effectiveness. It would be great if there was a silver bullet for everything that ails but such articles indicate that there are perhaps a complex series of mitigating factors at work.

Next let’s talk about vitiligo.  That’s what happens when you feel dizzy right? Um no. No wait, its a Hitchcock thriller my Dad made me watch but actually turned out to be cool? Nope.  We are talking vitiligo, as in that thing that M.J. (Michael Jackson) was famous for…among other things.  In hindsight it makes some sense why he chose to wear masks, if he worried about appearance.  I’ve got a mild case on my abdomen as well as chin, characterized by portions of skin losing color as a result of dead pigment cells. What’s interesting about this is that they have linked vitiligo to that drug I referred to above, Pembrolizumab.

Unlike traditional chemotherapy which indiscriminately kills cells (including the good ones). Its an immunotherapy or a drug administered to stimulate the body’s immune system to destroy cancer cells. Keytruda targets the PD-1 (programmed cell death protein 1) pathway or a protein that works essential as a shield to hide cancer cells from detection by t-cells.  T-cells are lymphocytes or white blood cells and are the soldiers pledged to the immune system.  When activated they have a variety of weapons (I think I read something 70 different weapons at their disposal – sweet!) to destroy viruses or mutant cell freaks like cancer. Sometimes however the process causes the t-cells to go after the wrong party. Researches, as relates to vitiligo, is caused by the T-cells targeting melanocytes or the cells responsible for skin color, causing vitiligo.

What’s cool here is that incidence of vitiligo in those receiving Keytruda is also linked to higher survivor rates.  As reported,

“A higher occurrence of vitiligo was associated with an objective (complete or partial) response to treatment (12 of 17 patients vs. 14 of 50 patients; P = .002). The median time to onset of vitiligo was 126 days from start of treatment.”

I had read this before regarding another immunotherapy (yervoy) and it made me feel better about a little skin discoloration; okay maybe even grateful…where before I might have been thinking “great, now this!” My attitude changed for the better. Finding out recently that Keytruda also included the same potential side effects reaffirmed such feelings.

But, in terms of thinking of things as “a whole” what I find even more interesting as I thought and looked at this further was some other research I had done related to vitiligo.  Name, it was reported that vitiligo is often a “comorbid” disorder meaning that it often occurs in conjunction with other disorders (20% of patients) such as thyroid disease, inflammatory bowel disease, pernicious anemia. I’ve had bouts with all three of these things in the last three years. Oh, and by the way, all of those things are listed as potential side effects for Keytruda.

So is the drug causing the issues or the disease?

With thyroid disorders there is pretty good data to suggest that increased levels of TSH (thyroid stimulating hormone) might provide fuel for melanoma growth (search for “Expression of thyrotropin-releasing hormone by human melanoma and nevi” and “Human melanoma cells express functional receptors for thyroid-stimulating hormone”). This data suggests if you have melanoma, you should think about a dosing supplemental thyroid hormone to suppress TSH production. Does melanoma place higher demands for TSH as part of the disease process?Furthermore I’ve read that thyroid issues can cause gut issues as well as low red blood cell counts /anemia.

But still haven’t answered the question.

Who are the chickens and who are the eggs in this story? Which ones come first?

Let’s review, cuz that might help:

  1. Pete Egoscue’s “Pain Free” kicks some serious back.
  2. My ol’ yellow dog liked to eat poop.
  3. So do white mice in cancer research studies (thank you for your service Rodents!).
  4. What’s happening in the intestinal tracks of those receiving immune therapy might make all the difference.
  5. M.J. probably wore masks cuz of vitiligo.
  6. Vitiligo might be a sign immunotherapy is working.
  7. Supplemental thyroid replacement hormone might be a great idea for melanoma patients.
  8. Vitiligo, thyroid disease, gastro intestinal and blood issues might all be caused by cancer treatment, by melanoma, or by each other…

Um, okay, that didn’t really help.

Truth is I don’t have the answers here. I know they are there, somewhere, skulking through the medical darkness, all at work somehow, just not sure how they fit together yet. My suspicion is its probably going to be obvious someday and pretty simple.  Kind of like the fish that swam around the entire ocean looking for water.

Tomorrow I have appointments- with the GI doc and then another infusion at the hospital. Gonna bring up all these parts and pieces and see what the experts think.  Gonna also choose to believe that we will eventually get to another “Egoscue-style solution” and a few simple c(cancer)-cises for $10, to fix the whole of everything.

Xoxo

Leland

PS. Its my high 20-something-ish installment of Keytruda tomorrow. Will also be applying some guided imagery to supplement the process. Thinking ill-tempered sharks with fricking laser beams attached to their heads are a great idea.

sharksdr. evil


Incline on Friday, Barfing on Saturday, Clueless on Sunday

If you research how to write blogs, you will find that almost invariably one author or another recommends the use of “Top 10 Lists.” This particular medium on the internet is prolific. Inventories of things can be useful, grab your attention, and are easier to read/write. They exists for everything from “Things to do with a Glass of Water” to “Places to use when you can’t find a restroom…” Two things that are not by the way, necessarily, mutually exclusive.

Anyways, I’m itching to pen these kinds of posts and, frankly, feeling a little resentful at the moment that I don’t seem capable.

IMG_1062The first one I’d write would be something along the lines of “Top 10 Things You Should do to Defeat Ulcers” or “Seven Simple Steps for Curing Melanoma…So Simple in fact Even Your Cat Can Do It!” These speak to me. I might even pay money for the e-books; or if feeling particularly cheap and/or lazy have our cat Leo buy them and fill me later.

Like I said though, it’s not happening.  Life doesn’t seem to be fitting cleanly into the paradigm.  Case in point has been the last few days. Friday I hit the Manitou Incline with Alan (aka ‘Grandma’ aka long time running buddy and chief weekend excursion and concert conspirator).  We haven’t done something like this in a while and it was great.

For the uninitiated, the Incline is an old railway above Manitou Springs that was washed out @ 35 years ago and has since become a popular hiking destination.  It’s got something like a 70% grade in places and you climb 2000 feet in less than a mileLooking down the Manitou Springs Incline from Barr Trail Bailout.jpg…Bad-ass…if you are slightly touched in the head or looking for a unique challenge, or, maybe in my case, both.  It’s one of the few exercises I’ve done where I consistently see stars (ah like not the sky) and, at about the half way mark, I’m usually reminded of the time I told someone I was going for a run and he responded, dumbfounded, “From what Dude?”

Either way, I’m grateful to be able to do stuff, even slightly touched stuff, and despite being @ 20 minutes slower than the last time I did it 10 years ago (we reached the top on Friday in 45 minutes), it was still awesome to be out there suffering on the side of the mountain.

Yet, on the way down something was bothering me.  I’ve had ulcers along with inflammation in the stomach for the last several years. Ulcers are basically open soars in the stomach or in my case duodenum (first part of small intestine leading to jejunum, um before the ileum) and, to use more medical terms, they can really suck. I happen to have the sucky ones. They were starting to turn on full sucky power during the meandering, three or four mile run back to the car.

Thought I had handle on these, I keep/kept thinking.

If you query on the subject you will find that @ 90% of ulcers of the duodenal variety are caused by H. Pylori bacteria.  However, a biopsy of my ulcers did not demonstrate any hp.  The doctors surmised it was treatment /chemotherapy induced.  Wish it was the bacteria.  There is a clearer path to victory in that case (heavy duty antibiotics for a few weeks and antacids).

After a few ER visits, endoscopes and barrage of tests ad nauseum, supplements, Dr visits, prescriptions yah dee ya dee ya, we really thought we had this licked.  In my case, we believed, the issue was a combination of a newly developed lactose intolerance and, strangely, a lack of stomach acid.  Taking digestive enzymes for lactose along with hydrochloric acid did the trick.

Unfortunately a couple of weeks ago the pain returned.   I realized I’d slacked on the remedy described above and got back on the wagon so to speak. However, the thing is, it does not seem to be working. And the really lousy thing is, the burning almost always leads to full blown brush fire…thus the visits to the ER.  I had one of those a week ago and within the last twenty four hours.

Yesterday it started at Connor’s hockey tryouts with the imperious urge to projectile vomit in the bathroom, timed between his shifts on the ice of-course.

I guess that’s the definition of slightly obsessed, when you are slugging it out at the ice rink to watch your son play rather than home gyrating in pain.  Either way, it was worth it to have him look up at me when he was heading off the ice and nod when I gave him the thumbs up for this performance. I’m not biased or anything but what a great kid! The effort alone was worth price of admission.

Anyways, barfing turned to copious barfing at home and severe abdominal pain.  The next six to eight hours were, as mentioned, kind of sucky.  Thanks to some prescription nausea meds (again, thanks Alan) things finally calmed down and I did not have to go the hospital.  We were to down the wire though…I was giving it a another hour before limping to the ER.

So, here I am, Sunday evening, typing this blog, feeling slightly shell shocked, wondering what to say while scrapping the rusty, dried up bottom of the barrel of faith…wishing I could summarize “it all” cleanly into a neat, attention grabbing and snappy list.

The only thing that comes to mind is that I’ve been through other ups and downs before; and, as much as the temptation is to think otherwise, there’s always an up.

What Grandma said on Friday during our slow ramble up the incline seems perhaps most appropriate,

“Everything works out in the end…so if it hasn’t worked out yet, it isn’t the end.”  

When it does you’ll find it here, next to “Top 8 Reasons Why Guys Who Pick their Noses Really are Smarter.”