Alternative Treatments And More

Here is Part 2 of the Medical Daily article about me:  Cancer Patient Recommends Medical Marijuana and Other Alternative Treatments.  You can read Part 1 through my previous post, if you missed it.  In my opinion, Part 2 is not as well-written nor is it as interesting as Part 1, although Part 2 will appeal to those who favor pragmatism over the philosophical.  This piece presents my single most important advice to newly diagnosed cancer patients, my views on alternative treatments and my criticism of Memorial Sloan Kettering, the #1 cancer center in the country.  Please understand and respect that the views reflected in this article, although not necessarily thoroughly and accurately reflected — as well as those reflected in this blog for that matter — are my views and my views alone.  Other cancer patients obviously have their own opinions.  Read it all with a skeptical eye.  If you’ve been fighting cancer for any period of time, then you would agree that there are very few right or wrong answers, that so much of this cancer fight, war, journey or whatever metaphor you’d like to use is based on instinct, intuition and guesses about what to do and who to see to increase the quantity of your life while maintaining as much quality of life as possible, all within a world of too much, and often-times conflicting, information for which there is little to no science.  It’s all enough to drive me insane — never mind the part about having cancer. 

I wanted to provide a few annotations to this piece.  For those who are interested in what supplements I take on a daily basis, here’s the list:

  • curcumin (2500 mg, split over 2 doses
  • Vitamin D (4000 IU)
  • PSP (a variant of PSK mushroom extract) (4500 mg split over 3 doses)
  • Artensunate (1 capsule)
  • Cinetimdine (400 mg, split over two doses, although I’m considering increasing this to 800 mg based on the views expressed in the Colon Club forum)
  • Liquid bovine thymus extract (ideally 10 drops three times a day but I frequently forget this)
  • Green tea (when I remember to drink, I drink a lot)

All of the above has been recommended by my integrative doctor, Dr. Raymond Chang, author of Beyond the Magic Bullet and someone who was recommended to me by my oncologist when I asked him for a recommendation for an integrative doctor.  In truth, I’m dubious about whether any of the above works, as is my oncologist, but my oncologist doesn’t believe it’s causing me harm or otherwise interfering with the chemotherapy, so he is okay with me continuing these alternative treatments.  As I state in the article, I believe alternative treatments, in combination with conventional treatments, is more about the psychological benefit rather than any actual physical one.

I have also been experimenting with cannabis oil (i.e. medical marijuana), which is legal in the state of New York.  Dr. Chang doesn’t make recommendations pertaining to cannabis because there is no human science on this.  The only science that exists with respect to cannabis involves test tubes and mice.  Because of its current illegal status under the federal laws, it’s unlikely that human studies will be conducted any time soon.  There is certainly lots of annectodal evidence about the power of cannabis, although I’ve yet to meet a person for whom it has been the magical cure-all.  The problem with annectdoal “evidence” is that at some point the stories that make up that evidence take on the quality of folk lore, passed on from one person to another to another and the truth becomes muddled.  I have met some for whom it may have had some tumor retarding effects. I’ve also seen at least one instance in which it arguably hasn’t made a difference at all.  The funny thing is you never hear from the people for whom it didn’t work at all.

People say that if one is to use cannabis for those tumor retarding properties (and not to deal with the side effects of chemo), one must use the oil that is extracted from the cannabis plant; so no smoking, edibles or vaping.  For colorectal cancer, they say you need to get oil that is at least 80% THC and ingest 1 gram a day.  That kind of oil is extraordinarily potent, and 1 gram a day is a LOT.  I don’t think even those who are interested in marijuana recreationally would find that kind of oil appealing.  My experimentation has been very limited because honestly the psychological effects and fatigue have not been pleasant, even with just the absorption by my body of a miniscule amount, and by miniscule I mean a half grain of rice.  I know the goal is to build up tolerance but the process of building up that tolerance may be intolerable to me, especially when the potential benefits are dubious.  I’m working on it.

And finally, I wanted to elaborate on my criticism of Memorial Sloan Kettering.  Many people love MSK and are happy there.  I just must be friends with an inordinate number of people who don’t and who are not.  And obviously, so much depends on the oncologist.  It’s not that MSK doesn’t permit alternative treatments; it’s just that they on the whole take a very conservative and restrictive approach.  The institution is so large that’s there’s a real danger of getting lost within the system.  I say this now, knowing that I may very well end up at MSK eating my words because they are undeniably at the forefront of cancer research.

Ultimately, cancer, as is true with life in general, is a very individual and personal journey, filled with lonely choices, from the alternative and conventional treatment decisions we must make to the doctors and institutions with which we choose to align.  Each of us must make our own choices and find our own equally lonely peace with those choices.

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1 Comment (+add yours?)

  1. The Astonishing FartMan
    Feb 25, 2015 @ 16:01:24

    You’re so right that it is vitally important to have an onc who is paying close attention.

    In the vein, here’s my saga:

    My first onc (who shall remain nameless and is affiliated with a medical school teaching hospital that shall also remain nameless) seemed like a nice guy–at first. I liked him a lot. As Patty Hearst might have said, “It’s hard not to like the person who seems to hold your life in his hands.” Then as time went by he kept screwing up by not following through.

    I don’t know if he was lazy or just too busy.

    First it was little things, but eventually he failed me entirely. The first time I met with him, I asked if he would refer me and my wife to a psychologist or counselor to help us manage the emotional aspects of my situation. He said, “Sure, that’s a good idea.” But then he never set up the referral. Okay, no big deal. I can work that out for myself.

    Then he screwed up several times with follow through on the changes we made to my chemo cocktail. When the dexamethasone steroid dose in my chemo cocktail was sending me up the walls, we agreed to gradually lower it beginning with my next chemo cycle. But at my next infusion cycle, I discovered that the dex dose had not been cut. He forgot to submit the order to lower it.

    The same thing happened when we decided to discontinue oxaliplatin because I was having severe neuropathy that was not resolving between infusions. But at my next chemo session, I noticed the nurse was hanging the oxy bag, and said, “Hey, wait a minute. I’m not supposed to be getting oxy anymore.” She called my onc, and once again it turned out that he had failed to enter the order on my infusion prescription.

    The breaking point:

    Shortly after my first liver surgery (a complete right hepatectomy), I developed a constant severe pain in my right side. I told my onc about it every time we met, but he dismissed it as just typical post-surgery pain that would eventually go away. My pain was getting worse instead of better. Finally at my final chemo cycle, I insisted that we needed to find out what was causing the pain. He said, “Well, after we finish this last chemo cycle we’ll be doing a scan and that should show us if there’s anything wrong.” After the scan was done, I specifically asked my onc if the radiologist’s report showed anything that might be causing my pain. My onc said, “Nope. Nothing unusual. And no sign of cancer.” I was relieved that no cancer was showing on the scans, but still very concerned about the worsening pain. So I got a copy of the radiologist’s report to read it for myself. As it turned out, I had a softball-sized fluid collection (sub-hepatic fluid collection) that had developed as a consequence of the liver surgery six months previously. I emailed him, and said, “Hey, doc, what about that fluid collection? Could that softball-sized thing under my lower right rib cage be contributing to my pain?” He was like, “Oh, yeah, that. Hmmm?”

    It was obvious he had not even read the report.

    He said, “Well, it’s almost certainly just a seroma (i.e., lymphatic fluid), which is a common non-serious side-effect of abdominal surgery. It should re-absorb and resolve by itself over time.”

    By then, I was quickly losing confidence, so I started doing my own research, which indicated that a simple seroma would not take six months to resolve. My research suggested the problem might be a biloma (i.e., a fluid collection of bile leaking from biliary tree in the liver). A biloma is potentially a much more serious problem, and should be drained ASAP. So I started bugging my onc about whether he was sure it was a seroma and was not a biloma. He said, “No way it’s a biloma.” Eventually he said, “but we can drain it if you want to.” So after much more back and forth that took another couple of months, he never did follow through with a proper referral to an interventional radiologist to get the fluid drained. I had to go through another doctor to get a proper referral. When the interventional radiologist stuck the big needle in me and started sucking out the fluid, his first words were “Oh my god, it’s bile! You’ve got a bile leak!”

    To make a long story less excruciating, as a consequence of my onc not properly diagnosing and promptly treating the fluid collection, much of the biloma fluid had solidified, essentially creating a permanent two inch gallstone-like formation inside my liver capsule. (It was not really a gallstone, because a true gallstone forms of solidified bile inside the gall bladder rather than inside the liver.) This stone-thing is painful in itself, but the inflammation associated with the solidified biloma spurred growth of adhesions that permanently fused parts of my small intestine to my liver capsule.

    As all of this gradually became know to me, needless to say, I was not pleased. When I fussed-very mildly-at my onc about how all this had gone down, his response was to send me a very legalistic letter telling me he would no longer be my doctor. This was at the very time when I was recording rising CEAs and (as I would learn only later) was in the process of growing a new met in my liver.

    Thanks, doc!

    I was pretty sure my rising CEAs–although still barely within the normal range–were indicative of a recurrence, so I was desperate to find a new oncologist. I tried to get myself into MD Anderson, but because I was officially NED (no evidence of disease), MD Anderson would not take me. Finally, after begging, pleading and recording a CEA just a shade above normal (3.1), an onc at MD Anderson agreed to take me as his patient. Even so, because I was still officially NED, it took another 4 months to get MD Anderson to do a workup. By then, my CEA was 12 and a scan showed a 2.7 mm met growing on my liver.

    All’s well that ends well. My doctors at MD Anderson have been great. Both my surgeon and my onc there are straight shooters. The MD Anderson surgeon cut the new met from liver, and I recovered rapidly. After that surgery, my MD Anderson onc openly and honestly discussed chemo. He said, “I will give you chemo if you want it, but I don’t think it will change your odds enough to justify the suffering.” So we decided not to do more chemo. My choice.

    Three years later, I’m still here, still NED, still getting clean scans, and still with CEAs in the middle of the normal range. Yes, MD Anderson is a bit of an assembly line, but everyone there, from the housekeepers to the doctors, is very caring and super competent. They saved my life.

    For a tongue-in-cheek, semi-fictionalized account of the above saga,

    click this link:
    http://ow.ly/JEupZ

    and then click this link:
    http://ow.ly/JEqRw

    P.S. For alternative therapies, I’ve put my hopes in the “magic” of grape seed extract.

    http://www.sciencedaily.com/releases/2014/02/140214092004.htm

    Tried the maryjane, but like you it mostly makes me listless, absent-minded, and antsy, all at the same time.

    Notwithstanding the whining tone of my comment, I hope you are hanging in there okay, and getting some joy out of life.

    Reply

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