Seems like alternative medicine and diets never get rational airtime. Some people slam them, writing off as quackery anything non-allopathic. Others become super cheerleaders letting alternative medicine and diets engulf their identity in a creepy almost cult like fashion. Neutral patients are left in the middle with little rational, scientific based information nor sensible peer support conversations about “natural” health and healing.
On discussion boards it seems everyone’s either adamantly defending products and regimens with absurd anecdotes (quite different from sensible coping strategies) or they’re bashing the hell out things. Few readers learn anything other than propaganda for or against.
I’m a big fan of patients being proactive, whether it is about alternative or allopathic care. That’s why I felt so disappointed last week when I saw on a facebook thread patients discussing gluten-free diets. One told the other to try it, because it could cause no harm. The sentence reminded me of the Life Cereal slogan: “Ask Mikey, he’ll try anything!”
Nothing is without possible side effects, even simple diets.If I were going gluten-free here are some things I’d consider: 1. Stress. A study came out from Columbia University about the economic burden of gluten-free food. Do I have the time or money to accommodate a new diet? 2. Changes in diet can significantly alter a person’s nutritional profile. A lot of gluten-free substitutions are high in fiber. Diets high in fiber have in the past caused me horrible cramping and intestinal bleeding, followed by extra doctor’s visits, labs, and more medical bills. 3. Different foods impact the absorption of my thyroid hormone pill, which is used as therapy to prevent my cancer growth. This is a serious consideration.
There might be good solutions for each of these consequences. I’m not saying patients shouldn’t engage in alternative medicine or new diets. I’m just saying it’s naïve for us to think they can’t cause harm, especially in patients who are critically ill.
What are smart tips, lessons learned, and warning signs you have experienced with alternative medicine? Have you ever had negative side effects from herbs or diets? Do you talk to your doc about the non-allopathic care you receive? (No propaganda comments for or against products or diets please - just smart helpful info.!)
“Everything Changes is, without doubt, the most forthright, emotionally sophisticated, and plain-old valuable book of its kind I've seen.”
February 2nd, 2010 at 2:50 PM
I feel like a lurker - I don’t have cancer, but I do have another chronic illness and love your blog! If you are interested in getting propaganda-free info on traditional and/or complementary treatment options, consider asking a medical librarian for help doing the research. Many hospitals have one, and any university with medical or nursing programs will have several. We can suggest sources for authoritative, reliable information based on research, not hype. The link in my name is the National Library of Medicine/National Institutes of Health tool for locating consumer health (ie open to the public) libraries in the US, Canada, and beyond. (Yes, I’m a medical librarian, and yes, we have Everything Changes on the shelf!)
February 2nd, 2010 at 3:02 PM
Erin - No need to feel like a lurker. Did you know there are people who read this blog daily who are living with lupus, graves disease, cystic fibrosis, Chron’s and other diseases? Everyone is welcome to read and comment.
I’m such a huge fan of consumer health libraries. Glad you listed them as a resource for propaganda free research - not hype. I put medical librarians on the list of best kept secrets in the medical world. You folks are angels. Thanks for the work you do.
February 2nd, 2010 at 7:42 PM
OMG I had 2 bowls of Life cereal tonight for dinner. I know, I know healthy eating!!!
Stopped on the way home at the super market and it was on sale. True story.
I am not sure that any diet that limits one food in its entirety is healthy by virtue of exclusion of certain nutrients we need (how could cutting out a food group be good?) and I think you have to look at your motivation for trying such a diet … what are you experimenting with? what are you trying to control? is there any science at all to back it up? is the medical establishment going to change their mind in a few years? Just yesterday there was an interesting article in The NYT about vitamin D
http://www.nytimes.com/2010/02/02/health/02well.html?scp=1&sq=vitamin%20d&st=cse
I tell you the whole diet/health thing is rather confusing.
PS My opinion above does not hold true if you have a true allergy, need to go super high fat to control childhood epilepsy (the ketogenic diet actually works for many kids with uncontrollable seizures) or have Chron’s, diverticulitus or some other medical condition that requires a strict, special diet.
PPS My brother’s athsma recently went away when he gave up grains, so then again, it’s possible that a short term experiment is not a terrible thing either. He’s off the inhaler.
Sometimes I think that trying something gives you a sense of power- maybe my problems will go away if I give up wheat (Oh yeah, and I tried that in college and ate wheat free for years in the 90s before you could buy a wheat free cookie at whole foods. I still got cancer 10 years later, by the way.) But in the end, it can cause a lot of stress, cost a lot of money, and in the end do nothing to help at all.
February 3rd, 2010 at 9:52 AM
I work at Memorial Sloan-Kettering Cancer Center and I think you may be interested in an information resource, presented by our Integrative Medicine Service, that provides evidence-based information about herbs, botanicals, supplements, and more. http://www.mskcc.org/mskcc/html/11570.cfm. The site is linked to by the National Library of Medicine, and is widely respected by clinicians, advocates and patients.
February 3rd, 2010 at 3:49 PM
Ellen beat me to it - I was also going to recommend the MSKCC Integrative Medicine site.
I didn’t really use a huge number of complementary options while I was on active treatment. But I did notice parallels between my chemo nausea and pregnancy nausea, and a woman who’d used ginger and peppermint to help control her pregnancy nausea sent me some information. I discussed it with my local oncologist and the nutritionist at his practice, as well as with my NYC oncologist’s nurses. They were ok with its use, and both ginger and peppermint seemed to work well for me. A couple years after I started treatment, the local practice participated in the trials to evaluate ginger to combat nausea - and the trial results presented at ASCO confirmed my experience; ginger works for most people who try it.
One complementary treatment I didn’t expect to work - Reiki - is just about the only thing that gives me relief from the persistent numbness/neuropathy in my left foot following a 2008 surgery. It was part of a battery of complementary treatments offered at that same local practice; I tried it thinking, ‘what can I lose?’ and the neuropathy pain disappeared for several weeks. The neuropathy tingling sensations return, but I can manage them with regular treatments.
I think it’s tough for patients to sort out complementary from alternative options. Complementary options - those offered in addition to standard treatments - can give relief from side effects, and usually have some research data to back them up. But the patient is usually still on standard treatments, and the combination makes those standard treatments easier to bear.
Alternative treatments - those taken instead of standard chemo, radiation and/or surgery - often have less research to substantiate them and always make me a bit uneasy. They may work, for someone, somewhere. But I can’t help but feel that if they were more universally effective, we’d all be doing them. OTOH, at least in stage IV rectal cancer, standard treatments aren’t meaningfully successful for over 70% of patients. When modern medicine offers no other treatment options, there may be a place for alternatives in a treatment plan.
And as always - complementary, alternative or standard treatment - mileage will vary. While being aware of the possibilities, we also have to understand the risks and interactions of all of the modalities so that we don’t cancel out the ones that are working.
February 3rd, 2010 at 4:29 PM
In my desperation to feel healthy, I’ve experimented with several different alternative approaches, from diets, to supplements, to energy practioners, etc. I was younger/more naive in the beginning, but due to my experiences, I try to be smarter about things and there are certain things I just dont mess with anymore. Here’s a bit I’ve learned, and it’ll sound like just common sense, but I think due to how desperate I was/am to feel better, I just wanted to believe alt.stuff would have this magical healing quality, and ignored my instincts at first. And it’s funny, cause I’m a very careful, even cynical person, but with the lure of feeling better dangled in front of me, even I used poor judgement.
Lesson 1: It’s very important to mention ANYTHING youre taking, even if your medical drs don’t seem to care or appreciate it. That’s initially why I usually didnt mention alt. stuff I was taking, cause they looked at me like I was crazy for trying it, and some drs would just shake their head like they didn’t care. Obviously, not good drs. But nowadays, good drs want to know what youre taking and are aware of some potential reactions.
Youre right that supplements and even diets can do harm sometimes. I was under the care of a naturopathic physician (not a medical MD,though) and was taking various supplements/herbal meds. When I was having bloodwork done by other doctors, it kept coming up that my liver functioning was off, the ALT/AST were high. My drs were trying to find out why it kept escalating, and then I asked if it could be the supplements and they were like, yeah! And sure enough I stopped everything and my functioning went back to normal. Now I make sure to tell drs what I’m taking, whether they care to hear or not.
Lesson 2: Be wary of the “hardcore” alternative type,(which actually I’ve found to be many practioners) that insist they can fix you/insist their methods will work. Now I dont doubt that at least some of these people are very sincere. I’m sure it may have helped them or some people they knew, but they can’t promise it will absolutely help everyone, though I’ve heard them claim this many times, whether it’s an accupressure therapist or a medical/alternative dr promoting certain diets. In every case, these people who promised things would work, it never did, and I felt either no change, or many times felt worse!
Lesson 3: Trust your insticts about the practioner and listen to your body. Every time I had that doubting feeling, I was right. I had one accupressure therapist that pressed soooo hard, I got bruised basically, but he insisted he wasnt pressing hard, when I’m not an idiot, he toootally was, and I was sore for a week! And yea, some of them will tell you it hurts if youre “blocked”, but seriously I know the difference and if you didnt say “ow”, he kept pressing harder and harder,until you had pain, and then insisted, “See?..you’re blocked”… obviously not right…he also said you had to “commit” to the sessions 3x a week for it to work, and granted, as with any therapy or exercise even, it takes some time, but this stuff is always expensive, so you have to be leary of people just trying to take your money. Trust your gut feelings.
I’ve also had negative reactions to the diets I’ve tried. I have felt much worse on some of them even though the practioner would sware avoiding yeast,sugar, dairy,gluten, processed foods, etc would have to work. And yes, it’s typical for your body to not feel so great the first week or so, but should improve after that, and I kept getting worse. Nausea, stomach pain/upset, fatigue, and low blood sugar occured and werent getting better. When the dr was unwillngly to bend his approach even though it was clearly not working for me, I stopped seeing him. He even didnt return my calls when I explained it wasnt working.. so yeah.. shady…
And like Kairol mentioned above, the stress of the diet impacts things too, and I think for me personally, outweighs the intended benefit. For me, I feel so awful all the time, that simply having to cook/prepare more food, was taking way too much of a toll on me. Also, financially, it was tough. And yea, though I know tons of sugar isnt the best, dessert makes me really happy, and not being able to treat myself to something was just torture. And honestly, my stressed out, unhappy mental state during the diet, plus the fact I was feeling sicker, made the diet just not worth it. My body was telling me to stop. I don’t care how much people or the dr said it should work. So since then, I just try to balance things the best I can, and it may not be the “perfect” diet according the to hardcore health fanatic, but it’s not bad, & my body feels much better this way.
Lesson 4: Get your practioners from reputable sources, and if possible, (this is something I’m doing going forward), try to find a real medical doctor, that also is educated in alternative practices. The one doctor/alternative guy I found who did the bad diet, was off the internet. Typically I would never trust that, but there was an article on him in Discover magazine, some TV appearances, so I thought I could trust it, but no, and when i met him, I had doubts.
Now I’m so frustrated/distrusting, I’ll only go with doctors who I know for sure are real doctors. I have two I just started working with. One is an internist I found through the Chronic Fatigue Association Conference, who also does research. When youre trying his supplement regimen, he tests your blood every 3mo, and he also spoke with my oncologist directly, without me even asking, to make sure it wouldn’t affect the cancer. Another doctor is also a real internist at a local hospital, who also does more “research based” alternative testing. Both of them have been careful not to promise cures and are open to adjusting approaches if your body reacts negatively.
Sorry so long, didnt intend on that, but I wanted to give things some context. Ha, typing all of it out, sounded like really “duh” kind of stuff, and like I’m the most naive/gullible person in the world, but I sware, it’s funny cause i”m really not like that..
February 3rd, 2010 at 5:13 PM
On the MSK website (mentioned above) there is also a good video explaining the difference between complementary (evidence based) and alternative (quackery) therapies: http://www.mskcc.org/mskcc/html/96286.cfm
Personally, I find it sad how many people who are diagnosed with cancer suddenly become so desperate they are willing to suspend logic and reason and put their faith into unproven and potentially harmful treatments - I’m not talking about people turning vegetarian, exercising more, taking ginger to combate nausea etc. I’m talking about people who waste thousands of dollars travelling to countries like Mexico where snake oil salesmen who pray on the desperate tout their cancer ‘cures’. E.g. stem cells treatments (ironically, these can actually CAUSE cancer in some cases), baking soda injections, quark diets etc. etc.
February 3rd, 2010 at 10:55 PM
I just wanted to add that Acupuncture has really helped me. I agree with Tara that alternative practicioners + MD can be a great combo, but MDs who go to acupuncture school (depending on the acupuncture school) often need fewer hours than the acupuncturists w/o an MD, so their acupuncture training is not actually as good.
Since I have epilepsy and the risk of seizures always present, I NEVER TAKE herbs- they just dont know enogh about how they interact w/the medicine I take not to mention whether they lower the seizure threshold. I also don’t take any SUPPLIMENTS without my neuro telling me it’s OK. I always weigh the risks with the benefits…
February 3rd, 2010 at 11:55 PM
I forgot one reference that can help people trying to evaluate some of the many diet and supplement options and their potential interactions with chemo - the online peer-reviewed journal Nutrition & Metabolism, found at http://www.nutritionandmetabolism.com
Unlike many other medical journals, this one is open access - articles are searchable and available in full without charge to everyone.
Many of their articles aren’t specifically cancer-related, but all of them discuss the nutrition and metabolic effects of various things. It’s a tremendous resource.
February 4th, 2010 at 12:46 AM
Three cheers for the online integrative medicine resources from Memorial Sloan Kettering. I list them as a resource in Everything Changes and am glad to hear so many of you recommend it as a trusted resource too.
Tara raises an excellent point that I think is worthy of it’s own blog post in the near future: Do you disclose to your doctor when you are taking herbs, vitamins, alternative medicines? I confess that I do not always do it because I’m afraid my doc will think I’m a quack. Yes, I’m hanging my head in shame because I know it is medically dangerous and I need to change my ways.
I also got thinking about Alk’s comment that some people do need these “alternative” seeming diets because they have actual allergies or diseases for which diet is the treatment. I’d love to talk to and write a post about people with diagnosed Celiac’s disease. I bet that many are glad about the spike in awareness of gluten-free diets and happy about the ever increasing availability of gluten-free products and labeling. I do wonder though if any of them get pissed of that their medically necessary diet has become the newest fad and that scores of people are finding it kinda glamorous to suspect they have a disease that is really pretty life altering and probably not so much fun for those who actually have it.
March 24th, 2010 at 7:16 PM
Living a life of gluten-intolerance or with celiac is by no means glamorous. I discovered gluten as the source of my IBS while still in medical school and have haphazardly avoided it until I moved to the Midwest. I now live entirely gluten-free and it is truly a challenge, especially when eating out. I am constantly checking labels, and find I eat healthier because I am substituting whole foods in place of those that are processed. I know when I’ve been “contaminated” by symptoms I subsequently endure, some of rapid onset and others delayed. This contamination isn’t always due to food — it can the result from medications (brand name and generics are not always alike), both prescription and over-the-counter, as well as nutritional supplements.
“Gluten-free” is the advertising catch phrase of the moment, which may appear tiresome and fad-ish to some, but to those of us who avoid gluten due to sensitivity, it’s a god-send.