Come join others currently navigating treatment in our weekly Zoom Meetup! Register here: Tuesdays, 1pm ET.
Fill Out Your Profile to share more about you. Learn more...

Anyone Stage IV Doing Complementary Therapies or Holistic along with Medical Therapies?

Options

Has anyone looked into any other therapies specifically Jane Mclelland or Thomas Seyfried or the metabolism of cancer? Would love to connect.

Comments

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,036
    Options

    I am sorry that no one has responded. Over my 12 years on bco, I’ve noted that although we often discuss complementary treatments to reduce side effects and perhaps to boost our immune systems (outside of the complementary forum) bco is not the best resource if you are interested in those approaches. Have you tried Facebook groups or perhaps websites that focus more on complementary and alternative treatments. I don’t want to discourage you from seeking information but my experience is that bco tends to skew highly conventional. Take care

  • luvdbyhim
    luvdbyhim Member Posts: 189
    Options

    Thank you! Yes, I am on these other FB groups but wanted to know if anyone here was doing this PLUS conventional and how they were making out. I am doing conventional treatments and wanted to know how others that were doing both were making out. There was another thread from a few years ago but has not had any recent activity so I thought I would make a post. Thanks for reaching out.

  • more_cowbell
    more_cowbell Member Posts: 6
    Options

    Hi! I'm new here, though I've lurked for a number of years. I have an MO (Medical Oncologist/real oncologist) and I have an Integrative Oncologist. They have an Integrative Oncology division as part of their practice. I take many immune boosting supplements, Subcutaneous Mistletoe Injections (do this at home), as well as Honopure and Dim-Pro, for assistance in encouraging my body to metabolize estrogen down the "good" metabolic pathway vs the "bad" metabolic pathway.

    I had numerous and extensive metabolic testing, a complete deep dive into my nutritional genomic sequence, as well as vitamin, mineral, and testing of all hormones, including stress, dopamine, seratonin, thryoid, you name it. Found out I have extremely low levels of melatonin, so I am also on a melatonin supplement. No wonder I've always had trouble sleeping! My cannabinoid system is also out of balance, so I take an extremely low dose Marinol and CBD oil.

    I'm on my standard treatments, too. I am fortunately feeling great! I enjoy being able to be an active participant in helping my body to help itself. It helps me feel like I have some control over all this.

    I've changed a bit how I eat. More mindful of gluten intake, sugar (even naturally occurring ones in fruit), and carbs. Hardly drink now, although I had some wine last night out of the blue…more than I should have and I am currently feeling guilty about it! 😅

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,036
    Options

    more cowbell,

    I didn’t want to leave your post unanswered. Other than a brief foray into juicing shortly after my dx, de novo, I pretty much went back to an all things in moderation diet. Now, I eat whatever I want, when I want since I’m just trying to keep weight on. I do use cannabis, high THC, in the evening so I can get a solid meal in. I’ve had 12 progression free years (single bone met) so whatever is keeping my disease at bay, I can safely say it isn’t my diet.

    We have had stage IV members try a wide variety of diets, protocols, regimens, etc. though I am not aware of who is doing what currently. You can try the search function to see posts about anything you’re specifically interested in.

  • more_cowbell
    more_cowbell Member Posts: 6
    edited May 10
    Options

    Hi @exbrnxgrl ! I think you meant to tag @luvdbyhim, since she started the thread asking the question. I didn't realize how old the thread was until I replied!

    I'm an ex 3 sport athlete and played volleyball in college. I LOVE getting under the hood with anatomy and physiology, so I've always been a nerd about this stuff.

    I still run (no more half marathons and triathlons though LOL), bike, lift, do trampoline classes, etc., and want to keep myself in as top form as I can while I can! You can take the girl out of the sports, but not the sports out of the girl!

    Believe me, I'm no dietary saint either. I own a luxury travel agency and eat and drink my way through Europe most summers. Hahaha!

    Definitely don't believe my diet caused this either. Who knows what did. It's a mystery. I like to say I'm unique. :-) I'm the first in my family to ever have breast cancer and I don't have a strong history of cancer of any kind, and I got BC when I was 29! My recurrence was at 44, now I'm 47.

    @luvdbyhim, for me, Integrative approaches are more about who I"ve always been, rather than something I want to be. Thanks so much for your insight exbrngrl!

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,036
    Options

    Nope, my reply was to you, more cowbell. Not sure about tagging. Do we do that here? Sounds as if your diet/lifestyle takes many things into account. Take care

  • more_cowbell
    more_cowbell Member Posts: 6
    edited May 10
    Options

    Not sure…that may be a moderator question. I'm new here. I just know i keep getting notifications that I've been "mentioned" by you. I don't do Facebook, or other social media, and I've never joined a forum before, so I apologize if my "tagging" terminology is incorrect. I also didn't ask anyone a question. I was responding to an old thread that I didn't realize was from 2021.

    Thank you, and best wishes for health!

  • luvdbyhim
    luvdbyhim Member Posts: 189
    Options

    I got notified that you both chimed in! LOL, I am not sure diet plays such a huge part as cancer patients make it out to be and at this point of my journey, I wonder if it is just our feeble way of trying to control one aspect of the out of control of having cancer? I mean I have been told Mediterrean diet is the best for cancer. Well, in my family - the prior 3 generations- it surely didn't help. Several died of cancer. Plus that would mean that anyone living in the Mediterreanian would not have cancer, and we know this isn't true. The same with vegans, health nuts, carnivores, ects…all of those diets people on just this forum have been on and STILL got cancer.

    I also never smoked or did drugs, and I drank a glass of wine maybe 2 times per year.

    I was just asking to see if anyone was following Christ beat cancer, or Jane Mclelland how to starve cancer. They are about the metabolic pathways ect of cancer.

  • tougholdcrow
    tougholdcrow Member Posts: 99
    Options

    @luvdbyhim. There's a joke in our family that the people with the unhealthiest habits live the longest, while the healthiest ones die young of cancer and heart disease. My grandmother smoked two packs a day all her life and died at 86. There is one thing though: very few people in my family drink alcohol, and maybe that is protective.

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,036
    Options

    Nutrition… I believe it does play a role in our health but , in terms of disease, it guarantees nothing. Folks are often upset when after years of clean living and eating, they are dx’ed with cancer or other diseases they believed their diet/lifestyle would prevent. I think cancer is unbelievably complex and although there are things, some proven but many not, we can do to lessen the chances of disease, those things are just pieces of a bigger puzzle that is still incomplete.

    Tougholdcrow, I also come from a family where alcohol was rarely consumed. However, it had no preventative effect as we have many family members with cancer. It’s tempting to try to come up with pat explanations and clear connections between lifestyle and cancer but cancer itself seems far too complex to be reduced to something that happens or doesn’t happen based on diet/lifestyle. Yes, you can try to tip the odds in your favor but it seems that it is far more than diet/lifestyle.

    Please note that I am not advocating for a wildly unhealthy lifestyle. I am simply saying that special diets, protocols, and regimens are not proven nor guaranteed to prevent or cure cancer. We had some stage IV members who were into Jane Mclelland a while back. You can search this site to read about their experiences

  • luvdbyhim
    luvdbyhim Member Posts: 189
    Options

    @tougholdcrow How about it? My grandfather smoked pall mall for decades. Ate eggs, bacon, toast with butter and jelly, juice and coffee as far back as I can remember. He had slight emphysema and stenosis in his neck. Died at 97 and not on any heart medicine, diabetes, ect. Interesting about the alcohol? Or maybe the alcohol keeps the body too busy to be mischievously making cancer. LOL

    @exbrnxgrl - I will search threads more thank you! Her theories are quite interesting. I do agree about the diet. I mean I think there are some foods that can exacerbate side effects from some of the meds. So if you went crazy on those it would def have an effect. You are right it is so complex! I do get a giggle when people tell me that sugar eats glucose so I should completely cut out carbs. I said hmmmm, did you know it also eats protein and fat. So what do you suggest I eat?

  • AJ
    AJ Member Posts: 226
    Options

    @luvdbyhim, Chris had colon cancer that was “cured” by surgery. He turned down chemotherapy and did his diet stuff. He encourages people not to get chemo. I don’t think he’s had any special training to speak with such authority

  • threetree
    threetree Member Posts: 1,465
    Options

    Back when I first joined this forum in about 2019 or so, I read that even though Chris's colon cancer was stage 4, it was a specific kind that allows for a specific type of surgery, and that 90+% of the people with that kind of cancer, who get the surgery, survive and are "cured", i.e. in most it never returns. My understanding is that he did nothing special other than get the recommended surgery, and that all of his diet recommendations and more, really had nothing to do with his survival. It was just something I read and I have no real expertise here, but I wouldn't get all excited about his "method".

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,036
    edited May 13
    Options

    threetree,

    Your comment was interesting and brings up something to think about.
    I have 12+ progression free years with mbc (de novo), never had chemo, drugs like Ibrance and Verzenio had yet to be approved and am currently on no treatment at all after over 11 years on one AI or another! Would I recommend this course of treatment to others, advise them to follow my path, write a book? Oh, heck no! My experience is mine alone and even the best oncologists can’t say why/how I have done so well. Top that off with my stunning lack of medical training and no clinical expertise (I’m a retired teacher) and it would be arrogant of me to claim I had figured out a way to beat my stage IV cancer ( Caryn Beats Cancer!). One person doing well does not equal beating anything .

    I believe that many complementary practices can enhance overall well being but I have never seen any substantive data to support alternative cures for cancer. There is anecdotal evidence a plenty but an anecdote is just that. I am not opposed to the the idea of alternative tx but there would need to be clinical trials to prove both its efficacy as well as any side effects before I considered it. I was steeped in the world of educational research for many years so although medicine is a different field, I’m still pretty data driven in terms of tx decisions. I also understand that some people are not and that’s fine too as there are multiple approaches to almost everything in life.

  • moderators
    moderators Posts: 8,282
    Options

    Hey @more_cowbell! It sounds like your notification settings might be configured to alert you whenever you're mentioned in a post. If you'd like to adjust this, you can follow these steps: How to update your community notification preferences.

    Hope it helps. Let us know is you have questions!

    The Mods

  • tougholdcrow
    tougholdcrow Member Posts: 99
    Options

    @luvdbyhim @exbrnxgrl @AJ @threetree I think you are all very wise about this and I'm with you. At this point, I'm putting my faith in medical science even if it's not perfect. (In fact, there was a rather major error made in my case which hopefully didn't do me any great harm, but could have.) I spent some time reading back through people's stories on this site, and I can't say that those following special diets or seeking alternative treatment seemed to fare any better. (Some of these stories were so sad that I cried—the hopes, the fears, and the tragedies.) This is an extremely small sample, of course. I'm not going to take up a two-pack a day habit just because gramma lived to 86, but on the other hand, moderation in all things is a pretty good principle, physically and spiritually, as the sages have told us for thousands of years. The Middle Way. There is a lot of interesting preliminary scientific research on diet, circadian rhythms, cannabis, etc etc, but I always ask myself, does this person or group have something to gain (ego? profit?) by promoting these findings? I know from my own habits of mind that I feel somehow in control of a situation if I read a ton of stuff, as if somehow I'll be the master of the universe and defeat my own death if I know everything, but of course this is an impossible dream, an illusion. There are some good scientific indicators of why some people do well: oligometastatic, HER2+, de novo, post-menopausal, etc., but at the same time, so much is unknown. The great unknown, where we all live, but here is a beautiful day.

  • AJ
    AJ Member Posts: 226
    Options

    @tougholdcrow , yes, I agree totally. Eating a healthy diet and exercising to the extent of your ability will help you handle treatments but I’m very skeptical about claims made by Chris Wark and people like that. I know that our medical system has big flaws but when I see my oncologist, I know that whatever treatments she prescribes have been thoroughly researched and evaluated.

  • malleemiss251
    malleemiss251 Member Posts: 411
    Options

    I get very angry when I see people making money from other desperate, scared people. In Australia we had an infamous case of an individual saying she had cured her brain cancer through diet. She sold books about it and people followed her recommendations. Some even left their medical treatments. It turned out she never had cancer and was convicted in court. I must be very naive because I cannot comprehend how someone can do that to other people. I know everybody needs to make their own choices about treatment, but they should be informed choices, not choices made because of a scammer.

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,036
    Options

    tougholdcrow and AJ, I agree with both of you. Therefore the Caryn Beat Cancer book is officially off the table 😂.


    malleemiss251, yes, it is all too often the case that some cancer patients in desperation or unfounded hope spend huge amounts of time and money on some of these protocols. Are some “cured”? Well, some do survive and may never have a recurrence but unless those results, using the same protocol, consistently delivers the hoped for results, then one can’t claim the protocol is the cure. There is lots of money to be made in the alternative tx realm and some who offer alt tx are not above taking advantage of those who are desperate. Some people, hopeful and optimistic, have said that I am likely cured (yes , even here on bco). But my mo wouldn’t say that, particularly since there seems to be no discernible reason. Yes, I am oligo metastatic, which is a partial explanation but I have not had aggressive tx. I am simply going to stick with lucky outlier .

  • tougholdcrow
    tougholdcrow Member Posts: 99
    Options

    Long ago, I volunteered with an organization that helped AIDS patients. Often, they'd have cupboards filled with alternative medicines that didn't help at all. There was a lot of woo woo medicine sold to desperate people, sometimes doing more harm than good. What helped was activists who demanded government action and a big scientific effort to cure that complicated disease. And now HIV can be really well controlled with antiretrovirals and it happened pretty fast. That's science, not woo woo. I think that is where we are heading with breast cancer research. Unfortunately, we also live in a world where many distrust medical science.

  • threetree
    threetree Member Posts: 1,465
    Options

    Exbrnxgrl - I agree with you re just about everything you said up above. I do some things like green tea, a couple of supplements, etc. "just in case" , but I don't have any sort of faith that that kind of thing alone would ever "cure" me. Some of that stuff might help a bit, but it's not anything more than that from what I can see. There are just so many factors that go into any one person's cancer that I'm not sure there will ever be one sort of answer for everyone.

  • luvdbyhim
    luvdbyhim Member Posts: 189
    Options

    All of you above - completely agree with you! I was wondering about some of the complimentary supplements ect to help with side effects of meds. I have no grand illusion that I will win against the cancer. I may go a few rounds and knock it on its butt but it will get up swinging and eventually win.

    I also agree there are a ton of people out there selling potions and other nonsense saying they cured themselves of cancer. Or even if you take my potion you will never get cancer. I am on a few cancer facebook groups and I always get a giggle out of a Stage 1 breast cancer patient saying they have cured themselves of cancer… okay, you took supplements, did surgery, radiation and chemo. Uhm you 6 months out talk to me in 10-15 years to see if you are STILL "cured."