Non-Mainstream Therapies: Are You Curious? Skeptical? Grateful?

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  • leggo
    leggo Member Posts: 3,293
    edited May 2015

    Light, if Stefanie gets to go toe to toe with snot nose, I hope she forgoes the handshake.

  • NineTwelve
    NineTwelve Member Posts: 569
    edited May 2015

    leggo, I have had regression from ovarian suppression plus Tamoxifen. My primary tumor shrank by half, the tumor on the lining of my lung disappeared, and the bone met has also gotten smaller. It can happen, just from taking estrogen out of the picture.

  • leggo
    leggo Member Posts: 3,293
    edited May 2015

    With the addition of tamoxifen, maybe (but a huge maybe on my part), because it also effects cholesterol metabolism (which has recently been found to affect tumor fluctuation) An ooph alone, no way, no how. Might stop progression, but will absolutely not shrink tumors. Not physiologically possible.

  • NineTwelve
    NineTwelve Member Posts: 569
    edited May 2015

    I get what you're saying, leggo, but I'm wondering, if our immune systems can't destroy tumors on their own, then how can these alternative therapies work? What is the mechanism?

  • lightandwind
    lightandwind Member Posts: 754
    edited May 2015
  • Heidihill
    Heidihill Member Posts: 5,476
    edited May 2015

    The case histories reported in medical journals from way back do show oophorectomies alone causing tumor regression. Stephanie's case could have been attributable to ovarian suppression alone or to synergies between OS and Zometa or OS, Zometa and cannabis oil, or OS and CO, or Zometa and CO, alone or together. Without a controlled study using her genes, we'll never know.

    In my case I definitely responded to Taxotere, Adriamycin and Cytoxan combined with Zometa, steroids, antihistamines, colony growth stimulating factors, anti-inflammatories and antibiotics. NED after 5 cycles and chemopausal. That was in 2007 with an initial diagnosis of stage 4. The docs pushed chemo on me and I can't really complain. It worked for me. It doesn't for everybody. Stephanie's regimen may not work for everyone as well. I wish we could find out already why certain things work for some people. The cure is different for each cancer.  

  • leggo
    leggo Member Posts: 3,293
    edited May 2015

    Nine, I wish I knew. Probably a combination of things when you throw the kitchen sink at it, which if others are like me, have a tendancy to do. Only have slight scientific clues about why it MIGHT work, but never really know anything for sure except that it DOES work.

    Heidi, I've got to do some more reading on ooperectomies as a singular treatment. Might be back later to eat my words.

  • lightandwind
    lightandwind Member Posts: 754
    edited May 2015

    Heidihill, true. Some things work for some, not others. I"m glad your choices worked out for you and that you took the path that you did because it worked. I just wish there were many more like you. Do you take alternatives too?

    There are other women, including women with stage iv breast cancer who have had similar results as Stefanie with the cannabis oil, combined with other alternatives, who have not had any conventional treatments whatsoever. Still there are those who have not responded to cannabis, and there are some instance of those whom have had progression while taking it too. So, to be clear on where I am coming from, I don't think it is for everyone, only those who have regression and continue to remain in remission while taking it. My main point really was for us to try and support each other and whatever is working for each individual person.

    I rooted around a good bit on google before I chose to have an ooph. I had read articles comparing it to chemo for sustained remission, but I had not seen reports of complete remission of solid metastatic tumors, especially 8 or 9 of them, with ooph alone.




  • Heidihill
    Heidihill Member Posts: 5,476
    edited May 2015


    I'm reading more about Stefanie^s case. Looks like she had chemo and breast surgery, then had a recurrence after 7 or 8 years in 2013. At that point she refused to do chemo again and did OS and CO instead. Chemo worked for her just like it did with me.  I hope her current strategy works just as long. I'm rooting for her.

    Light, 8 or 9 tumors may be too big a burden for ooph alone. I'd want more things in my arsenal. If it's in the bone definitely hit it with Zometa or the like.   

  • lightandwind
    lightandwind Member Posts: 754
    edited May 2015

    So if the 8 or 9 tumors were in the liver, lungs, and spine, clavicle, do you think that zometa and ovary suppression alone could cause complete regression/remission?


  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited May 2015

    Yes, there are numerous stage four women on this board, some of them NED, who are only taking antihormonals

  • lightandwind
    lightandwind Member Posts: 754
    edited May 2015

    Thanks Melissa.I was really just wondering about ovary suppression (zoladex) or ooph, and it healing widespread disease, not ogliomets.


  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited May 2015

    Many of them have widespread disease, not oligomet

  • lightandwind
    lightandwind Member Posts: 754
    edited May 2015

    Okay awesome, so there are others here who had zolodex or ooph alone, or combined with zometa, for their tx of widespread mets, that have achieved remission. That is pretty remarkable. Really makes a case for individualized care. Glad I got an ooph. Didn't even need that AI anyway.

  • leggo
    leggo Member Posts: 3,293
    edited May 2015

    With widespread mets that also involve the liver? NED on hormonal treatments only? I can't find her. What, or actually, whom am I missing? I'd really like to know. I admit to not reading that forum regularly, so I could have missed it.

  • Momine
    Momine Member Posts: 7,859
    edited May 2015

    Leggo, I think several others have weighed in on the question. "Remission" is, as far as I know, synonymous with "regression." Whether you call it remission or regression, it means that the disease retreats, sometimes even to the point of being undetectable (NED). So, based on what I read in connection with this discussion, yes, ooph and/or hormonal treatment can effect regression/remission in ER+ breast cancer, even when there is metastatic disease and metastatic disease beyond oligomets. The thing is that although this is well established, studies also show that if you add chemo to the bag, then the survival is further improved. But I do increasingly see docs starting with the hormone-deprivation (by ooph, pill or both) and holding off on the chemo. They are also beginning to use hormone-deprivation as neo-adjuvant treatment in stage 3, instead of using neo-adjuvant chemo. I think there are some studies running on that.

  • gemini4
    gemini4 Member Posts: 532
    edited May 2015

    it's my understanding that an ooph doesn't completely remove estrogen exposure, since aromatase converts body fat into estrogen even after the ovaries stop making estrogen. It's also my understanding that there are some natural (food- and herb-based) aromatase inhibitors. So wouldn't someone need to address the issue of aromatase (either with a pharmaceutical AI or an alternative AI) .... Or maintain an extremely low body fat to minimize the estrogen exposure?

  • Heidihill
    Heidihill Member Posts: 5,476
    edited May 2015

    gemini, that's what I wanted to add. An ooph or ovarian suppression may not be enough. An AI in some form or a SERM in some form has to be considered. I've been on either AIs or Tamoxifen. And yes, it does help to not have much body fat like Stefanie. Through plenty of exercise and a mostly plant-based diet I've been able to lose my chemo pounds and maintain a healthy weight.

    Vitamin D is also an important tool. I get megadoses at my onc's office during check-ups. My onc also gives me melatonin (which is not available here) to help me sleep. 

     

  • lightandwind
    lightandwind Member Posts: 754
    edited May 2015

    If I got an ooph, and I don't have much body fat then why the hell would I have been prescribed 2.5 mg of letrozole in the first place? ....especially now that I know even if I had widespread mets, I could have years of my life in remission without it!!! Years!! Years without brittling bones, pain, headaches, depression and pure misery.

    leggo, I don't think your question was ever answered. Maybe someone can help us out.

    "With widespread mets that also involve the liver? NED on hormonal treatments only? I can't find her. What, or actually, whom am I missing?"

  • Momine
    Momine Member Posts: 7,859
    edited May 2015

    Light, because your odds increase if you add the AI. But as I remember your stats, your risk of recurrence would have been low either way (could be wrong, my memory is known to fail ;) ).

    I just had this discussion with a friend who is being treated for stage 1 node-negative BC. In her case the "value added" of an AI is minimal to non-existent, and I urged her to ask a LOT of questions and get a 2nd opinion if necessary.

    In my case I had the ooph so I could go on an AI instead of tamox, because AIs have been shown to be more effective than tamox for lobular BC. I haven't looked at the numbers in a while, but I think my odds of either recurrence or death within 5 years of DX were around 50% without adjuvant treatment. 50/50 odds over 5 years are not great odds, so if the AI reduces that 50% risk to 30% or even 35% (it is in that neighborhood), you bet I am taking the AI. I am also thin (BMI around 19).

  • abigail48
    abigail48 Member Posts: 1,699
    edited May 2015

    I've been wondering that if surgery often causes lymphendma why would they term the person NED?

  • lightandwind
    lightandwind Member Posts: 754
    edited May 2015

    I don't believe that bs about odds. I know a truck load of women who have had chemo, AIs for many years, and it didn't decrease their odds of recurrence.

    Standard of care, is more negligent than I thought if they don't announce to all of their patients, and shout out from the rooftops that an ooph or ovary suppression alone can cause remissiion of widespread liver involved metastasis....for years!

  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited May 2015

    NED refers to no evidence of the disease of cancer. Lymphedema is not cancer but an unfortunate side effect, usually from surgery, especially if lymph nodes are removed. It can occur with any trauma to the lymphatic system

  • leggo
    leggo Member Posts: 3,293
    edited May 2015

    I don't think I'm on the same page when it comes to this topic. To begin with, I have a different definition of the terms. In addition, I can't find a single case of hormone positive bc being treated with an ooph alone or widespread mets (I guess the term is relative), being treated with hormonal therapy only. I suppose we're all just going to believe what we want to believe. I believe hormonal treatment and/or chemotherapy is not going to save me. I believe that there are plenty of women, like Stefanie, who have found a better way to fight this disgusting disease. Each of us have to do what we think is best with the information we have. When you're very sick, you just know what works and what makes you sicker. I think it takes a certain kind of person to think and spew arrogance and hate like ORAC. I can't take people like that seriously and I certainly feel sorry for his patients (if he has any). He clearly is apathetic to the suffering associated with end stage cancer. He hasn't walked a mile in anyone's shoes. If at some point he gets very sick, I think his days of knowing it all will likely come to a quick end....they usually do. Unfortunately, if and when that time comes, nobody will give a shit, likely not even his colleagues. He'll just disappear.

  • leggo
    leggo Member Posts: 3,293
    edited May 2015

    And Light....absolutely TRUCKLOADS. Really, really big trucks. 

  • lightandwind
    lightandwind Member Posts: 754
    edited May 2015
  • MusicLover
    MusicLover Member Posts: 4,225
    edited May 2015

    Leggo, Well said.

  • NineTwelve
    NineTwelve Member Posts: 569
    edited May 2015

    I've only been here a few months, but I agree with leggo - Normally when you see someone with multiple mets that include liver, you see a list of chemo treatments in their signature. I don't know if that's the most up-to-date protocol, or if that's the old-school way of doing it.

    So far, I only have mets to lung and one spot on my sternum (in addition to the primary tumor and multiple lymph nodes), and I am being treated with Zoladex, Zometa, and Tamoxifen. So, even though I wouldn't say I have widespread mets, I'm still getting more than just hormonal therapy. But I was diagnosed nine months ago, after the recommendations for metastatic BC treatments changed.

    Standards of care for us are evolving more in the direction that the Alternative and Complementary adherents are urging - the new paradigm is to try to avoid inflicting unnecessary suffering with aggressive treatments. Took them long enough to figure it out, but I'm glad that this is the way now, at least, at the center where I am being treated.

  • Momine
    Momine Member Posts: 7,859
    edited May 2015

    Light, how would you know if it decreased their odds?

  • lightandwind
    lightandwind Member Posts: 754
    edited May 2015

    If someone develops into stage IV cancer after taking chemo and AIs for many years, then I really don't see evidence that it did much for them....for way too many. This, side by side with evidence that chemo allows stem cells to proliferate the cancer due to the proteins in the blood emitted by the cells following; This, side by side with the evidence that there is fraud in medicine, namely cancer medicine, and there has been for decades; This side by side with the fact that cancer drugs don't hold up to their "science"; This side by side with the fact that medicine adheres to paradigms and practices that don't work in many areas, are all evidence to me that we need to open our eyes, not rattle off industry made statistics that still leave 40,000 women a year dead from this disease.

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