I may decide not to do chemo and radiation

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  • AlaskaAngel
    AlaskaAngel Member Posts: 1,836
    edited September 2014

    Thanks again, Beesie, for providing the statistics earlier for standard treatment for naturalhealing to consider. If conventional treatment practitioners ever get serious about providing direct comparison between chemo-treated patients who can demonstrate a patient history of good health habits before and after treatment and chemo patients who demonstrated a history of poor health habits before and after treatment, instead, that would provide meaningful information.  Then we would have a way to tell what the benefit of chemo is, instead of making assumptions about it out of fear, intimidation, and bias.


     

  • wrenn
    wrenn Member Posts: 2,707
    edited September 2014

    I don't have a horse in this race even though I had chemo but I don't think it's fair for an "alternative" forum to be taken over by people bashing alternative. It would be like Michael Moore dumping Sean hannity out of his chair at Fox News and saying "I'm taking over now".

    The alternative thinkers aren't overtaking the chemo threads to tell people mid treatment that they are wrong.

    This thread feels harsh and ugly.

  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited September 2014

    AA...you are making sweeping generalizations and assumptions which speak to your personal biases.  Furthermore regarding N-of-1, you are doing the opposite.  You are envisioning treatments from "scratch."  That is a simplistic way of looking at N-of-1.  Please try reading some if the literature on this topic.  In fact, you might find you would agree with the philosophy because the individual data will give better clues to how patients will need to be treated based on their individual characteristics and risks.

    Lastly, I think we are a long way off from making assumptions on who needs more or less treatment based on lifestyles.  In fact, if you compared my sister with me, based on risk factors, she would have been the more likely person to get the breast cancer.  And with respect to lifestyles, I got cancer despite a very healthy lifestyle and there is nothing more that I could do with respect to lifestyle changes that would prevent recurrence.  Following my diagnosis, my doctor gave me a sheet of paper with all the "to do's" which I was already doing.  I asked if there was something more that I could do and he threw the sheet in the garbage.  My OB/GYN was even more flummoxed by not only my cancer diagnosis, but his wife's ovarian cancer as well.  He told me that I reminded him of his wife and he couldn't believe in his wildest dream that both of us would get cancer.

    Going forward, we need to crunch the data in a meaningful way.  That might level the playing field where the walls between conventional and alternative will fade. But the need for transparancy and evidence will never fade.  Without it, we will once again be in the dark ages.

    Deb...don't go to sleep at night worrying about what more you can be doing.  If you do, then cancer will win, even if you never recur.  Live each day. That's what the DH and I try to do.  Some days are harder than others.  DH also has cardiovascular issues and with all the monitoring and procedures and surgery that he has had, we still worry that we aren't doing enough.  But we also give thanks for all the good days that we have together and I make sure to always make plans so we have something good to look forward to.   Sleep well, make plans and let life unfold around you. 

  • Deblc
    Deblc Member Posts: 479
    edited September 2014

    Thanks voracious. I deleted my post because I realize I wasn't addressing the concerns of the OP and didn't want to intrude. But I REALLY appreciate your kind and encouraging words.

  • Moderators
    Moderators Member Posts: 25,912
    edited September 2014

    As Wrenn said above, please respect that this is in the Alternative Forum where Alternative treatments are discussed and not hijack it, would be only fair. Respect of people's choice to choose the Alternative treatments would be appreciated.

    There is another discussion on this issue by 'natural healing' of I want to refuse chemo and radiation where pro Chemo comments will be read, and would be a more appropriate location as it is in the Forum: Chemotherapy - Before, During and After where Alternative comments are not being discussed except as complimentary to Chemo.

    Certainly, there is an argument for the use of Alt therapy in conjunction with conventional therapies but please refrain from placing anti Alternative comments in this Topic. We would appreciate respect of this delineation.

    The Mods

  • Momine
    Momine Member Posts: 7,859
    edited September 2014

    Inga, I am perfectly aware of those clinics in Mexico and elsewhere, as are most people, I am sure. In the last 3 years I have read extensively about Gerson therapy, Budwig therapy, Laetrile and many others.

  • Momine
    Momine Member Posts: 7,859
    edited September 2014

    A.A., Denmark is also home to 2 global pharmaceutical companies.

    How a medical system approaches a disease is to some extent cultural. Danes value sports and exercise extremely highly. Most people exercise in some way, even if it is just riding a bike to work. 

    Once the studies started to accumulate about the advantages of exercise to cancer patients, the medical establishment quickly responded.

    In Greece, most people are very resistant to exercise, so most doctors don't even bother suggesting it, since they know it will lead nowhere.

    One study I would like to see happen is a comparison, in early, early stage breast cancer, between tamox and an exercise/weight management program.

  • Momine
    Momine Member Posts: 7,859
    edited September 2014

    A.A., as for diet, I was browsing medical articles yesterday for a different (but BC-related) reason. I came across a study that had looked at diet in BC patients to see if a good diet made any difference to survival, recurrence etc. They had to conclude that there seemed to be no correlation between diet and BC-specific survival. 

    They did, however, note that sticking to a healthy diet will reduce your risk of dying of something other than BC. Ironically, that would actually lead to more veggie-eaters dying of BC. It made me chuckle, since I am pretty careful about my diet post-DX (my diet before the cancer was also quite good, and certainly better than the average diet).

  • Meow13
    Meow13 Member Posts: 4,859
    edited September 2014

    Nobody has mentioned stress reduction I exercise and my cholesterol and BP are great because of it still fighting to try to lose weight but the thing I am really looking forward to is retirement to have the time and freedom to enjoy my life.  I am within a month of retirement and the stress is just melting away.

    I think stress is a huge factor in our health.

  • Momine
    Momine Member Posts: 7,859
    edited September 2014

    Reading this discussion, and thanks to everyone for contributing in a constructive way, it seems there are roughly two approaches to the question of alternatives. 

    One seems to be that the research backing alternatives is just a valid as the research backing conventional treatment, or where research is lacking for alternatives, this lack should be corrected. 

    The other appears to be that the entire construct we call "science" which includes both most medical research and most of conventional medical treatment is corrupt in some way and therefore not to be taken seriously.

    I get the feeling that much of the recurring conflict on the subject stems from this difference. Like Caryn, I fall in the former category - i.e. if you can show me the research for something being effective against cancer, I don't care if that "something" is a chemo drug or a certain vegetable/herb/seed/whatever.

  • lightandwind
    lightandwind Member Posts: 754
    edited September 2014

    I think the hospitals that Inga is referring to are not like the old alt clinics which were based on Gerson, Budwig, laetirile, although their may be a component of some of those with some patients, but the treatments are integrative and individualized, using many off label pharms and even low dose chemo in some cases, along w/ other regimens pertaining to diet, supplements, and lifestyle change.  

    One thing that many who use conventional don't get about people who use alternatives and I think is a part of recurring conflict is that people who use alternatives are different. They are different kinds of people. They will go outside of the box for solutions and something that makes sense to them. The research backs chemo, but considering all the deaths following chemo and the deterioration of health that follows-- it doesn't make sense. In this way, common sense weighs out over old research that I will say again- especially where there is big money at stake, is corrupt. It is the nature of the beast. 

  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited September 2014

    Returning to the subject of technology and data....there is a video of Eric Topol,MD, explaining the concept of real time data and treatment.  He has a family history of diabetes. He had a chip inserted in his body that speaks to a smart phone app that informs him of his glucose levels so he can adjust his eating, movements and medications throughout the day.  So, AA, there doesn't need to be the development of millions of different diabetic medications. The meds that we have can be adjusted accordingly to each person's needs AND lifestyle.

    Furthermore, the reason there are so few exercise/diet/lifestyle studies is because researchers know that generally speaking, people are poor subjects when it comes to writing things down and measuring things.  The word "portion" or "cupful" are nightmare words for researchers.  So unless, people are studied under tight controls, aside from retrospective studies, researchers were in the dark...

    But with smart phones and soooo many apps, there are many more ways today for researchers and physicians to get precise real time info regarding subjects/patients.  That's why I say that wall will fade thanks to transparancy and evidence!

    Going forward, there will be fewer reasons why smaller more accurate studies can't be done!  They will!  And, with more accurate studies and patients being able to single handedly take ownership of their own precise medical data, the potential for better treatments is on the horizon.

    My own adult kids are already doing it! There are apps that tell them everything about themselves.  My older son has a smart watch that he asks, "How far did I walk today?"  And the watch show him how many steps he has taken!  Can't get any more individualized than that!

  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited September 2014

    light... again you resort to generalizations.  But you still haven't answered my question about how you rationalize the outcomes today of pediatric leukemia patients?  You gave me an example here or there of individuals.  But you haven't told me what you think of childhood leukemia.  I'm really interested in your thoughts regarding this subset of individuals. 

  • lightandwind
    lightandwind Member Posts: 754
    edited September 2014

    Yes I did VR. I said too many children are still dying following conventional treatment of leukemia. 

    I stand by that statement..and I stand by my comment about big money corrupting research.

  • rozem
    rozem Member Posts: 1,375
    edited September 2014

    lightandwind. Can you please back up the statement " considering all the deaths that follow chemo..."  Do you have hard numbers backing this up? I think a healthy discussion is great and im reading this thread  w much interest but that statement seems like its just thrown in to substantiate your beliefs

  • lightandwind
    lightandwind Member Posts: 754
    edited September 2014

    There is an acronym on another website, LMGTFY. It stands for Let me google that for you.  Please do your own research everyone, take your time, read closely, check sources, including funding sources, and never stop researching, and always follow your own heart and what makes sense to you with all things considered. Yes, too many children are still dying following conventional treatment for leukemia. The info is not hard to find. 

  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited September 2014

    Light....  I understand that you think "too many children" are still dying from leukemia, but it is this statistic that I refer to and wish to understand your logic.


    "Although survival
    rates
    for most childhood cancers have improved in recent decades, the
    improvement has been especially dramatic for a few cancers, particularly acute
    lymphoblastic leukemia
    , which is the most common childhood cancer. Improved
    treatments introduced beginning in the 1970s raised the 5-year survival rate for
    childhood acute lymphoblastic leukemia from less than 10 percent in the 1960s to
    about 90 percent in 2003-2009. Survival rates for childhood non-Hodgkin
    lymphoma
    have also increased dramatically, from less than 50 percent in the
    late 1970s to 85 percent in 2003-2009."

     

    http://www.cancer.gov/cancertopics/factsheet/Sites-Types/childhood

     

     

  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited September 2014

     

    Light...here is an example of one of the clinical trials that the DH participated in.  He is one of the 7 subjects noted in the trial. This is one of those "thinking outside of the box" clinical trials.  This is an illustration also about how researchers go about getting their work published.


    http://www.ncbi.nlm.nih.gov/pubmed/18645163

  • lightandwind
    lightandwind Member Posts: 754
    edited September 2014

    why would any child have to die and undergo the horrendous suffering of chemo therapy,  if cannabis has shown to be effective? There is plenty of studies and info showing it to be effective in cases of leukemia. Politics are holding up the trials....as usual. 

    Research is slow. And people need help now. 

  • aunt_paula
    aunt_paula Member Posts: 271
    edited September 2014

    Deleted because my post was off-topic.

  • sandcastle
    sandcastle Member Posts: 587
    edited September 2014

    This Thread has Spiraled......suppose to be about Alternative Meds.....Liz

  • AlaskaAngel
    AlaskaAngel Member Posts: 1,836
    edited September 2014


    Thanks for that explanation, VR. I agree that it can be challenging to accurately measure the effects of diet and exercise, and what you describe could help to make that effort more accurate, so that the true values of healthy practices could be at least understood and recommended to help make more accurate decisions about choices already available.

    I think it might be best to put this discussion in a separate thread so that this thread could get back to the OP's request for info from others who have done alt tx.

    A.A.

  • AlaskaAngel
    AlaskaAngel Member Posts: 1,836
    edited September 2014


    sandcastle, I agree, and to the extent that I diverted into a discussion to try to understand the potential benefits of technology for either present conventional medicine or alternative medicine, I apologize. A separate thread for that under alternative therapies might be interesting, as long as it focuses also very specifically on the uses of technology as it applies to alternative therapies and not on conventional therapies. The OP made it quite clear that she was seeking to minimize such problems with her specific request and by acknowledging that she had also made the effort to explore her issues about treatment in the conventional forum, and I think that I/we should try harder to respect her intentions and needs.

    A.A.

  • wrenn
    wrenn Member Posts: 2,707
    edited September 2014

    I see the OP has moved on. She chose this forum no doubt because of it's title and didn't find what she needed but instead stepped into an "I know better than you" contest.

    Maybe a forum can be created for those with superior knowledge to announce or broadcast their intelligence and we can visit there when we are in the mood to be enlightened? In the meantime the alternative thinkers can come back home? 

  • AlaskaAngel
    AlaskaAngel Member Posts: 1,836
    edited September 2014

    lightandwind,

    For me personally, what is different is that I was never provided any genuine support at all for the process of evaluating my options. That was 12 years ago, and while I have and do see some occasional efforts to improve that, for the most part the bias remains with overetreatment through conventional means that still rely partly on financial gain. I regret having been railroaded. We are different in that our tolerance for risk is higher than those who accept conventional therapies with more trust in them.

     


     

  • lightandwind
    lightandwind Member Posts: 754
    edited September 2014

    Wrenn, so true. Thank you...

    AA yes, I agree.

  • sandcastle
    sandcastle Member Posts: 587
    edited September 2014

    I, do think you have to have a very different mindset for alternative medicine.....it has to be part of your Core....Liz

  • inga6060
    inga6060 Member Posts: 56
    edited September 2014

    I agree wholeheartedly sandcastle.  I have been around it my whole life.

  • granny72
    granny72 Member Posts: 29
    edited September 2014

    Some of us would like to know about an alternative approach because we are or were unable to do the chemo.  I had an anaphylactic reaction to taxotere and after 4 taxol/herceptin infusions my esophagus narrowed such that I lost 30 pounds and had to have 2 esophageal dilations.  There are others on these boards who because of the side effects are unable to complete chemo.

  • TB90
    TB90 Member Posts: 992
    edited September 2014

    Naturalhealing:  I worry that your quest for info has been derailed.  I will share with you what I believe and how I have decided to approach this disease.  I feel that breast cancer is like a perfect storm.  There are many, many factors that contribute to breast cancer and we may not have even come across the most significant factors yet.  Lets say that there are 100 risk factors, like genetics, age of first birth, age of menses, obesity, alcohol, etc. etc.  Lets say that we have to have at least 15 risk factors all line up at once, thus the perfect storm.  Given all the possible contributing factors, the possible combinations to create a perfect storm are almost endless (I hated my statistics class in University, so lets just say endless).  Thus it is so very difficult to ascertain the cause of breast cancer.  When we cannot pinpoint what causes breast cancer, just what may contribute to it, then it is impossible to know how to prevent or cure it.  Treatments are based on what we know may work for some, but as we all know, it is far too inadequate.  The best bet we have is to un-create the perfect storm and to treat cancer the best way we know how to at this time.  So I took every conventional treatment available and studied every possible lifestyle change that may also provide benefit.  Yes, it seemed bizarre to eat clean, work out every day, eliminate toxins from my cleaning arsenal at home, lose weight, get rid of parabans in my hand lotion, throw out my precious lavender scented products, buy organic, etc etc while getting in my car to drive 90 minutes each day to receive an enormous dose of radiation.  But I decided to do everything that may help.  Nothing is proven to cure or prevent cancer, but maybe in combination, I will prevent that perfect storm from forming again.  But I still drink some wine as that makes me smile and I think that just may help keep the storm away.  Good luck in picking the ideal treatment plan for yourself.          

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