Building our immune systems with Stage IV bc

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  • dlb823
    dlb823 Member Posts: 9,430
    edited June 2015

    Mrs. M, I just ordered that book and am looking forward to reading it. Would you say rebooting or somehow re-activating the immune system is the common denominator in reported radical remissions?

    And DanaMarie -- yes, please do share anything you learn! And I think Teakie88 is also hoping to get an update from her onc for us from a followup conference.

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  • DivineMrsM
    DivineMrsM Member Posts: 9,620
    edited June 2015

    dlb, the author of the book, Kelly Turner, discusses nine key factors that contribute to the radical remissions she studied. Certainly a change in diet is one factor. Using herbs and supplements are listed as another factor. And there are other things less tangible such as using your intuition. It's also not a case of "you have to do all nine of these things for results". Yet it also doesn't claim anyone doing these things is guaranteed remission. It's such a well written and yet easy to read book. I hope you like it.

    Something Turner says that surprised me is that radical remission cases are not researched and reported on comprehensively, and her book is an attempt to compile this information so that others may benefit from it.
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  • MusicLover
    MusicLover Member Posts: 4,225
    edited June 2015

    Mrs. M., I looked at Kelly Turner's website which has a list of radical remission cases but honestly nothing impressed me in the way of breast cancer so I was wondering if she has some good cases of stage IV breast cancer remissions in her book.  I did see the interview she did with Dr. Oz and a woman who had breast cancer and that was impressive so I am assuming that she has others like that in the book.  I realize that her book covers all cancers but I was wondering exactly how many breast cancer cases does she discuss?  It would be wonderful if she listed all of the cases somewhere in the book, does she do that? Thanks

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  • Teakie88
    Teakie88 Member Posts: 226
    edited June 2015

    MusicLover: I own the Radical Remissions book, and it cites Jane Plant. I have two or three of Jane's books she has published on her journey. Jane is a geochemistry professor in England and got breast cancer when she was 42. I think she had a 5-year remission with it, and it came back about five different times. She was at the verge of just ending it when she went into a major diet lifestyle change and became a Radical Remission patient for approximately 20 years. In 2011 her cancer came back, and she states that it was as a definite lapse in her following her own plan. She was busy teaching, lecturing, writing books, and just became lax about what she consumed. She now states that her oncologist says she is in complete remission again since 2012. She has written the "Plant Programme" and "Your Life Is In Your Hands". I think she is definitely onto something with diet, and I also recommend reading "The China Study". by Campbell. Ann

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  • MusicLover
    MusicLover Member Posts: 4,225
    edited June 2015

    Teakie, Thank you!  I wonder though if different things work for different people.  There are several stage IV ladies on BCO who have radically changed their diet and they are 5+years out from their stage IV dx so it might be a factor.  Thanks again!

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  • dlb823
    dlb823 Member Posts: 9,430
    edited June 2015

    I wanted to share a couple of things I heard on an XM Dr. Radio program about lung cancer. The docs were very excited about this new immunotherapy vaccine that's been developed in Cuba, of all places. But the interesting thing is they said it should work for several other types of cancer, including breast.

    Here are a couple of articles I've pulled up about it:

    http://www.huffingtonpost.com/2015/05/14/cuba-lung...

    http://www.huffingtonpost.ca/2015/05/28/cuba-lung-...

    Another thing they talked about was the concept of immunotherapy being as much about a brake pedal as a gas pedal. In other words, strengthening our immune systems (the gas pedal) frequently isn't enough because cancer cells can hide from even a very strong, functioning immune system. Immunotherapy drugs are the brakes -- something that attaches to the protein of the cancer cell to make it a better target for our immune systems. (I was driving and couldn't make notes, so probably really butchered that explanation. But you get the idea!)

    And here's an interesting article I just found, looking for a better explanation of that analogy.

    http://www.wsj.com/articles/cancers-super-survivor...




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  • VivianS
    VivianS Member Posts: 159
    edited June 2015

    Dlb,

    Thanks for the great info! It's weird, but my husband and I were just talking about Cuba TODAY! He was saying he'd like to vacation thereband I said I did not know how their emergency medical care would be (always making sure in case I should get sick or something). He said they have excellent medical care there and the place is filled with doctors.

    I like the gas petal analogy. Will definately read the articles on the links.

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  • MusicLover
    MusicLover Member Posts: 4,225
    edited June 2015

    Deanna, I like your analogy too.  Too bad that they don't feel that this is a cure.

    Also, I know that the FDA has all of these protocols that they need to follow but it seems to be a shame that we can not review Cuba's clinical trials and just pick it up from there.  With all of the testing that the FDA requires we won't see this drug being used here for years to come I bet - such a huge waste of time and money (and lives!) but that's my opinion. (I know in this case that it is Cuba we are talking about but even if it was a country that we had better relations with it would be the same thing.)

    (I also wondered why Cuba researched it for 25 years, were they perfecting the drug during that time?  or testing it on humans for 25 years?  We will have no answers to this, I know, it just seemed like a long amount of time. What do you all think? )

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

    25 years sounds right to me. There's the preclinical testing, animal testing then human testing in 3 phases. No fast-tracking by the FDA. Winking The vaccine will certainly be cheaper in Cuba and would be worth going there for if it were to work for breast cancer as well. FDA approval is costly. 


     

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  • dlb823
    dlb823 Member Posts: 9,430
    edited June 2015

    The irony of it all is, it takes years for these drugs to come to market, then not a small percentage of them get recalled anyway because in spite of all the testing and (often manipulated) trials, they still create life-threatening SEs. http://prescriptiondrugs.procon.org/view.resource....

    And excellent point, ML, about its track hx in Cuba being worth something. But that would probably be waaaay too simplistic and logical for our FDA to figure out.


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  • MusicLover
    MusicLover Member Posts: 4,225
    edited June 2015

    Heidi, Why do you say no fast tracking by the FDA?  That is something that is done when they think a drug is worthwhile or do you mean the sort of fast tracking that I was talking about, super fast tracking? 

    So for instance that drug that I have been following that was developed by Stanford, I think that they said 10 years ago the discovery was made, phase I clinical trial started last August and I recently read (thanks to JohnSmith) that they expect it to be completed Aug 2017 although I originally read 18 months is typical for Phase I clinical trials give or take a few months, then there is phase II and phase III.  (My funeral falls somewhere in the middle of all of that testing. I am joking, sort of. ).

    Deanna, Yeah, it's all crazy.  I guess the news has always had these wonderful headlines that a cancer cure is on the horizon and then fizzle. 

     

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

    i meant no FDA fast-tracking in Cuba. 

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  • MusicLover
    MusicLover Member Posts: 4,225
    edited June 2015

    Got it. I hope that they fast track it when it comes here. 

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  • Teakie88
    Teakie88 Member Posts: 226
    edited July 2015

    Got back from my monthly check-up, and I told you I would follow up with my oncologist regarding her condensed ASCO convention she went to in St. Louis. She said she was the only oncologist from my area that even went to it. Anyway, she said she was disappointed that no new "amazing" information was forthcoming about breast cancer other than she did say several new drugs are coming down the "pipeline" giving us more treatment options down the road. I found that somewhat encouraging, but she, as well as I, were hoping for a lot more than that. All I can say is keep pluggin' along! Best to all! Ann

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  • MusicLover
    MusicLover Member Posts: 4,225
    edited July 2015

    Ann, Thank you for the update, All of the great things that they are talking about have a long way to go. Most are in phase I clinical trials so I figured that very little information would be available yet.

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  • Teakie88
    Teakie88 Member Posts: 226
    edited July 2015

    MusicLover:

    What she said to me was that these drugs coming down the "pipeline" would give me more options should I ever need them, so that led me to believe that they might be coming sooner than later. Just my take on it. Ann

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  • MusicLover
    MusicLover Member Posts: 4,225
    edited July 2015

    Ann, That's good news. I was referring to the immunotherapy drugs but it is good that your onc feels positive about other things becoming available.

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  • Teakie88
    Teakie88 Member Posts: 226
    edited July 2015

    MusicLover:

    She didn't mention anything about the immunotherapy research, which I had mentioned to her pre her visit to St. Louis She was somewhat under the weather today from some kind of viral bug she got this weekend, so when I go in next month, I'm going to push for more specific information from her. Advocate! Advocate! Advocate! Ann

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  • JenLeg
    JenLeg Member Posts: 8
    edited July 2015

    i dont know if anyone has mentioned this before, but I've been enjoying sensory deprivation in a floatation tank. It is The. Best. I'm always all up in my head with my own self, plus i'm a stay at home mom to a 2.5 year old boy, so this allows me that precious me time. I feel lighter, my skin is softer and the best part is that i get to be by myself!

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  • bama351
    bama351 Member Posts: 42
    edited July 2015

    For those who are want to keep their Vitamin D level up.. does anyone do it by getting more time outside? Or do you do it strickly with supplements?

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  • Teakie88
    Teakie88 Member Posts: 226
    edited July 2015

    bama351:

    Regarding your question on Vitamin D supplementation---my Vitamin D levels were always in the gutter, something like 16 or thereabout. I walk three times a day, 2 miles each time, and my levels did not seem to be going up on their own being in the sun like that. Soooo, I started taking around 4800 ICU of Vitamin D daily in caplet form, and my levels are now up to right around 50, which is where I want them to be. Ann


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  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited July 2015

    Getting more sun did not raise my vitamin D levels. Supplements did.

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  • DivineMrsM
    DivineMrsM Member Posts: 9,620
    edited July 2015
    JenLeg, please explain flotation tank. Sounds intriguing.

    I have a quasi-theory about vitamin D and cancer on the increase, how having whole house air keeps many of us inside more often and not getting the sun's rays like we used to. Is there a connection, I wonder. It was so easy to be outside all summer long when my son was little and many family activities involved the great outdoors.

    There are only so many days of sunshine in Ohio, and I try to get out when I can. Sometimes I bathe in it, very aware that I am allowing it to heal my bones, that's what I tell myself. Still, because it's a seasonal thing here, I take a supplement, one tablet of 5,000 iu's of D3 daily.
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  • txmom
    txmom Member Posts: 306
    edited July 2015

    About 10 years ago I went to a Dr and she tested my vitamin D level and it was low and she said," It's a wonder you don't have cancer." This is when we lived in Southern California. I got plenty of sunshine everyday. We live in South Texas now, still plenty of sunshine. I take a supplement. I haven't had my level tested in awhile, maybe I should. DivineMrsM, I grew up in OH. I loved it, so pretty but definitely not enough sun. Especially in Stark County.

    Does anyone take a protein supplement? If so which one? I'm not sure I'm eating enough protein after becoming vegan. Thanks so much and have a great day!

    Dana

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  • HLB
    HLB Member Posts: 1,760
    edited July 2015
    Dana, I use whey protein powder in a smoothie every day. Someone posted an article about whey and how its good for fighting cancer. It was probably 3 years ago that I saw the article. My holistic dr also recommended whey powder.
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  • pearlady
    pearlady Member Posts: 882
    edited July 2015

    Was just advised of this website by my onc's former nurse.  Don't know if any of you are familiar with it, but I find it has some very good information.  There is a link to sign up for their updates and videos.

    http://breastcanceryogablog.com/tag/sunflower-seeds/

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  • agness
    agness Member Posts: 576
    edited August 2015

    I have heard that like Perjeta for early stage disease, more new therapies are going to get pushed to the patient population. This will result in some unintended SEs and done may get pulled but compared to the snails pace they were moving before it seems a welcome change.

    There are also, I have heard, lots of small research labs working on novel therapies, some which might serve individuals better. There are free agents who help connect patients with these developments outside of FDA process

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  • letranger
    letranger Member Posts: 234
    edited January 2016

    I saw there was a discussion on the book "Radical Remission" earlier on this thread and I finally purchased it. It came today and I can barely put it down. Interesting read. Although there may be nothing "new" in her 9 Key factors, it is still a beneficial read for me to process the info all at once (chemo and rads brain). I think we DO need to examine those anomalies and radical remissions and examine what aided those patients to beat cancer. Sure, there are a lot of factors involved with cancer and it is complex. IMHO we need to find out what works best for us and adjust things in our diet and lifestyle. Why the freaking heck did I get cancer??? How can I eradicate it? How can I live longer? I am constantly searching for answers as we all are. It's why I keep coming to the boards daily. I gain valuable, raw knowlwdge. I am educated by you experienced women, hoping I can piece together a "treatment" that works for me.

    xo letranger

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  • DivineMrsM
    DivineMrsM Member Posts: 9,620
    edited January 2016

    letranger, I loved the book. It's been awhile since I read it, but I remember feeling as you do, not wanting to put it down.

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  • dlb823
    dlb823 Member Posts: 9,430
    edited January 2016

    I've posted this link elsewhere, but I figured anyone following this thread on immunotherapy will be interested. It's about 45 mins. long, but once I clicked on it, I couldn't turn away... so very impressed with the amount of expertise, cooperation, and determination assembled by Patrick Soon-Shiong, and very hopeful that, with real effort and synergy, this could go even faster than he's projecting!

    http://www.cancermoonshot2020.org/

    And thanks for the reminder about Radical Remission. I inadvertently purchased the audiobook (in a hurry... didn't read carefully), and it's been setting on my desk now for weeks. I should plug it in and listen to it! Deanna

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