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Jane McLelland protocol / COC protocol for STAGE IV members ONLY

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Comments

  • anotherone
    anotherone Member Posts: 555
    edited October 2019

    Frisky , I am afraid you quoting my whole post and saying it is all wrong is not helpful in finding out what exactly you believe to be factually wrong. I seem to have annoyed you greatly for which I apologise - we are both and all here in enough of deep sh.t to add stress and negativity. I should not have called you on your rudeness and I promise not to do it again. Piece Friendship Chewing Gum 👌

  • Frisky
    Frisky Member Posts: 1,686
    edited October 2019

    I accept the peace pipe...look it's very simple...

    like us she was very sick with various types of cancer and figured out a way out...that's what's important ...

    the details don't matter because what we learn from her experience is that we have to figure out what drives our cancer and make sure to block first and foremost those pathways...and we need each other because we learn from each other.....reducing her accomplishments doesn't help people like JFL that has stated she doesn't have time to read the book...and is looking for help...

    One thing is certain...regardless of what's being posted...I will not make any more corrections.

    So yes...peace and let's get back at healing ourselves...

  • divinemrsm
    divinemrsm Member Posts: 6,614
    edited October 2019

    Frisky, since Anotherone has chosen to forgive you I will honor her lead. As for my not reading the book, I will defend another poster who I feel is being attack regardless of what I read. Reading a book is not a prerequisite for calling out the rudeness of a poster. And now I will yield to Anotherone’s wishes.


  • Frisky
    Frisky Member Posts: 1,686
    edited October 2019

    Taking side in a debate without having a clue..well I don't know what to say about that.......except...yeah...I forgive you too....can we move on now? Don't we have some ibrance pills to take?

    Oh...one more thing...rude or not I will no longer be baited in these types of diatribes...

  • Faith123
    Faith123 Member Posts: 26
    edited October 2019

    This book sounds very interesting...Going to try the protocol

  • Frisky
    Frisky Member Posts: 1,686
    edited October 2019

    good for you Faith! I hope you find your way, like Jane did to a healing...

  • JFL
    JFL Member Posts: 1,373
    edited October 2019

    Nicole, good luck with your upcoming surgery! I will be praying for you and will be in your pocket as well. I am a huge proponent of local liver therapy. It can put the brakes on liver mets in a way that systemic treatment may not be able to do.

    Anotherone, Nicole and Frisky, thanks for your responses about the Jane McClelland book. I may need to try to listen to her interview again or read some articles about Jane's whole backstory.

    My COC appointment for today was pushed to tomorrow. I was traveling for a few days and couldn't upload all my medical records until Sunday night and the nurse suggested I push it so that the MO has time to read my files. Fair ask.

  • anotherone
    anotherone Member Posts: 555
    edited October 2019

    I am sorry and thank you , Divine...

    Going back to topic- may be it will be useful to someone at some point - when I started dipiridamole I had headaches from it. Bad enough to discontinue. The doctor said It is a known side effect and it gets better - i re started, with just one tablet instead of 2 tablets which is a full dose which I taken at night to sleep through the pain and it worked! I am no longer woken up by headache. Next I will have to summon the courage to take it day time too .. I know it is not part of COC protocol but this one was both mentioned in the book and stressed by my functional medicine doctor.

    May we all heal ... ( says she while trying to remember to pop in another loperamide for prevention of having to pop in to " Globe " ro wash her shi..ed pants and going commando after under amazed eyes of other ladies. One of them thought I had a female period's accident and offered me a period pad- I wish I did :().

  • Faith123
    Faith123 Member Posts: 26
    edited October 2019

    So what are the MAIN off label meds do we need?

    I’ve been doing some research but it seems there’s a lot of information out there;anyone who is triple positive and has the list of medications we need?

    I got diagnosed with DCIS while I was pregnant and I funny enough I had gestational diabetes (like really bad!) I was put on metformin but I wasn’t really consistent with taking my meds.

    In my case I really think I would benefit from the metformin .


  • nicolerod
    nicolerod Member Posts: 2,877
    edited October 2019

    Faith... You really need to read Janes book and if you have FB go to Janes page and search Triple Positive. Everyones MetroMap (what their cancer feeds on) is different because of the different cancers. Triple Positive does not feed on all the same things Triple Negative or ER Positive feeds on.

    I have a learning and reading disability and I was very nervous to read the book but so far it's not a difficult read and I am 3/4 of the way through. The medical terms and talk of genes and such can get overwhelming especially with the metro map but just come and ask questions that is what I do.

    Also you should read through this thread completely. The Ringworm thread from the beginning can be helpful but may get confusing for you because the Ringworm med is Joe Tippens protocol not Janes but there is a lot of talk of the COC there...that is mostly why I am just trying to post about Janes stuff and COC here so it doesn't get mixed together any more.

    EDIT to add in: Faith are you stage 4? This thread is for stage 4 BC...if you are not...let me suggest that you create a Jane Mc. thread in the stage that is relevant to your cancer. Let me also explain why I say this. The meds people take to prevent recurrence can be different and much different from the people that already have metastatic disease. Not only did I read this in Jane's book but I have many many people on the FB groups that also have mentioned this. COULD people that are not Stage4 and people that are Stage 4 wind up taking some of the same things yes...but not all, thats why this thread is here in Stage 4 so that those us who have Metastatic disease now can discuss things on the same level. Please just start the thread in what ever stage you are and bring awareness there for those ladies that are the stage you are.


    JFL thank you for the well wishes!!! :)




  • anotherone
    anotherone Member Posts: 555
    edited October 2019

    Faith, I am not sure what "we " you are referring to. This is a board for stage 4 ones in case you have not noticed ... All we know already was said so you can read this thread and the ringworm discussion. If you read it you may notice that there is mentioning of different medications and nobody have created and proved the best and only combination for each one of our cancers and stages.

  • simone60
    simone60 Member Posts: 952
    edited October 2019

    Frisky,

    I found a doc that has web links to the info on FB group for Starve Breast Cancer. You don't need a FB account to read the docs.

    Web page is myhealingcommunity.com/sbc

  • Frisky
    Frisky Member Posts: 1,686
    edited October 2019

    Thanks Simone..will check it out....I just did and it's amazing...thanks again! Lots of useful and well organized information...

    Unfortunately, all the links lead to FB...but I think I'm familiar with the information that I would find there...

    If someone had found the keys..and people were succeeding it would make the nightly news and we would know all about what they did and didn't do...I'm going to stick with what I know...

    hopefully major progress will happen soon with the metabolic approach...and may we all benefit together...

  • Faith123
    Faith123 Member Posts: 26
    edited October 2019

    Nicole...I am stage 4 mets to spine hence why I commented on this thread as it's under Stage four Only,I've tried editing my signature numerous times and it's been giving me issues.

    I will read and carry on doing my research;Thank you for starting the thread.😃😃😃


  • husband11
    husband11 Member Posts: 1,287
    edited October 2019

    Faith, I find editing of signature and adding treatments, etc, is anything but intuitive. I had a heck of a time figuring out how to update it, back when I did.

  • anotherone
    anotherone Member Posts: 555
    edited October 2019

    Faith, sorry for being unpleasant. Yes diagnoses/treatments are difficult to sort as my signature attests. You may just want to add signature as I did rather than struggle trying to get diagnosis and treatment right.

    I would have created a dummy fb profile if I thought all those groups have the answer to your question ( which is of course everybody's question ) but I doubt I will find it there ...

  • nicolerod
    nicolerod Member Posts: 2,877
    edited October 2019

    Faith..easily fixed message a mod..thats what I did when I first got here...They will direct you to the right place. You should know there are many people that come in Stage 4 that are not Stage 4. I stand by my post and hope that other members that come here who are not Stage 4 respect that, and start the thread in their respective Stage Group.

    Good luck with your research :)

  • simone60
    simone60 Member Posts: 952
    edited October 2019

    Hi Faith,

    A lot of us are on the CO C protocol which you can google. COC will prescribe 4 meds; metformin, doxy, mebendazole, and atorvastatin for a fee. Some are using fenben instead of mebenazole. Some people are lucky enough to have a neuropathic DOC or primary DOC that will prescribe the off label drugs which would save you money. I think the doses were posted in the fenben thread or possibly here. You would need to block the remaining pathways with supplements or other off label drugs.

    PubMed is a good source to determine what the primary pathway is for your type of breast cancer. Per Jane's book you need to determine that so you can focus on blocking that pathway first. But you need to block all pathways because cancer will find an alternate pathway.

    Other good sources are Jane's FB page, the link I previously posted for starving cancer, and Joe Tippens FB group.

    We are all just trying to figure out supplements and doses etc. So please feel free to chime in.


  • divinemrsm
    divinemrsm Member Posts: 6,614
    edited October 2019

    Re: the stage iv thing. I appreciate making sure posters are stage iv in this section. It seemed for awhile there, we had some overlapping in numerous threads here from lesser stage posters. It confuses me and creates a different dynamic, so I prefer the only stage iv threads. There's a newly created stage iv section that's open to all stages and I think it was good to create that. I don’t go there but it seems a good additon.

    All that said, I’m waving hello to Faith as I don’t think I’ve seen you before on the boards.


  • Faith123
    Faith123 Member Posts: 26
    edited October 2019

    Nicole- 100 % right it makes sense that we have this group for Stage 4 Only especially with regards to this Protocol ,I agree😀

    Simone80- Thank you for the breakdown;it makes sense hey-But it’s scary to think that cancer always seems to find another pathway to survive and it seems like when it mutates it comes back with vengeance.I like how the Meds target some of the Cancer Stem Cells as they seem like the culprit when it comes to metastasis.

    Anotherone-No worries🙏

    DivineMrsM- Thank you for the welcome,I’ve learnt soooo much from the boards😌

    Husband11-Mods are going to assist me -Thank you

    Shouldn’t be a problem getting some of these prescribed which is a good thing!

    I wish all of us some success

  • husband11
    husband11 Member Posts: 1,287
    edited October 2019

    I don't think we discussed Ivermectin on this thread. In case anyone is interested in the anti-malarial and anti-parasitic drug, it is being considered for repurposing from human use for anti-parasitic to anti-cancer.

    Click the link at the bottom of the summary to access the whole article free.

    https://www.ncbi.nlm.nih.gov/pubmed/29511601

    There is a long history of its safe use in humans, and much in vitro and in vivo research to show it acts against cancer, cancer stem cells, and synergizes with various chemo drugs. It is also available non-prescription in the veterinary version.

  • JFL
    JFL Member Posts: 1,373
    edited October 2019

    Hi Faith. Welcome!

    I also posted this on the fenben thread but want to post it here also:

    I had my COC MO appointment tonight and meds will be ordered tomorrow. She recommended I start milk thistle as well for liver support. As for supplements not to take, she mentioned berberine (interferes with atorvastatin metabolism), fenben (for obvious reasons, given mebendazole is part of the protocol), CoQ10 (blocks atorvastatin action) and no grapefruit or pomegranate. I will have to quit the CoQ10 and pomegranate juice and order some milk thistle. I am going to start on a lower dose of atorvastatin at first given that my liver enzymes are a bit elevated but not too much over normal. I asked why the rotation of mebendazole and doxicycline month per month and it is due to those taxing the liver and kidneys. However, in the event of brain mets and progression of other mets, they will be given at the same time as the benefits outweigh the risks in that case.

    For those who take milk thistle, what guidelines do you follow (dose, time of dosing, brand, etc)?

  • sbaaronson
    sbaaronson Member Posts: 121
    edited October 2019

    Hi JFL,

    I am taking a product called Hepatone Plus by Designs for Health. It is Milk Thistle and some other botanicals to help protect the liver. Designs for Health is a professional quality supplement company.

  • JFL
    JFL Member Posts: 1,373
    edited October 2019

    Thanks for the info, sbaaronson. I went to the drug store today to pick up some milk thistle to at least get started until I do more research on the best brands/formulations. I found a few milk thistle-based liver support products that contained other helpful ingredients. However, I found all of them contained turmeric, which is something I stopped taking when I started tamoxifen due to contraindications between the two. I did find a Nature's Bounty milk thistle with only the extract from the seed and purchased that for now. Do you know whether Hepatone contains turmeric?

  • AllyBee
    AllyBee Member Posts: 99
    edited October 2019

    Hi

    I'm hoping it's ok to post this here, I've never posted on here before but have been following with great interest. I came across the below article regarding menbendazole increasing the effectiveness of radiation in TNBC. I started radiation today for a met in my spinal fluid and was thinking about taking membendazole tomorrow. Can anyone please point me in the direction of some information on dosage. I think 100mg might be standard coc dosage but I'm not sure.

    Thank you in advance

    Ally

    https://www.sciencedirect.com/science/article/pii/...


  • nicolerod
    nicolerod Member Posts: 2,877
    edited October 2019

    JFL...aren't you still on Ibrance?? If so you are not suppose to take milk thistle with that. Why not just use ALA it works just as well (studies say) and I just saw a guy on facebook yesterday that had ALA IV and he said it cured his cancer. I have been taking it for 2 weeks.

    Hi Ally welcome. I "think" some people on here are on the 100mg like you said..but what dose did the prescribing doctor give you?

  • AllyBee
    AllyBee Member Posts: 99
    edited October 2019

    Hi Nicole.

    Thanks for replying. It's not a prescription drug in Australia, I can buy over the counter at a pharmacy. I haven't spoken with any Dr's about it yet unfortunately. I don't think my oncologist would be on board, she wouldn't prescribe metformin for me. My radiation oncologist I've only met once via Tele conference, I'm still sussing him out, the joys of living semi rural. I should meet in person next week, I think I'll take the article and see what his thoughts are. Can't hurt.

    Ally

  • nicolerod
    nicolerod Member Posts: 2,877
    edited October 2019

    Ally, yes I know what you mean about not being able to tell them. I think Simone here has mentioned her dose...I do know that it is 1 month on...1 month off hopefully she will chime in here. :)

  • JFL
    JFL Member Posts: 1,373
    edited October 2019

    Hi Nicole, I am on Navelbine and Tamoxifen. I am not in Ibrance now. Itook Ibrance in 2015-2016.

  • anotherone
    anotherone Member Posts: 555
    edited October 2019

    yes it is 100 mg ( one tablet)/day

    I am not sure there is much science behind this dose , I guess it is just picked because it is antihelmentic dose.

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