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Jane McLelland protocol / COC protocol for STAGE IV members ONLY

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Comments

  • sbaaronson
    sbaaronson Member Posts: 121
    edited October 2019

    Hi Nicole,

    A few thoughts:

    • Berberine should be taken with meals.
    • If you are doing both Berberine and Metformin, do one with morning meal, one with evening. I might do the Metformin in the am, if you have diarrhea, it won't keep you up at night. A side note on the Metformin, the extended release is less diarrhea producing.
    • Magnesium is a relaxant. I would take this at night, it might help the quality of your sleep.
    • It's a good idea to take D3 with K2. There are many companies that marry these 2 together. I happen to use one by Sports Research, it has the 2 in a coconut oil base for better bio-availability.
    • https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5613455/
    Best wishes for your upcoming procedure! Freeze them out!

    Stacey

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

    Thanks Stacy....

    Can you or someone tell me what they are taking for Dipyridamole??? Are you getting this prescribed...?? Is there a supplement that does the same thing?

    Stacy I am confused...I just read in Janes book that we should take Metformin BEFORE , 15 min BEFORE meals (especially if we do not have diabetes which I do not)??? But then I read that Berberine needs to be taken with a fat...So if I take the Metformin in the morning I will take it 15 min before I eat. Then take the berberine at dinner during the meal? Right?

    Stacy I like your idea of taking my magnesium at night. I was just about to increase this to help me poop but now that the ibrance is out of my system I am BACK TO NORMAL!!!! But I will move the Mag to bedtime since I am taking the Metformin in the morning. I will look for d3 +K2 problem is ..if I go any dose higher than 2000IU a day I get bladder pain :(.....

    I think i screwed up..asking my MO for the Blood Pressure med!!! UGHHH I think I confused that with a STATIN...Cholestorol lower med...because I am not seeing anything in the book about BP meds....


  • anotherone
    anotherone Member Posts: 555
    edited October 2019

    nicol , you probably were after propranolol which is a blood pressure medication and is deemed to be one of the pathways blocker and is in the book.

    I am not that bothered when and in what relation to meals I take - I suspect most is ok taken any time.

    Dipiridamole is deemed to be an autophagy blocker together with hydroxichloroquine; my functional doctor stressed those two as particularly relevant for metastatic cancer. Yes I am getting it prescribed , no I have not heard of a supplement doing the same thing.

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

    yea I pushed my luck Friday and asked her about the Hydoichloroquine...explaining about the trials for that anti malaria drug and the prevention of Metastasis...but she said no..mainly because it really does TAX the liver and that I know because I read it all over the facebook groups and the studies about the drug...so I will wait on that for now.... I am seeing a Natropath dr. in Nov...who I am hoping to get the Doxy from. I also just read in the book that Jane recommends taking the doxy with IV Vitamin C yet there are studies saying no to that....but I am doing what she says...

  • Eigna
    Eigna Member Posts: 256
    edited October 2019

    LovefromPhilly - I read your post about what you think regarding nutrition and lifestyle vs genes. Meaning genes over rule diet. As much as I am shocked (I’m fairly new in all this ; diagnosed in August with Early stage cancer) I can understand whyit may be driven by the genes more than lifestyle. My question is : is this why OncotypeDx test is important at early stage just to see how the tumour will behave later on? How accurate is this test ?

  • Eigna
    Eigna Member Posts: 256
    edited October 2019

    NicoleRod- saw your signature that you were diagnosed first with stage 0. No Chemotherapy was suggested when you were first diagnosed? Lumpectomy or Radiation therapy?

  • bsandra
    bsandra Member Posts: 1,037
    edited October 2019

    Dear Nicole, I did not read this thread during the weekend but yes, you can up the ALA intake to boost your liver. Also you can check cordyceps sinensis for this. Diabetes and other liver/kidney diseases are treated with it, it is also a potent anti-cancer agent, I read it was even prescribed in Eastern-Asia, like Korea and Japan, for bc treatment. Ask you MO about it. Some people use it with chemo too but I'd ask oncologist if he allows to use it. We constantly use it while not on chemo. I know there's much information that overwhelms you now, so just write it down and forget it for the moment. Saulius

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

    Nicole, I am glad that you have a good plan coming together and that your new MO has been great. It has been a busy, tough, scary few weeks for you. Praying this next line of treatment works for a lot longer than Ibrance. I agree with your sentiments on diet - it may help some but not all. Whenever I was in a position of being too thin from cancer/treatment without any “extra” fat or muscle, I was always uneasy, as if I was one flu away from not making it. It is important to keep oneself strong so our bodies have energy to recover from treatment. If we can’t recover, we can’t be treated. Eating “perfect” but having no energy can leave one’s body unable to recover itself. Diet is just the tip of a complex iceberg and there are so many factors, many of which I suspect are more important.

    OK, for those who have read Jane’s book - what is the deal? Did she actually ever have Stage 4 cancer? I listened to an interview with her and it sounded like she had cancer, it went away, then years later had some abnormal bloodwork indicative of a different, blood cancer, possibly caused by her prior cancer treatment, but it sounds like even the blood cancer was never confirmed. I am asking because I haven’t read the book (and likely will not have time to read it with full time work and young child). I

    I have my COC MO consult today with Dr. Mendez. Looking forward to adding this treatment and hoping it can buy me a bit more time on my current treatment and any future treatment lines. I don’t expect a “cure” but do believe it may extend the time until treatment resistance

  • anotherone
    anotherone Member Posts: 555
    edited October 2019

    JFL , she was oligometastatic ( lungs) and she had surgery to remove the tumour ( with or without piece of adjacent lung - I don't remember). Then years later she had that bloodwork which was never followed up with conventional medicine.

    So I usually clarify that when someone mentions that she "cured herself from cancer" which resulted in Frisky from this board getting annoyed with me for what she classed as " diminishing Jane's achievement" . Those are facts according to her book and then each one decides how to see them.

    My functional doctor stressed dipiridamole and hydroxichloroquine to me as particular meds useful for stage 4. I do not think COC does them but you can check with them and keep them in mind.

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

    Elgna...can you please private message questions about Oncotype..etc.to the person you want the information from. .This thread is for Stage 4 people...and I really don't want to get the thread off track with other questions because when we do that, and people try to come to the tread to find something ...sometimes there are pages and pages of things off that topic it makes it difficult and takes a long time to find things that are actually related to the topic. Thanks :)

    Send me a PM and I will tell you all about my Stage 0 and how I was treated :)


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

    JFL..jane first had Ovarian or rather cervical cancer...(shoot sorry can't remember which)...then She go it in the Lungs and was Stage 4. :)

    I do know that the hydroxichloroquine is very taxing on the liver and I know you, like me, have liver mets so be careful with that. I want to do it..but am going to leave that as my last thing to add in....I need to make sure my liver is ok first.

    I did tell you all that my procedure is Oct 28th right ?


  • simone60
    simone60 Member Posts: 952
    edited October 2019

    Hi everyone,

    I found a FB group that has a lot of useful information on metro maps for specific types of BC. Not sure if everyone is aware of it but it is called Starve Breast cancer:ordered info. It is only for discussing and posting research information.

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

    Nicole thank you for the sanity...I'm glad I'm not the only one that read the book properly and have to correct people...

    Ultimately, you have to ask yourself, if what she accomplished was not short of a fkng miracle ....than why are you following her protocol?

    Why would anyone? Why would there be a whole clinic based on what she learned and accomplished...okay...I rest my case now....

    JFL, to make a long story short, this woman was told to go home and put her affairs in order...instead she didn't give up...researched and started taking off-labels medications that were known to block the genetic pathways affecting her CANCERS and she made it! 16 years later is alive and doing very well...thanks NOT to Anotherone...

    My current MO at MKS didn't bat an eye when I mentioned I was using off-label meds to block pathways...when asked, she confirmed that MSK is looking in that direction...that's how much this woman has changed the landscape...SHE should be getting a Nobel...


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

    Simone, please post relevant information, if you can, such as: what pathways are likely to affect MBC...

    I know that the idea is to block them all at the same time, but knowing what MBC prefers would be helpful...

  • simone60
    simone60 Member Posts: 952
    edited October 2019

    The Facebook group I recommended to people to join has all that information along with the research that backs it up. Sorry just too much information to copy here.

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

    Thanks for brining up that facebook group Simone. I have just requested to join.

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

    I understand...I'm terribly allergic to FB...Zuckerberg gives the creeps...I guess I'll make it up as I go along...

    Nicole...best of luck with your upcoming procedure...I’ll be there with you...in the so-called blessed pocket...

  • simone60
    simone60 Member Posts: 952
    edited October 2019

    It has a lot of Good info and it is laid out really nice, easy to get around.

  • simone60
    simone60 Member Posts: 952
    edited October 2019

    Frisky,

    I can download a couple of metro maps for you. I'll see if they have something specific for ILC. Otherwise I'll look for er+ her2-. Give me some time, my brother and sister in law are visiting this week.

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

    Simone...you’re an angel...yes...that’s all that’s needed...some success story, protocol specific to that type of MBC...thanks! Enjoy your family

  • anotherone
    anotherone Member Posts: 555
    edited October 2019

    Frisky , I agree completely with what nicol written about Jane , and what I written does not contradict what Nicol had written- not sure why you agree with her recount and so vegemently disagree with mine. She just have not mentioned that Jane had an operation on her lungs(which I reckon is an extremely relevant info) - or do you mean to state that she DID NOT have an operation?

    Quinine and liver I understand , what about dipiridamole?

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

    Anotherone...I think what Frisky meant was that you made it sound like Jane just started with mets in lung..but she didn't..she had a different cancer first years prior. That makes a difference and she had chemo treatment for it. Ref: dipiridamole I have not researched that enough for the liver but I know the Hydro is very very taxing.

    Simone..I am in that group...I talk to Abbey and some others regularly via messenger.you are right about there being too much to copy and post..and sometimes to be honest it gets crazy with the conflicting information but it is a great site. Frisky pretty much every thing you are taking is what is being taken for ER+ Her2 - BC. :) from what I have seen so far on the 3 maps I saw for ER+ BC. To be honest we have GREAT info on here some that I even brought over to there...like some that Husband11 shared from the "Do Not Take List" thread on here :)

    Frisky thanks for the well wishes :) little nervous..but overall just wanna DO THIS!!!

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

    anotherone...let's just agree to disagree...like I've said on numerous occasions...

  • anotherone
    anotherone Member Posts: 555
    edited October 2019

    frisky , unless you can point exactly what out of what I written is not true I would have appreciated you not telling me to go and read a book again , telling me I am wrong and have not read it well , telling me I am spreading misinformation etc. In my books it is just plane rude and however eminent, charming and well loved character you are on this board rude is still rude.

  • divinemrsm
    divinemrsm Member Posts: 6,621
    edited October 2019

    I have to agree with you, Anotherone.

    Frisky, your post was incredibly rude to Anotherone. You can have an opinion, but it is not THE OPINION of everyone else, tho others may agree with you. People are allowed to read something and interpret it how they see fit. We do not all have to bow down to what you think. You can have your opinion, but do not bully others into having the same opinion. Dont go telling Anotherone to do her homework like your everyone’s instructor here. You’re merely a poster the same as everyone else and we don’t abide by your rules and ways of thinking. We are adult women capable of our own critical thinking and don’t need or see you as some kind of authority over us.



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

    this is what's wrong....the whole of it!

    by Anotherone

    JFL , she was oligometastatic ( lungs) (wroonnggg) and she had surgery to remove the tumour ( with or without piece of adjacent lung - I don't remember). Then years later she had that bloodwork which was never followed up with conventional medicine. Wroongggg!!

    So I usually clarify that when someone mentions that she "cured herself from cancer" which resulted in Frisky from this board getting annoyed with me for what she classed as " diminishing Jane's achievement" . Those are facts according to her book and then each one decides how to see them. Wrooongggg again! Facts are not opinions...

    She did cure herself of several types ofstage four terminal cancer and is alive today! That's what her story boils down to...which you conveniently forget to mention...and disparage for whatever reason...none of them any good

    Your psychology is too dark for me to comment on...but I beg you... get some help for your own sake ASAP....

    My functional doctor stressed dipiridamole and hydroxichloroquine to me as particular meds useful for stage 4. I do not think COC does them but you can check with them and keep them in mind.

  • divinemrsm
    divinemrsm Member Posts: 6,621
    edited October 2019

    Frisky, from the looks and sounds of it, I think you're the one needing help for your own sake, asap.


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

    thanks Divine...I knew I could count on you...another one that has not read the book...congratulations

  • divinemrsm
    divinemrsm Member Posts: 6,621
    edited October 2019

    And actually Frisky, I seem to b invisible to you. You never mention me, never comment on any of my posts. Here I am. But apparently you can't bother to acknowledge what I have to say. You have to buzz right past me every time because what you have to say is of utmost importance. To you.


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

    That's not true Divine...I have not seen any posts indicating you are doing or interested in this protocol..and I don't comment on every post.

    I do it only when I have something useful or supportive to say...you seem to be doing very well with your tx... right?

    and please correct me if I'm wrong, I don't have an issue with being corrected when knowledge is being offered...

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