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Jane McLelland protocol / COC protocol for STAGE IV members ONLY

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  • exbrnxgrl
    exbrnxgrl Member Posts: 4,734
    edited October 2019

    Nicole,

    Yes, my bone met is a grade 1 and that certainly doesn’t hurt, but that in itself is just part of the puzzle. We’ve seen members in the same position progress too. But my point is that I am comfortable and happy with eating a mostly healthy diet and enjoying life without the stress of compulsion. I rarely drink alcohol, don’t smoke, don’t eat fast food or processed foods, mainly eat fruits and veg with some animal protein.

    It’s just a different way of looking at bc and one that fits me and the way I have chosen to live. I have no death wish but whether I live another 8 months or 8 more years, I will live on my terms, my way. I simply feel that my diet should not be a source of added stress

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

    I like it..and that is why I am trying to find that balance for myself. I don't want to feel guilty because I have pasta one night a week...etc...and I also don't want to deprive myself. SO basically that is my goal to try and find that and in turn it will relieve some stress off me ..I am sure of that.

  • pipers_dream
    pipers_dream Member Posts: 187
    edited October 2019

    I read Janes book too and I’m slowly working thru the info but the main takeaway I get is that metformin, baby aspirin, atorvastatin or lovastatin or simvastatin, mebendazole or nebendaxole, and doxycycline will help anyone with cancer. Beyond that you need to work out the individual pathways your cancer needs to feed itself. I’m ILC with pleomorphic bodies and I’m running into walls because for some reason, ILC isn’t studied as much as other types of BC but I did find out that it doesn’t use the protein pathway as much but it does use the lipid one. I do have two questions that arose from everyone’s posts:

    For those who said their MOs recommended against IV vit C, why? Did they ever give a reason? The reason I’m wondering is because when I was doing IVC, I heard many stories of people who had various types of deadly cancers who had way outlived their life expectancy. OTOH, taking the pill form of C is not recommended

    The other question is about mebendazole...how are you all getting that? My understanding is that it’s not even available in the states anymore except as a $400 one time only pill. Is everyone heading to Mexico or mail ordering? I did try the panacur C but I don’t think I used it long enough or in a high enough dose. I have read that the reason it works is because it’s a microtubule disruptor and parasites and tumors both have microtubules.

  • simone60
    simone60 Member Posts: 952
    edited October 2019

    Hi piper. A lot of us are using COC to get the meds presribed. Some are lucky enough to have a primary DOC prescribe the meds instead which saves money. You can Google COC and their website will come up.

    I can't speak on the C ivs. I have had a couple now. I timed those with my 3&4 week of doxy.


  • divinemrsm
    divinemrsm Member Posts: 5,996
    edited October 2019

    Nicole, reading your signature line just now, I forgot how new you are to a stage iv diagnosis. I read that you said Ibrance isn't working for you any more? Have you moved on to another line of treatment? (Questions totally unrelated to the thread topic). I see toomthat you were dx with dcis in 2014. Wow, it must have been shocking to learn of the progression a few years later. So Ibrance was your first line of treatment? You still would have a number of other options to try with the very real possibility that one or more would work for you.

    I agree, organ involvement and cancer grade make a difference. With you being only about 7 months with mbc, I can understand your questioning of food choices. I did the same thing that first year. I made some diet changes within reason, nothing drastic. Drink more water, cut out diet soda, upped fruits, nuts and vegetables. Did you read Radical Remission? Its insightful and inspiring,

    Your mom sounds like a real dynamo! How sad about your sister being killed in a construction zone.

    I don’t mean to hijack the thread topic, it just helps to get a better understanding of where you’re at in dealing with mbc.


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

    Hi Piper, I'm someone that has had the prescriptions for the COC medications provided by my primary doctor, after I produced the published studies as to their validity and likewise I'm also ILC.

    But I'm taking FZ instead of the MB, because of Joe Tippens success story and also because I can buy it over the counter and bypass all doctors.

    I started in May with 1gm, 3days on and 4 off. After 3 months I increased the dose to 2gm and lately to 4gm 5days @week...I'm not sure if any of this will be effective, but I feel it's worth trying...


  • olma61
    olma61 Member Posts: 1,016
    edited October 2019

    Reason not to use IV Vit C — My MO told me in the beginning not to use any anti oxidant supplements while on chemo because chemo uses free radicals to kill the cancer cells and anti oxidants destroy free radicals.

    Beyond that, even if not on chemo, they believe anything that protects healthy cells from damage may also be protecting the mutant cells. She won’t even give me an OK to take an occasional high dose C tablet to relieve constipatio

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

    Here's the latest and weirdest scientific news for you....Intelligent slime that learns, can teach, and knows how to evade dangers...oh..and when attacked can heal itself in within minutes....enjoy

    It isn't an animal, a plant, or a fungus. The slime mold (Physarum polycephalum) is a strange, creeping, bloblike organism made up of one giant cell. Though it has no brain, it can learn from experience, as biologists at the Research Centre on Animal Cognition (CNRS, Université Toulouse III -- Paul Sabatier) previously demonstrated. Now the same team of scientists has gone a step further, proving that a slime mold can transmit what it has learned to a fellow slime mold when the two combine. These new findings are published in the December 21, 2016, issue of the Proceedings of the Royal Society B.

    https://www.sciencedaily.com/releases/2016/12/161221090246.htm

    Imagine you could temporarily fuse with someone, acquire that person's knowledge, and then split off to become your separate self again. With slime molds, that really happens! The slime mold -- Physarum polycephalum for scientists -- is a unicellular organism whose natural habitat is forest litter. But it can also be cultured in a laboratory petri dish. Audrey Dussutour and David Vogel had already trained slime molds to move past repellent but harmless substances (e.g. coffee, quinine, or salt) to reach their food. They now reveal that a slime mold that has learned to ignore salt can transmit this acquired behavior to another simply by fusing with it.

  • olma61
    olma61 Member Posts: 1,016
    edited October 2019

    Ever see that movie The Blob...that's what I'm reminded of now. (re: the slime mold)

    Singing

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

    Divine...awww Thank you so much for your condolences about my sister. That was/is very hard...especially now all i could think of is my sisters boys (they are grown like my son) but ...I feel like me and my mom are their only living memories of her..... :( We sound and looked exactly alike.. :)

    Yes...it was a shock...finding out Stage 4 especially because when I got re-diagnosed we thought I was stage 2....it wasn't until 2 days before I was set to leave CA to return back to Hawaii (husband stationed there in the Marines) that we found out it was in my liver...it was in hip and sacrum too but the CT didn't show that...THAT blow came about 4 weeks after finding out about the liver. So yes...it is still very new and raw for me. I still have days where literally not more than 10 min go by where I am thinking I am going to be dead in a couple/few years..."few" if I am lucky.

    Ibrance...So I started it basically May 1st...at that time they thought I had 3 mets in liver and 2 in bones...I knew 1 month in it was working...because all the pain I had in my lower back and left hip for the past year and half was gone!!! My MO in NYC had me on Letrozole/Ibrance/Faslodex...most don't do faslodex with Let...I know...we did and it was working...plus my Foundation One said it would be sensitive to Ibrance...well after 3 months PET showed 2 tumors in liver shrunk and the one in sacrum almost completely resolved and 1 in hip didn't even light up....we thought...GREAT its working.. Then Sept...I started having pain again in my left lower back and my itchy skin condition (that I had for a year and half) also returned...sure enough we scanned 2 weeks ago now all tumors have grown in bone and liver and liver now has 4 tumors... I will find out treatment plan tomorrow...I go to Interventional radiologist today at Hopkins then to MO tomorrow...it's looking like Xeloda....I just hope it works...

    Nicole

  • LoveFromPhilly
    LoveFromPhilly Member Posts: 1,019
    edited October 2019

    Nicole - I have heard tone and time again from my MO and from research, that the grade at this point doesn't really make a difference once the treatments start. The aggressiveness can shift, change, slow down, speed up. It is unpredictable. The grade we are given at the time of the biopsy shows a captured image in time, that doesn't tell the whole story of the future.

    I like reading these discussions. Having gone through intensive grad school integrative oncology nutritional training, and now having MBC myself (also grade 3 my friends) and having done it all "right" before with regards to diet and lifestyle etc etc, I am still where I am today. <br>

    I think that genes play a huge role in it all. More than we think. There is an interesting field of nutritional epigenetics that is emerging but in my educated guess, the genes over-rule the diet. <br>

    I am in agreement with Ms Divine and exbrwngrl and I don't want to stress at this point or deprive myself of enjoyable things. I am, by nature, a "healthy eater" as I love healthy foods and don't enjoy processed foods and never really have. I don't have a huge sweet tooth and never liked soda or red meat too much. However, I can't offer any more of my time to stressing over food and diet. I spent too much of my life thinking and worrying and probably being orthorexic to some degree. I can't live that way anymore.

    Sure, some of us would benefit from healthier eating and more exercise...that never hurts when we are out of shape or engaging in unhealthy and harmful behaviors. If that is happening, then seek help, make changes.

    In my work as a nutritionist, I see people harming themselves more than helping themselves quite often when trying to do these kinds of thing alone.

    Nicole - I feel MUCH better on carbs. I feel much worse on a low carb diet. That it just me. Others thrive on keto or paleo. I believe I need a little bit of sugar every day. Real sugar!! It is not our enemy. It is not the causation of cancer. Overdosing on it can cause inflammation in our bodies which, if gone unchecked for too long, may end up being linked to the development of cancer.

    Dinosaurs had cancer and they ate in the most natural state the planets ever been in.

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

    Philly just read your post outloud to my husband as we are in the car driving to the Interventional Radiologist appt.

    I love everything you said and how you said it. I was a few times in my posts above saying similar things butbi definitely didnt simplify it or say it as eloquently as you..so thank you.

    Very interesting what you said about grade changing slowing down ..speeding up etc...

    Thank you for your post. :)


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

    just incase some of you do not go in liver mets thread.

    Ok ..very overwhelmed right now. Just met with the Interventional Radiologist..he said I would be good for surgery to remove the tumors or for the cryoblation..but the cryo would need to be done now while the tumors are 2cm - 3cm once they reach 4cm they cant do cryoblation. Hes only seeing 3 tumors not 4 he sees 2 hemangiomas....he needs to talk to my oncologist to see what would be best depending on what treatment she wants to do. He also said there isn't much down time with cryo...and he can do it while on chemo and that he can get a biopsy of tumor if he does the cryo. He knows my appt is tomorrow with the oncologist at 1pm he is going to try and talk to her before that. He did say that 1 of the tumors is in an area that there would be a 10% he cannot reach it with cryo..its down like towards the bottom of my rib cage (that is where I always have the pain) I asked about surgery and ya know when the part of the liver grows back with cancer cells more tumors pop up..he said the area they would be taking is so small it will not even grow back. He said that occurs with bigger tumors/area. With surgery he said they can get all the tumors.

    We are very overwhelmed and were not expecting this...we thought he was going to say get stable first. I would love for those of you that pray to please pray for my husband and I and my doctors. We want what ever God decides...please pray that the Lord opens the door to the correct procedure and gives the doctors a clear leading on what is best for me.

    I will update tomorrow after we see oncologist

  • olma61
    olma61 Member Posts: 1,016
    edited October 2019

    Praying for you and your husband, Nicole. Stay the course.

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

    Nicole, I'll be praying and thinking about you...may you get the right treatment...

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

    You are in my prayers Nicole.

  • LoveFromPhilly
    LoveFromPhilly Member Posts: 1,019
    edited October 2019

    holding you and your husband in my thoughts Nicole

  • divinemrsm
    divinemrsm Member Posts: 5,996
    edited October 2019

    Nicole,yes, it sounds overwhelming. You are in my thoughts and prayers. You husband and family, too.


  • simone60
    simone60 Member Posts: 952
    edited October 2019

    Nicole,

    Praying for you and your family. God is always by your side. I am confident he will take care of you.

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

    Thank you all for your prayers! I felt like God was sitting right here with me as I read all your comments to me..wow that is so beautiful. I seriously consider you all my dearest friends...and even though we all may not agree all the time I know that we ALL love each other and are all fighting this TOGETHER!!!! The proof of that is in all of the comments, prayers and well wishes we all give to each other!

    I just want to say I am grateful to ALL OF YOU and you will all be in our pocket today at the appointment.

    Crossposting so all can see :)

  • snooky1954
    snooky1954 Member Posts: 850
    edited October 2019

    So sorry Nichole, I did not see your post. I'm praying for you now. God is good , HE will hear us.

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

    EDIT: at bottom Dr. just called me at home


    I just got back. Wow..another great appointment with her. Thank you for all the prayers!!!! So surgery is out. She spoke to the IR and they agreed that Cryo would be best also because she wants the biopsy she said she needs to make sure I have not mutated to HER2+ or TNBC.....that was hard to hear...not gonna lie..my heart sank. Lot's of info though ..so here we go.

    They spoke about Immunotherapy with the Cryo..there is a trial that is FDA approved for TNBC its Atezolizumab -(Tecentriq) you must be TNBC or have the gene PDL1. Turns out on my first Foundation One I did have the PDL1...but that alone wouldn't get me into the trial. (she also mentioned that many people that are HER2- have that PDL1 and it does NOT mean they have mutated to TNBC) however, if my status has GOD FORBID changed to TNBC then I could get in the trial and I probably could even if I am not TNBC with some finagling (she said) since I have that gene. BUT...it can take weeks or month or more to get into it and we cannot wait for that. She wants to start chemo asap. She will wait until after the cryo IF he can do that within 2 weeks...but if he can't get me in for a month or something then we will start now. If we start chemo before biopsy we will do Xeolda but said next line will be a Taxane... :( Scared.

    For those "cure-ious" that have mentioned about possible ESR1 mutation..she said nope not likely because faslodex works on that and I was on Faslodex. She said that the fact that I didn't respond to Ibrance/Faslodex etc...tells her I am endocrine insensitive :( ;( again I am seeing TNBC... :( Praying I am wrong.

    She is going to try and speak to the IR today or Monday and let me know what he says. She also wants me to get a consult to have ovaries out...she checked my hormones and feels my overies are still trying to and are possibly making estrogen..she wants to switch next month from Lupron to ughhh I forgot the name of it....???

    Some positives...: 1. Now that I am off Ibrance my blood pressure is high again..so I jumped in ladies and asked if she would prescribe a blood pressure med....she said YES!!!! Lasinapril?....any indications I should know about?

    2. I figured since I jumped in why not just go for it and asked for Metformin.....she said YES!!!!!

    3. Drum Roll please... I figured ok I got nothing to lose so I asked how she felt about me getting IV Vit C on the weeks off of chemo...she said "I wont tell you, you can't...but I don't know that it will help...so if you want to do it on your own ok"...

    So Yippy...now ...just praying my body cooperates ....*smirk*

    Saulius...I think the ALA is working my bilirubin was 1.4!!!! She actually said my liver numbers look GREAT! So thats it...wait and see now.

    She just called the IR wants to do the procedure next week Cryo!!! AMEN thank you Lord

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

    Sounds like a good solid plan. The cryoablation sounds better than surgery to me. There is a chance that cryoablation might stir up some immune response to the tumor, as the dead tissue remains in your body. Great news about the metformin, and at least the okay to do IV Vit C if you choose to. The xeloda worked really well on my wife's liver tumors. Good reason to believe it will work for you as well.

  • divinemrsm
    divinemrsm Member Posts: 5,996
    edited October 2019

    Nicole, thanks for the update. Its so good that you don’t have to have the surgery. I’m not surprised to hear that, it seemed a rather sudden choice. Also good to know you have confidence in your oncologist. Plus then the high blood pressure meds and metforim, well you now seem to have some additional things that can work in your favor. You can head in to the weekend feeling hopeful.


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

    Husband and Devine...Thank you for your input I agree with everything you both said. Husband..YES that is the thing about cryo...it triggers a natural immune response...I will maybe up the ALA just to 3 pills from 2 to help the liver??

    Also I think I am going to only do the metformin to start 1 x day and the berberine 1 x a day and see how my bowels are... Then if they are bad I will ask her for the metformin ER... I also think I am only going to do the blood pressure med 3 x a week to start and see how I am?

    UPDATE: JUST went to MYCHART...got a date for procedure...lol

    Oct 28th 1 week from Monday :)


  • olma61
    olma61 Member Posts: 1,016
    edited October 2019

    Glad you have a plan now, Nicole, and that things are moving along quickly for you. Waiting is the worst.

    About BP med lisonopril - it is an ACE inhibitor, some people get a dry cough from it. Sometimes so frequent and intrusive that they switch meds.

    I've never been on it but I am on another ACE inhibitor (Losartan) which is less likely to cause the cough side effect. I don't really experience anything at all. The downside with Losartan is all the recalls on the generics lately. : (

    Is lisonopril part of COC or another of these anti-cancer, off-label med protocols?

    I have heard that beta blocker Coreg might have an anti-cancer effect, but don't know anything about ACE inhibitors and cancer.

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

    Ok...so on topic....can anyone tell me what they know about when and what to take the following supplements with?

    I would like to take

    Berberine 1 x a day (to start) does this need to be taken with a FAT? > Like the way Fenben does?

    Metformin 1 x a day (to start) So I would do this at night and berberine in the morning or vice versa anything I should know about this one?

    Lisinapril (if I can tolerate it...) I am going to start 1 x a day (morning, with my magnesium, ALA, Vitamin D3 and claritanD)

    Any info I would appreciate it.

  • simone60
    simone60 Member Posts: 952
    edited October 2019

    Nicole,

    I don't know too much about most of those. I take 1 metformin with breakfast and 1 with dinner. For dinner I add a baby aspirin and fish oil.

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

    Simone..I was gonna do the berberine at dinner so I take it with food..but maybe I will take that in the AM with some almond butter..and Fenben (bc Fenben needs the almond butter/fat) Then I could do the metformin at breakfast.

  • simone60
    simone60 Member Posts: 952
    edited October 2019

    I think that would work. I take met with a little fa t e.g. Fish oil. I think d3 is absorbed better when takin with a little fa t also.