Jane McLelland protocol / COC protocol for STAGE IV members ONLY
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I got the same email as Nicole and I'm also not a patient. I was hoping that someone who is would know about what drug they are talking about -- but I've got no clue.
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I had my COC MO appointment around 2 weeks ago and nothing was mentioned about a new drug. I would like to get on it if there is a new drug.
My alkaline phosphatase shot up last week to an all-time high and my liver enzymes and tumor marker went up too. I decided to stop the statin and the mebendazole until my next labs to see if they go down. I am a bit freaked out about the alkaline phosphatase and am suddenly really tired. I am on Gemzar, which increases alkaline phosphatase and liver enzymes, plus the COC can increase them as well. However, I am probably progressing on my current therapy. I will now have a PET scan this weekend and will likely be switching to Piqray at my next MO appointment. I do think that the COC protocol has helped me to remain on Gemzar longer than I would have without taking it. It has been working for 9 months, which ties for the longest an IV chemo has worked for me, 5.5 years into treatment. Doxil plus Y90 also worked for 9 months a few years back but that was likely mostly due to the Y90 and not the Doxil so not even sure Doxil really counts.
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JFL...my liver numbers were the highest ever when I took mebedazole....
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Someone on facebook, and of course we can't take this as gospel, said it was a form of ibuprofen. Sorry, but I forgot the name. It's some formulation of ibuprofen. Can't say whether that's a fact or not.
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might it have been Flarin? That's a newish formulation of ibuprofen in a lipid base.
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Yes, thanks for jogging my memory, Flarin was what someone posted. Once again, not saying its a fact, just that they posted it.
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yes I had it prescribed to me back in spring in addition to the usual ones.
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Thanks for the info. I am going to email the COC about it. Not sure why my COC MO didn't even mention it.
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JFL.... ok so they were saying on the FENBEN FB group that it has been researched that Fenben does not elevate liver enzymes the way mebedazole does. One person even cited her doctor researched it as well ..... she does have good liver enzymes though but she also used Apricot Kernels to rid herself of 1 liver tumor (don't believe it was breast cancer) ...she did say the apricot kernels did make her liver enzymes off the chart...but yea.
I am thinking about possibly adding in the fenben..but I NEED to tell my MO and she is NOT gonna be happy not after the mebedazole... I may do it next month after I scan and not tell her then if they are elevated I will tell her why. Not sure.
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Nicole, interesting information. Where will you obtain fenben? I worry because it is not standardized for humans like mebendazole. Everyone is doing their best to guess the proper dose. I doubt drugs for dogs and horses go through anywhere near the same quality standards as drugs for humans. However, many have taken it here with no issues. I am hoping my liver enzymes go back down on Piqray. I started it today. The liver enzymes have been elevated since I started COC Protocol a year ago but recently they jumped higher and my alkaline phosphatase jumped to an all time high. Part of that was from Gemzar, part likely from progression, on top of the mebendazole and statin. Due to liver enzymes, I didn’t start the stain until 3 months into my treatment and never made it past one half a dose. However, I do take all 4 of the primary COC drugs at the same time. No alternating between doxy and mebendazole. If I cannot resume mebendazole and the statin, I may push to start taking the new COC medicine which is an NSAID
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Yea..for those of us with elevated liver enzymes its hard to stay on "extra" stuff besides our conventional treatments from our MO's. I have (bought a long time ago) the fenben that Joe Tiippens took the pack for dogs and there is tons more on amazon. believe it or not I heard that causes the LEAST problems with liver enzyme elevation...yea I know its for a dog..but like you said...there are A TON of people on it and doing fine. Frisky also took it here for a while she was fine too.
My friend Lauren that I met through the Metro Map thing on FB and we met personally here where I live too (she died May BC Extensive Bone Mets she was only 1 year out well almost 2 from Stage 4 Diagnosis) she said something that made a lot of sense and she was really smart she basically designed the map that this one whole group now uses...anyway she said that not to stress if we cannot take the drugs to block the pathways now...but that if we can get NED...then it is very important to be blocking the pathways..because right now we are in a kill phase... I am with chemo...so if I can kill everything then block that would be great. So I am not stresses too much that I am not taking everything on my map.
Are you taking berberine and Metformin or just one? If just Metformin how much do you take? I take 500 mg 1 x a day....I don't know that , that is enough...
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I take metformin 500mg 3 times per day. I phased up from 1 time per day to 3 over 6 months or so. I do not take berberine
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Thanks JFL
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Hello All.. Im Amy and new here.. I have been Dx with Bone mets just recent 10/12 I havent done any treatment yet as I am waiting on pathology still.. The wait is ridiculous! Ive had one zometa infusion. In 2012 I was dx with stage 3 BC beat that with chemo and rads plus a healthy diet and some supplements. 8 years later here I am mets to my spine, ribs, chest plate and pelvic bone. I have already started on a high alkaline diet and started on many supplements to support my immune system and bones. On top of this I ran across Janes book and LOVE IT! Which lead me to calling the COC I am suppose to have my first call with their oncologist on the 18th. Im hopping this thread leads me to good info and experience with this protocol.. I just dont trust chemo and rads alone this time around.
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ABC what kind of BC did you have when you were stage 3?
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ductal 3 times positive Stage 3 right side lymph node involvement
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stage 3 ductal 3 times positive with lymph node involvement. Cancer was on my right side.
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So you are triple positive?? Are you on Herceptin?
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are you suggesting the few week inbetween chemo treatments? Or the time after a full cycle?
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nicholerod yes my original cancer is 2012 was triple positive! However my biopsy done 10/26/2020 to my pubic ramis is not back yet so I am unsure of what is going to happen as far as a treatment plan. Back in 2012 I did do a years worth of herceptin. I also took 7 months worth of tamoxifen but my body would not tolerate that so My doc took me off it and at this point I was considered NED. Now here I am 8 years later and told I have multiple osseous lytic lesions. Petscan 10/19/2020 showed many!! Biggest is my T3 spine which is basically destroyed due to cancer. I am beyond frustrated at the time it is taking for pathology results. In my opinion it's the reason most are addicted to xannax and percocet. Since I left the office from my biopsy I have not had once call or any offers for additional health concerning behavioral. It was more like.. here is a jar of xannax and percocet we will see you November 16!!!!!😮😮😮 I immediately changed my diet, started Jane's book, called the coc, and am trying to get approval on my insurance to get into Moffitt Cancer Center in Tampa Florida.. also takins suppliments to help my immune system and bones!
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ABC, another good book to read is the Metabolic Approach to Cancer by Dr. Nasha Winters. She has been living with stage 4 Ovarian cancer for 29 years.
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Simone thoughts on Berberine with Metformin....not at same time of day...but about taking both...
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Hi Nicole. I don't take either one anymore. I had stopped most of my supplements when I was being treated for Lyme disease. Now that is better I was thinking of starting the coc protocol again. I have enjoyed not taking so many pills. I never took both metformin and berberine at the same time. Berberin upset my stomach but I do miss the metformin. I've read others have taken them both. I think that would be hard on your liver.
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hi Simone - did not realise you had Lyme disease and were treated for it. When were you diagnosed and what made you ask for tests and when were you treated ?
I am taking my COC medication on and off - never managed to get in with metformin 3 times/day so sticking to 2. Went off all supplements back in March when started to get strange breathlessness and other weird symptoms then introduced them one by one back. Was too busy/lazy/unwilling to pay to organise a review appointment with a new prescription and then to order it . I guess as my scans show continuous resolution I did not bother that much ..
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I needed help with this...but...so a friend explained it like this:
Metfromin and other AMPK signalling activation strategies are doing more than one thing- all busy contributing to your healing on many fronts AND because of the cleverness of cancer and the it's constant need for energy it will look for fuel when it needs it...even if to just remain dormant rather than die. In our case cholesterol is this alternative fuel source that our cancer will go for. So what the research has unpacked is that Metformin will UP-regulate the metabolism of fatty acids and this up-regulation can help the cancer cells that might otherwise be snuffed out from estrogen deprivation, to survive. So the key is to look at your Fatty acid pathways on your worksheet/metro map and make sure you have ample coverage of FAO, Mevalonate FAS, SREBp's 1 and 2 ..make sure you steer completely clear of the bad oils, the fried foods etc..
Ok so on my map ...the things that cover the Mevalonate, FAS SREB 1 & 2 are :
Fatty Acids
Acetate
ACLY
F.A.S. (activates HER1/2)
F.A.O.
SREBP-1
Mevolonate
SREBP-2
Berberine
Berberine
Hydroxycitrate
Metformin
Doxycycline
Berberine
Statin
Dipyridamole
Garcinia Cambogia
Low Dose Aspirin
Mildronate
Reishi Mushrooms
CholestPure 2
Luteolin (Celery Juice)
+ R-Lipoic acid
Berberine
Citrus Bergamot
Citrus Bergamot
Statin
Omega 3 DHA
Omega 3 DHA
Tocotrienols
Berberine
Omega 3 DHA
I don't want to take Berberine though.... so this really sucks because now I have to worry if I take just the metformin I am exposing the fatty acid pathway
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Hi Anotherone. Glad to hear you are doing well. I was having neurological issues (numbness in the arm, vertigo, bells palsey) and inflammation. I researched Dr Google and found chronic Lyme disease can cause those symptoms. We use to live near woods and deer would visit our backyard all the time so Lyme disease made sense to me. I found a Naturopathic doctor who specializes in treating Lyme disease. He ordered several tests and they came back positive. I took about 20 pills a day for 7 months. I'm so glad I found him, I feel so much better.
Nicole,
Interesting article, thanks for posting it. I've been following a clean keto diet to try to keep my glucose levels down without meds. I wonder if that is doing more harm than good.
Does taking berberin bother you? Can you pulse it and pulse metformin and still get the same benefit?
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glad you feeling better now !
20 pills/day for 7 months!
😕
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Nicole, I am not sure if different types of breast cancer respond differently to metformin alone, but my wife has been on metformin for the whole 4 years she has been metastatic stage IV. I find Jane McLelland's suggestions to be exceedingly theoretical. COC protocol always prescribes metformin for breast cancer patients, along with the statin, antibiotic and mebendazole. Observational studies have linked use of metformin alone with increased survival in breast cancer patients. Perhaps another ingredient can improve on that, but that is speculative. I wouldn't readily accept the concept that metformin alone causes any harm.
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Husband I agree with you but you do realize that paper I posted had nothing to do with Jane right?
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Nicole,
I thought that paper was interesting. However, I am curious why you do not want to take berberine? Is it bc of the constipation side effects?
I was taking berberine in the morning and metformin in the evening. I've stopped with the berberine (at least for now) because I'm sick of taking pills, but still taking the metformin. My internist put me on that sort of prophylactically because we discussed some reports that were out at that time, echoing what Husband is saying. But that article does raise a few concerns. For me, though, I am pre-diabetic and so the metformin serves several purposes. But food for thought.
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