Jane McLelland protocol / COC protocol for STAGE IV members ONLY
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Thank you for the information Nicole. I’ve been taking supplements after reading James book for a month or so now. I’m still learning for sure. I am taking an aspirin a day with the PIK3CA. I think that is the biggest challenge with the book is Sometimes we find conflicting information and not sure what to take. It’s probably best to have a naturopathic doctor to help guide and sort through the information. It’s overwhelming. I will say that my alkaline phosphatase dropped from 166 to 113 in 3 weeks with supplements while on gems carb combo
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Hi,
I have just been diagnosed with grade 2 ER+PR breast cancer. I've got Jane's book but feel a bit overwhelmed.
Without sounding rude, What bit do I read to get to the answers? (I know I sound rude but I feel desperate to start the actual treatment asap and then read her story after
)
She said find out what my cancer expresses? like hedgehog signalling? Wnt/beta-catenin? Notch? TLR-4? TLR-9.... etc..? How do I get that info? I've had a biopsy, but have other tests soon...
and how to find out if my cancer is glutamine driven?
I totally don't understand the Metro map!
I must admit, I scanned some of the book, and read some bits, but in the summary it says; discover the individual metabolic drivers of your cancer by researching pubmed, type in metobolic phenotype then my cancer... so breast cancer, look for words from the Metro map, to work out whats driving it... but I looked on their and its like the alphabet threw up, it's just so overwhelming! am i doing it wrong?
How do i find out the genetic changes in my tumour?I took my glucose reading, and it's 6.3, is that ok? are you supposed to take it at certain times of the day?
Sorry for all the questions!!!
Jen
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Jen sorry for your diagnosis. Are you stage 4??? If not...this thread is specially for Stage 4 BC only.... If you are not I suggest you join Jane McLelland page on Facebook there is a lot of information there. To make your metro map I also suggest you read the book fully and then make google your best friend
.. You have to google your specific cancers cell lines. Also if you are not Stage 4... Start a thread about this topic in the Stage that your cancer is...because keep in mind Stage 4 people are blocking much more pathways than you may need to....and wont need things you may need and vice versa.
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Oh, sorry, I didn't realise
I'm not sure what stage I am yet, I'm waiting for more info from the oncologist. Thank you for the advice 
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I've delayed the COC protocol for now until I'm done with my Lyme disease meds. The SE s from the Lyme meds are kicking my butt. I went to get a NAD iv today, 6 hour drip, at the NP office to help with the hertz reaction. So about half way through they tell me uh btw did you know this was a covid 19 testing site? I'm like ah no. You think they would have told me when I scheduled that iv. No one came in for a test but jeeze. Just be careful everyone. I think about everyone often and I hope you're doing okay.
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Simone, that is concerning about the place where you were receiving the IV is also a COVID testing site. One would hope that would be advertised on a prominent warning so that patients could make decisions about whether to go there accordingly. I hope all goes on track with your Lyme disease treatment. Sorry to hear you have to deal with that on top of everything else.
Have those of you on the COC Protocol who didn't have a recent supply of mebendazole received any yet? I received a call a week or so ago from another compounding pharmacy coordinated by the COC and they sent me a 30-day supply of mebendazole, except at a much higher price. It is a pharmacy in Altanta that is helping out temporarily while the primary pharmacy sources its mebendazole supply. I called back the pharmacy and asked for the remainder of my 90-day supply now. I don't want to end up in the same position in 30 days. Also, they charged $14 for shipping. $14 x 3 separate deliveries is $42 for shipping alone. After I mentioned the shipping charges for separate deliveries, the pharmacy shipped out the additional supply at no charge.
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A new study from Walter Longo at usc showing aggressive cancers with KRAS mutations are very senstive to the combination of fasting (or fast-mimicking diet) plus high amounts of vitamin C. This work starting to get very specific in mechanistic detail, which is wonderful. Study is on colorectal cancer, however note that far fewer primary breast cancers have KRAS mutations, although these can appear with activated MAPK for endocrine-resistant cancers and late-stage cancers, are somewhat more prevalent in her2-positive cancers Tests are combining this with chemo, but their long-term goal is to find an all-natural treatment for aggressive cancers of this specific type, and this is another step towards that
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Cure-ious,
This is quite interesting. I just read the article that you linked. My question is this, though: this doesn't look like a money maker for anyone, so how/why would clinical trials proceed? I mean, for us, it would be terrific. But I would assume that Big Pharma could care less.
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True tho I suppose some in-house trials can happen at relatively well-funded cancer sites. I'm just glad they are able to tell us why and what types of cells these treatments work on. Z had very good response to chemo and she did fasting. However it obviously didn't save her, was it worth it? If they can find a very robust protocol that lets us hang out before going down the chemo road, or survive for a long time off of all treatments, it would be a terrific advance. We also know that low-carb is very helpful for PI3K drugs. I think earlier-stage cancers care a lot more about estrogen availability than sugar, but then it switches. Other cancers with KRAS mutations are aggressive, like lung and pancreatic. Our cancers start out estrogen-dependent then mutate to sometimes look more like these harder-to-treat cancers. But remember HER2-positive used to be the scariest type of MBC to get, and now they think it will be the first one with a cure. Our other subtypes just need an immunotherapy combination that works.
A new paper out in Nature shows that pancreatic cancers degrade surface MHC-1 molecules to hide from immune system, and they report that using an autophagy inhibitor to prevent the destruction of MHC-1,is successful in combination with immunotherapy, and seems to make it work for that very "cold" cancer type. HER-2 MBC cancers also have low MHC-1, not sure if they destroy it by autophagy, but if they do, a similar combination might work for them. We need the parallel insight into most luminal MBC to make the comparable breakthrough, however most ER-positive cancers have high MHC-1 so it is going to be a different trick that exposes our cancer to killing from immune system
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Cure-....that all sounds great...I have been saying for months now that HER2+ is (to me) the better one to have...not that any are good obviously but they just also came out with ANOTHER new drug said to be really good (saw it on FB name escapes me now)... anyway... The question is do we want to inhibit (stop) autophagy...if we are HER2- is that what you are suggesting? I do know that Claritan and ...I "think" DPM... anyway there is still a BIG debate on if Autophagy is GOOD or BAD and it is different if you have ACTIVE cancer.... In other words...you might want to inhibit Autophagy if you do not have ACTIVE cancer but you want Autophagy if you have active cancer....
Thoughts?
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Hi all. I had a PET-CT on Saturday after 6 months on Gemzar + COC Protocol. My first scan on Gemzar. I was worried I was progressing. I was shocked the scan was REALLY good (for me, at least; it is all relative). I haven't received the official results but my DH can view the scans in the hospital system and compare them to my previous scans. I reviewed them with him. There was one small area in my liver that lit up a bit but the rest of the liver appeared metabolically inactive. On my last scan before starting Gemzar, a majority of my liver lit up like a fire ball, highly active and metabolic. There also appears to be some shrinkage of the tumors.
I am really on cloud 9 as I have only responded this well or better to my first two lines of therapy ((1) Ibrance/Aromasin/Faslodex and (2) Xeloda) and am now on line 8ish (I have taken a few more meds on an interim basis while waiting to take another med that I wouldn't consider "lines of therapy" and have done Y90 which isn't included in that 8 number). On my first two lines, my tumors were metabolically inactive for a over a year each. Since then, most of my other therapies have improved my mets or kept them stable for a period of time or I had mixed results with some improvement and some progression. Never have those subsequent lines of therapy resulted in only having one small area that is slightly metabolic. None of my IV chemos have responded like this and I am 5.5 years into liver mets treatments.
There is no way to know for sure but I suspect that the COC Protocol is boosting the Gemzar effects. My new COC MO threw the kitchen sink at me at my last appointment and I am now ramped up to taking all four drugs at once and other than a half dose of the statin, have worked my way up to full doses of the other meds over a period of 6+ months. I started the COC Protocol when I was on Navelbine and Tamoxifen but progressed shortly after starting the COC Protocol. I suspected I was progressing before I started COC. Thus, I stayed the course to give it a chance to work. I have heard COC takes some time, like 5-6 months. It may be a coincidence, but my COC MO mentioned that he has another BC patient who has been on Gemzar + COC Protocol for over a year which is a long time for any IV chemo. Someone posted here about the COC Protocol making the cancer more sensitive to Gemzar specifically. Maybe that is in fact what is happening. Praying this will last a bit longer! Given I am so heavily pretreated, my expectations for treatments are very tempered at this point and this definitely exceeded expectations. My regular MO has kind of blown off the whole COC thing and hasn't really directly addressed it either in support or objection to it, which is fine with me. Maybe he will give it a second thought now.
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Wow JFL that is awesome news, especially in the light that this is your 8ish line of treatment...I am so happy for you!
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Nicole , in my view this part has little relevance to most MBC, because we lack KRAS mutations. It is saying if the cancer has KRAS mutation, and is being treated with immunotherapy, then an autophagy inhibitor would help boost MHC-1 levels and increase cancer cell killing.
Most ER-positive MBC do express MHC-1 on the cell surface, so autophagy inhibitors should not really be helpful. The bigger question is why ER-positive MBC cancers are not killed by the immune system? They need to define that and get a drug that fixes it so we can all get immunotherapy.
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JFL,
That's great news! I'm praying too that it lasts longer for you. It's so nice to hear positive news.
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Cure- Thanks for your insight... I agree 100%
JFL WHOOOOOO HOOOOOOOO !!!! Now ...YOU are what I would consider inspiration especially to me and my type of BC!!!!!!! So BEYOND happy for you!!!!
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JFL>...are you still having a hard time getting Mebedazole??? I just saw a COC advertisement on FB saying its now available.....
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is anyone else still on the COC protocol?
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Simone,
JFL posted something in the last day or so -- she is still on it and doing well. See above.
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Wow, JFL, "I suspect that the COC Protocol is boosting the Gemzar effects", also another patient mentioned by your MO - we have to take notes! Saulius
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Simone, I am on it. Have not managed to increase my doses - gets to onerous to take tablets from it more than once a day 😏
I know , lazy.
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How are you doing on COC? Any success? I might go back on the protocol after I'm done with Lyme disease meds. Not sure.
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btw I still have some mexbenzole pills if anyone needs them
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Simone, I am on it and think it is helping. Gemzar + COC Protocol currently going well after 6 months. Just had a really good scan a few days ago. Surprisingly good. I started COC Protocol last summer and more recently boosted up the Protocol doses per COC MO's instructions. I am now on all 4 meds simultaneously and am up to 3 metformin a day. The only dosage the MO is holding back on is the statin. I am currently at half dose. Perhaps he will boost that at my next appointment though.
Nicole, I was able to locate mebendazole from a stand in pharmacy the COC is using in Atlanta. Thanks for asking. I had to pay more but at least I have it.
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Hi JFL, if you don't mind my asking what dosages do they have you on now?
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Hi GreekNinja, copied below is the most recent 90-day prescription summary the COC sent to me. My atorvastatin dose is a half dose. Most people take 80mg/day, I believe.
1. Metformin Extended Release 500mg three times daily with meals for 90 days
2. Atorvastatin 40mg one tablet every bedtime for 90 days
3. Mebendazole 100mg daily with breakfast or lunch for 90 days - currently out of stock; our nurse team will be reaching out to you with potential options
4. Doxycycline 100mg daily with breakfast or lunch for 90 days.
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I got an email today from COC that they got approved to add a new drug but didn't say what it was....anyone know?
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Nicole I haven't heard about any new drugs. I did receive an email that they are now using a special type of mebendazole called mebendazole polymorph-c, which is believed to be more effective. They are also offering a few of the drugs via a transdermal patch rather than a pill for persons who have difficulty digesting the pills. If you hear more about a new drug, let us know.
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Will do JFL.... here is what the email said:
New COC Medication - Available through Care Oncology for our US Patients
It has taken nearly 2 years but we are pleased to announce a new medication Care Oncology (US) has sourced that may be useful for some of our patients.
If you are interested in learning more about the potential benefits of this medication to your COC protocol, your Care Oncology Oncologist can assess your eligibility at your next follow-up appointment. If you are not currently a Care Oncology patient, schedule an appointment with a case manager for more information on eligibility for the COC Protocol and this new medication.0 -
Very interesting. I did not receive that email. Strange they didn't just come out with it and state which medication it is!
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Right? and strange that I got it since I am not currently a patient with them...I also saw someone else posted that they got this email as well on FB....
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