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Monarch View Drop Down
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    Posted: Feb 09 2020 at 11:44am
I am going to pose this question to all TNBC users and especially Donna123, for her vast knowledge of trials and abstracts.  

I was put in contact with someone that was Stage III left breast, 8 cm with node involvement (axillary).  She is being treated in the same "system/clinic" I am.  After all conventional methods, they reported she was cancer-free in August 19 I believe.  Not 30 days later, a bone scan revealed the cancer had meted to her pelvis, ribs, spine and skull.

She is now Stage 4 and not in any clinical trials.  They have her back in the chemo room doing Euribulin.

She had a friend that convinced her to try an unproven method of repurposing of drugs.  The site is careoncology.com  I believe it is a UK org.

Her friend was Stage 4 TNBC.  She has been on this cocktail of antibiotics, lipitor, anti-parasitic med, and metformin for a year and I believe she is NED now.

The woman I spoke with has only been on a protocol for six months.  She said her lesions were "brighter" and the doctor cannot tell if the cancer is getting stronger or it is killing itself off.  

It is a phone call to a nurse.  If you accept, it is $800 and a doctor calls you.  They set you up on a protocol of these type drugs and I believe it costs $300 a month for 90 days.

I started researching some of these drugs as they related to breast cancer and there is evidence that there might be something to this.

Has anyone done this protocol or heard about it?

Monarch
DX IDC, Metastatic Stage III, 6/6/2019, Nodes pos, 5.6 x 3.3 x 3.5 left breast. Ki-67 90%. AC x 4, T x 12, Partial Mastectomy and Targeted Axillary Dissection, Thyroidectomy,
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Plume View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Plume Quote  Post ReplyReply Direct Link To This Post Posted: Feb 15 2020 at 3:03pm
Hi Monarch
Since nobody has answered your post, I am hesitant of telling you my thoughts on this because I am really very puzzled by the information on the site.  And I did read it carefully, including the links they provide, the profile of the company, etc.
Although the company is, as you say, based in London, many of the personnel are from the US.  My ignorance of the US health service might be a big obstacle to understanding the whole set up.  But I have decades of experience of the National Health Service of the UK and experience as a patient of the French health service.
Firstly, why my confusion?  Well, although they say that their protocol is based on reseach, they do not in fact quote a lot of research relating to breast cancer patients.  It is true that the drugs used in the protocol are all well known drugs used for other medical conditions so, in that sense, the drugs have been tested and are safe to use for those conditions that they are targeted at.  I will need to be convinced that they are indeed safe and EFFECTIVE for use in conjunction with patients like us, with our differing chemotherapy combinations.
TBH, I see that the top high-ranking people all seem to have an impressive background in ...er...making money rather than on treating cancer successfully.  I rather think that much of the money would in fact go to the owners.  Indeed the drugs are not expensive and the protocol, from my understanding is a mixture of a handful of drugs in different doses.
I know that in the US, you are used to paying for your own medical treatment or for your insurance to pay.  Both in the UK and in France, cancer patients do not pay for their own treatment; we merely pay relatively small amounts for seeing say a doctor with special qualifications or a private room in the hospital or something towards transport to and from our appointments.  In that context and if the protocol is so effective, why is it not available on the (free to patients) health services of the UK and France which both run financial deficits but are well rated by the WHO.
On top of that, I don't know, from the information given, how long you are supposed to stay on the protocol.  For 3 months, 3 years, until you have been NED for whenever?  Could prove very expensive indeed.
As I have admitted, I am puzzled by the information on the site and I do harbour a fair bit of cynicism of claims that company makes.  BUT, that is only my personal opinion so I do hope that you get a better informed opinion from someone else, preferably someone who has actually used the service.
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Mariote View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Mariote Quote  Post ReplyReply Direct Link To This Post Posted: Feb 19 2020 at 1:40pm
Hi. I'm going to comment but *disclaimer* I'm no expert, just my experience. First of all I am not in the COC protocol ( that's what's called) but we plan to be soon.
Plume is right. The COC is run by business people out to make money. They have "franchises" in the US that do consultations over skype. From my queries to various users, the 4 off-label drugs are always the same and always the same dosage, regardless of the cancer type or condition. Granted, my sample size is very small but that's what I have been told by actual users. The "consultations" seem to be a fairly well rehearsed selling pitch. I believe the COC protocol is loosely based on the book "how to starve cancer"by Jane McLelland. I don't know if she's affiliated with the clinic or the clinic just used her research.
Having said all the above, the COC protocol has resulted (again, by my own limited research, hearing from first source users) in several success stories. It's not meant as a stand alone treatment but adjuvant to chemo. I read there are clinical trials in progress. The "consultations" are horribly expensive for the first "assessment and diagnostic" but subsequent ones are cheaper, around 300 or so bucks. They are mainly meant to write prescriptions for refills of the 4 drugs. You'd get the very same from an understanding GP and pocket the savings. Somebody even called the COC their "drug dealer" for the 4 rx drugs. The COC is meant for life I guess, once you achieve remission. It has a solid scientific base, Jane in her book lists many trials and studies (I have not read it).
My whole problem with Jane and COC in general, is that I get irked by ppl making money out of cancer sufferers. It's despicable, even though the protocol itself may be a life saver. I know that if we were cured from cancer, we'd dedicate our efforts to help people without desire to become rich in the process. 
We'll try COC with help from my GP for Rx, screw the clinic, plenty of ppl doing it on their own.
My 2 cents.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Monarch Quote  Post ReplyReply Direct Link To This Post Posted: Feb 19 2020 at 3:27pm
Plume and Mariote,

Thank you for both of your input on this.  I so appreciate the time you took on this.  When the woman told me about it, I thought it sounded a bit sketchy.  She said it cured her friend who was in Stage IV.  

I cannot take one of the drugs (metformin) so, I didn't know if they had others.  It sounds like a for profit trying to capitalize on those that are doing everything in our power to survive this dreadful disease, and they are taking four very generic and cheap drugs and offering them as a "cure" for all cancers. 

I did find individual supporting evidence for each of these drugs regarding decreasing TNBC.  Even the US government had abstracts to back the usage up. Which I found SHOCKING!

The concerning part is yes, this COC Protocol is supposed to be for life.  I cannot imagine how healthy anyone would be if they took Lipitor and Doxycycline for life.  At some point, I would think one would become unresponsive to the Doxy, as one would, with any antibiotic taken for a while. 

Mariote, if you decide to take the protocol, let me know how you fare.  Good luck!

Monarch
DX IDC, Metastatic Stage III, 6/6/2019, Nodes pos, 5.6 x 3.3 x 3.5 left breast. Ki-67 90%. AC x 4, T x 12, Partial Mastectomy and Targeted Axillary Dissection, Thyroidectomy,
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Mariote Quote  Post ReplyReply Direct Link To This Post Posted: Feb 19 2020 at 9:58pm
Monarch, don't get me wrong, COC has its merits, as I said it's had success stories and it's the subject of medical trials, the thing is, I am by training, very science based and distrustful of unconventional things by nature. I'll keep you updated in how our adventure with COC goes. This is the same approach as the Fenbendazole protocol that Tippens made famous, only this COC protocol aims to block more pathways.
Anyway, today I picked up the meben, it was special order for the pharmacy, lucky my insurance covers most of it. I need now only to source the Metformin and then, we'll start a methodic trial of the protocol.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Plume Quote  Post ReplyReply Direct Link To This Post Posted: Feb 21 2020 at 5:31am
Mariote, all the best with your trial!  And I, too, would be very interested in your feedback.

Metformin is taken by diabetics usually so a very common drug.  It would be difficult for people to get hold of this side of the pond who don't suffer from diabetes.

Very interesting that everyone gets the same drugs in the same doses.  For example, I am a slight woman, only weigh 111 lb; so will I get the same dose as a rather larger woman twice my size!!!

What I do take is high-dose turmeric and I will try and find the journal article which originally made me decide to try it.  It was written by a cancer specialist, about a woman who had exhausted all forms of further treatment and was published in the British Medical Journal, the journal for doctors in the UK.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Plume Quote  Post ReplyReply Direct Link To This Post Posted: Feb 21 2020 at 3:17pm
Hi guys
You have got me thinking about Care Oncology and wondering whether they actually have a physical presence in London and why all consultations are via the phone or online.  Do they not have patients making appointments and seeing someone face to face?
Didn't take long, just a few minutes' googling.  I found their address plus a photo of an impressive looking building in Harley Street, arguably the most well-known and expensive street in London for prestigious medical specialists.
BUT, at the postcode and address provided, there are 7 listed practices, dentists, orthodontists, medical doctors, cosmetic surgery consultants, etc but Care Oncology is not listed among them.
Now that's not to say that they do not exist, just that I could not find them at the address and postcode provided.  AND, I don't say that COC protocol does not work; I don't know.
What I do know is that, as a group, we are suckers for anyone and everyone telling us they have something that would "help".  Some of the many purveyors of cures out there may be genuine but as sure as eggs is eggs, there are even more that see us as cash cows to be milked.
What I say is try it if you feel convinced it would help and you can afford the cost, only just be wary and check everything out carefully. 
I can't wait for Mariote to report back
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