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Care Oncology Clinic consultation

SophSP
SophSP
84 Replies

Hello Ladies,

I had a consultation today with Dr Mazibuko from the Care Oncology Clinic in London this afternoon. Some ladies on here wanted me to post my thoughts on how it all went, so here goes!

Dr Mazibuko went over the 4-drug COC protocol, which includes the following:

Metformin

Atorvastatin

Mebendazole

Doxycycline

And possibly a fifth drug, Flavin.

For the doctors and nurses on here, you will see that these drugs are commonly used for the treatment of diabetes, high cholesterol, parasites and the fourth is an antibiotic (but not to be taken long term). The Care Oncology Clinic has repurposed these well known drugs for the treatment of cancer. They have been up and running for four and a half years. I don't know how long the American Care Oncology Clinic has been open.

Dr Mazibuko mentioned that he can write to my GP and oncologist to let them know about my plans to take these drugs. They are intended as adjunct treatment, not stand alone, so I shall be continuing with Letrozole, Zoladex, Zometa and the supplements I am taking. He said that these drug combinations are normally well tolerated, but some of the side effects are muscle aches from the statin and nausea from the metformin for the first few days.

Some of the patients who are on the COC protocol are GPs and oncologists, which doesn't surprise me, because I have come across some of them on the Facebook pages.

This post isn't intended to persuade anyone on here to use the COC protocol. I have done my research, and suggest others do the same if they are interested in starting anything new.

In addition to the COC protocol, I shall also be seeing Dr Callebout, an integrative doctor based in London, at the end of May to see what else I can do to improve the efficacy of my treatments. I intend to ask him about intravenous vitamin C infusions, amongst other things.

Sophie

84 Replies
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Barbteeth

Hi Sophie

Thanks for posting

Barb xx

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SophSP
SophSP
in reply to Barbteeth

Hi Barb,

You're welcome.

Sophie x

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Barbteeth
Barbteeth
in reply to SophSP

Morning Sophie

I’ve e-mailed the COC in London but so far had no reply ..did it take long for them to reply or did you just ring up for an appointment?

I thought they might send me an information pack or something

Sorry just picking your brains...I’m still uncertain what to do!!!

Barb xx

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SophSP
SophSP
in reply to Barbteeth

Hi Barb,

It took nearly a week to hear back from the Care Oncology Clinic after I had emailed them. Have you been waiting long for a response? If so, I would give them a ring to chase them up. They were quite busy when I contacted them. I only received an information pack after my consultation and when I agreed to go ahead with the protocol.

Sophie x

Reply
Barbteeth
Barbteeth
in reply to SophSP

Thanks for that

Not been waiting long..I’m just impatient!!

Will ring if I don’t hear by next week though it’s bank holiday so will allow for a delay

By the way.,had a sore tummy a few days ago.,.have a UTI so wondering if that’s why my markers have risen..hope it is

All the best

Barb xx

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SophSP
SophSP
in reply to Barbteeth

Hi Barb,

I'm the same way. I like to know what's going on. I have been waiting for my oncologist's secretary to ring me back since early this afternoon, but still nothing. My oncologist has not ordered a CT scan for May and I wanted to know why, as I have had them every three months since this all started! She said I would hear back today, but I am not so sure now.

I hope the UTI is clearing up. I have heard they can be quite painful.

Sophie x

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Barbteeth
Barbteeth
in reply to SophSP

Hi Sophie

It’s annoying waiting for people to get back to you...I would also want to know why a scan hasn’t been scheduled if it was me.....this stuff is just in a days work for these people but so important to us and I sometimes think they forget this

Pester them again!!!

My GP receptionist was trying to fob me off this morning when I rang at 8.00 a.m about my UTI.,,so I had to say it was an emergency...which it is to me with my low white cell count...the last thing I need is to be hospitalised with an infected kidney..assertiveness needed!!

Anyway I have the antibiotics so they should stop it In its tracks

Barb XX

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SophSP
SophSP
in reply to Barbteeth

Hi Barb,

Yes, it is annoying! The secretary said she would call me back today with an answer, but she didn't! I tried calling her again at around 5:30pm, but I got the answerphone, so she had probably left work by then. I was pretty assertive earlier, but I could tell as she was going over my records that she took note of the fact that I have been on the phone a lot lately. So I'm probably labelled as a troublemaker who always has a question or something to say about my care.

I'm glad you managed to get some antibiotics. You don't want to be hospitalised.

Sophie x

P.S. I sent you a private message earlier.

1 like
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SophSP
SophSP
in reply to Barbteeth

Hi Barb,

I got an update from my oncologist's secretary today. I called back to find out what was going on, and she said I would get a call back in the afternoon. But when she called me back it was to tell me what I already know, that my oncologist has not ordered a CT scan for the beginning of May! She said that my oncologist is off work until next Wednesday, so I have to wait until then to hear back. Talk about frustrating!

Sophie x

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Barbteeth
Barbteeth
in reply to SophSP

Oh dear that’s totally unacceptable..the secretary where my oncologist works always gets back to me the same day

No wonder you’re cross

As there’s nothing you can do till after the break...try and have a happy Easter..have some chocolate!!.. I’m going to!!

Barb xx

Reply
SophSP
SophSP
in reply to Barbteeth

I was meant to have an answer yesterday! The secretary said I would get a phone call back after my oncologist had been consulted, but she hadn't been! So when I called back today I mentioned I was meant to hear back yesterday. There's not much I can do for now. I did email my oncologist though to let her know I had started the COC protocol today (I finally realised I have had her email all along. I will take advantage of that now). It was a very long email, but I poured out my heart and told her how I am doing all I can to help myself and how my family needs me.

I am working as normal tomorrow, over the weekend and on Monday too. But I am still going to Peterborough on Saturday for the festival of antiques, so I am looking forward to that. Then on Monday I am off to a car boot sale in my brother's village.

Sophie x

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Barbteeth
Barbteeth
in reply to SophSP

Oh Sophie I’m so glad you sent that e-mail..you’ll feel better for having done that!

Barb xx

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SophSP
SophSP
in reply to Barbteeth

Thanks, Barb. I do feel better. I didn't mention the CT scan mix-up in the email though. I feel like I have said enough about that for now. I just feel like I have had so many trying situations to deal with lately! One of my clients bought me a bottle of Prosecco recently, which I enjoyed! I haven't had a drink in months, so it was good to drink that over a few nights. I don't treat myself very often. Then tonight we had a takeaway pizza and I don't feel the slightest bit of guilt! I enjoyed every bite!

Sophie ❤

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Barbteeth
Barbteeth
in reply to SophSP

Yay treat yourself...pizza and Prosecco...my favourites as well

Also curry and Indian beer!!

I’ll ring the COC next week if I’ve not. heard from them

Barb xx

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SophSP
SophSP
in reply to Barbteeth

Thanks, Barb! It's funny how I actually enjoyed my treat, rather than sitting there thinking: "I wonder if this will aggravate the disease?" You should have read one of the letters my oncologist wrote to my GP last November. She said in part: "I have explained to her that it is good to have a healthy diet but the occasional piece of chocolate or Chinese takeaway if she wants to have it should do no harm." I couldn't help laughing when I read that!

I hope you hear back from the COC next week. I would wait until Tuesday though, as they are probably going to be closed over Easter. I started taking the off-label drugs yesterday and everything is going well so far. We'll see what my next blood test results show.

Sophie x

1 like
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girlsptz
girlsptz
in reply to SophSP

My gosh Sophie that's maddening for sure. I get my next bone and CT scan notifications in the mail about a week after I have my last one. Hopefully they can get quick appointments for you as May isn't that far away. My next isn't until the 3rd week in June. Good luck my friend. Try not to let it ruin your weekend.

Sandra

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SophSP
SophSP
in reply to girlsptz

Yes, it certainly is, Sandra! When I spoke to her today she said how my oncologist and I had discussed my suggestion about having another PET CT scan and how she had refused that. I knew that already, but what I needed to know was why she had not ordered a routine CT scan. The CT scanning department had told me yesterday that without a referral from my oncologist they couldn't book me in, which is understandable. I won't let it ruin my weekend. I am still working, but I have lots of fun plans too! I hope you have a good weekend too!

Sophie ❤

1 like
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girlsptz
girlsptz
in reply to SophSP

Hi Sophie. Were you able to get information on when your next CT is booked? I was just thinking of you. Hopefully all settled. Take care.

Sandra

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SophSP
SophSP
in reply to girlsptz

Hi Sandra,

I won't find out anything until at least tomorrow, as my oncologist's secretary told me my oncologist is on holiday until Wednesday. So if I haven't heard back by tomorrow lunchtime I will call again. I hope I don't get fobbed off again with "We still need to check with the doctor". They had not even passed on my message last week when I was told I would hear back the same day! This is getting ridiculous.

Sophie

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SophSP
SophSP
in reply to girlsptz

Hi Sandra,

I have finally sorted things about with my CT scan. I called my oncologist's secretary back. She sounded surprised to hear from me. I don't know why, as I was expecting a phone call today to let me know what was going on, but I didn't get anything. She said a note had been put on my record about my referral, but there was still no appointment date or time. She then put me through to the CT scanning department and as I had a referral through they were actually able to schedule an appointment for me over the phone at my convenience (for a change!) I didn't even get an apology from the secretary for being given the run around and having to chase the CT scan. But at least it's done. I'm having the CT scan after work next Thursday.

Sophie

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girlsptz
girlsptz
in reply to SophSP

Thanks for the update Sophie. Certainly seems like a very unorganized office but at least you are set with your scan date. I'll be thinking of you on May 2nd.

Sandra

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SophSP
SophSP
in reply to girlsptz

Thank you, Sandra. If people would just do their jobs properly I would not have to chase them! I find that so irritating. I have a life outside of being a cancer patient. I don't like to be at their beck and call all the time waiting for phone calls and appointment letters.

Sophie x

1 like
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girlsptz
girlsptz
in reply to Barbteeth

Infection/inflammation will definitely cause markers to rise. Hope the antibiotics work quickly. Take care.

Sandra

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Barbteeth
Barbteeth
in reply to girlsptz

Thanks

I think this hormone treatment can make them more frequent and riding horses ( without going into detail!’) can irritate

Barb xc

1 like
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Kodadog
Kodadog
in reply to Barbteeth

If you go to their website - you will find a tab that asks you to sign up for their brochure.

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Marthasvineyard

Thanks for sharing. I find this interesting as adjuvant treatment. What does integrative entail I will

Be curious to hear.

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SophSP

Hi Martha,

You're welcome. We have to do our research and choose what we feel is right for us as individuals.

Sophie x

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girlsptz

Thanks for posting Sophie. Interesting how all of these drugs work on affecting the absorption of glucose. I will be eager to see how you get on with the regime. Good luck.

Sandra

1 like
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SophSP
SophSP
in reply to girlsptz

Hi Sandra,

Thanks for your message. We shall see what happens!

Sophie x

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girlsptz
girlsptz
in reply to SophSP

Sophie my mind seems to be always working.....do you have to purchase these out of pocket or are they covered? This is just for my curiosity only as I'm sure it doesn't matter to you in your journey.

Sandra

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SophSP
SophSP
in reply to girlsptz

Hi Sandra,

The Care Oncology Clinic is run privately and is separate from the NHS, so it means having to pay for treatment. I don't care about that though. I have been open to the possibility of going private if I didn't get everything I wanted from the NHS. It's the first time I have paid to see a doctor, but I feel that it is worth it.

Sophie ❤

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Barbteeth
Barbteeth
in reply to SophSP

I think most of us would give up everything we own in order to be cured...I know I would

Barb XX

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SophSP
SophSP
in reply to Barbteeth

Hi Barb,

Oh, I know what you mean! If I didn't have the money then I would take out a loan or ask my dad for help, but I wouldn't give up! This disease doesn't deserve to take so much away from us. I read Sophie Sabbage's book last year and while I agreed with some of the things she said, one thing I could not get my head round was when she said she "made friends" with her cancer. I don't see this disease as a friend, but as an enemy.

Don't forget that there are many options available to us. Just because we have metastatic breast cancer does not mean to say we are a lost cause. That is not the case! So that's why I am looking at lots of other options. We need to weigh up our options and make choices that we feel comfortable with after seeking medical advice. I have not jumped into anything new without asking for help and guidance from the professionals because I am not a doctor and do not have all the answers. This is a work in progress, and making progress is my goal!

Sophie x

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girlsptz
girlsptz
in reply to SophSP

I haven't read that book Sophie but I can tell you this cancer is no friend of mine either....what a weird way to think in my opinion …. I'm waiting for the cure so I can send it packing very far away.

Sandra

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SophSP
SophSP
in reply to girlsptz

Hi Sandra,

The book is called The Cancer Whisperer. Yes, I found it an odd way to look at this disease too. How can something that has caused so much pain, anguish and devastation be referred to as a "friend" to cherish? I don't view my mum's cancer that took her life as a friend, and never will, and that's how I view my disease too. It's an enemy that deserves to be beaten before it is too late. I'm sure the cure is coming soon. What a relief it will be when it comes!

Sophie

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Evaf

Thanks for the update Sophie. Xx

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LeeannW710

Thank you for sharing! Xoxo

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SophSP
SophSP
in reply to LeeannW710

You're welcome, LeeAnn!

Sophie ❤

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PLASEM

Thanks for sharing take care and God bless you

Reply
SophSP
SophSP
in reply to PLASEM

Thank you! All the best to you too!

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LouisaMay

Hi Sophie, I am very interested to read about your COC protocol as it is something I am just starting to look at myself. Do you know what positive results they have had up to now with stage 4 mbc? I will be sending off for Jane McClelland's book very soon and look forward to informing myself more fully from that. May I ask what sort of money it costs to do it via the London clinic? I understand that the meds themselves are relatively low cost. It is very telling that some of the people using it are oncologists! I hope it all works out very well for you and look forward to hearing about it on this forum - go girl! xxx

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SophSP
SophSP
in reply to LouisaMay

Hi Louisa May,

Thanks for your message and for the encouragement! This is new territory for me. I just had the consultation yesterday. I have not yet started the COC protocol. I am waiting to receive my consent form and then once I complete that and send it back they can send out my prescription and I can get started. I also mentioned to Dr Mazibuko that I would want him to inform my GP and oncologist of my plans. I don't want to keep this from them, but want to be transparent and open about everything.

The initial consultation costs £400 and it's £70 for a three-month prescription. Follow-up appointments are £200 and they are recommended every three months to check how patients are getting on. What I found interesting is that Dr Mazibuko worked in the NHS and now he is in private practice. I watched a webinar recently and learned a bit more about the background of the clinic and how things work. You can go their web site to learn more.

Sophie x

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Barbteeth
Barbteeth
in reply to SophSP

Hi Sophie

What will you do if your oncologist doesn’t agree with this regime ?

Just wondered..you don’t have to answer if you don’t want to

Barb xx

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SophSP
SophSP
in reply to Barbteeth

Hi Barb,

I am not expecting my oncologist to be on board. When I saw her in February I did discuss the possibility of trying different things and she looked alarmed. I told her I was not going to stop conventional treatment, but that I would stick with it, so I think that reassured her. I agree with conventional treatment; I just know it isn't enough used on its own for those of us with metastatic breast cancer as whatever we are on will stop working at some point before we have to try something new. So I will talk to her about it again when I see her in May and see what she says. She will probably say that she does not agree with it, but that as long as I carry on with my current treatment she will probably be OK with that.

Sophie x

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Barbteeth
Barbteeth
in reply to SophSP

Ah ok

When I asked mine (after reading that book of jane mclelland)...i mentioned those drugs and she said if they were that good we would be taking them now

Nobody seems to give us a straight answer either way...the conventional are sceptical of the alternative practitioners because there’s no solid evidence of success and the alternatives critiscise the conventional

If you look on cancer research website they maintain that there’s no evidence of glucose playing a part in cancer progression

I give in!!!

Barb xx

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SophSP
SophSP
in reply to Barbteeth

Hi Barb,

It's funny you should say that, because when I discussed taking off label drugs when I saw my GP last month she said the same thing as your oncologist that if they were that effective we would all be taking them right now! It sounds like they think alike in that respect! I suppose they have to abide by strict NHS guidelines and not do anything controversial.

I don't like the backbiting that seems to take place between conventional and alternative practitioners either. I believe they can both be effective if used together and we have done our research to ensure they can work together and do not cancel each other out.

Sophie

P.S. Don't give up! I don't intend to!

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girlsptz
girlsptz
in reply to SophSP

Hi Sophie....I think the key here is yes you have done your research and go in with a clear mind and will continue with conventional as well which I personally think is necessary. My concern is when I see people who take an article off the web with no real scientifically proven evidence but they make it seem like a cure and people abandon the conventional and use whatever the flavor of the month is.....that is dangerous. If they do it knowing the possible consequences then that is one thing but most don't.....it's why people get scammed by telephone or at the door people who aren't legit. Using adjuvant therapies alone in the hope that it will augment can be rewarding and as long as you have researched that none of the drugs interfere with what you are already taking then it's ok. My oncologist was involved in research on using Metformin so I already know her views on that. I think you are doing the right thing for you and I can't wait to see how you get on. Sorry I always seem to have an opinion whether you want it or not....it's just my nature.

Sandra

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SophSP
SophSP
in reply to girlsptz

Hi Sandra,

I appreciate hearing your views, so please don't apologise! I respect your medical insight and background, so I am glad you share your knowledge and views on here. I do not want to abandon conventional treatment. It is working, so why would I throw it all away and stop? I want to improve the efficacy of conventional treatment and hopefully continue to remain stable.

I wish you all the best!

Sophie x

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Barbteeth
Barbteeth
in reply to SophSP

Hi Sophie

My oncologist doesn’t have to adhere to any NHS rules as I see her privately..have BUPA insurance..she didn’t object to me taking curcumin..glucosamine and chondroitin..aspirin..Vit C..magnesium but she said that metformin and statins had side effects and taking doxycycline was not for long term use...so there you have it..her opinion and they all have their own!

I’m always wary of people with books to sell about their views...I steer well away from those...maybe they have good intentions who knows

Barb xx

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SophSP
SophSP
in reply to Barbteeth

Hi Barb,

Oh yes, of course! I forgot you are a private patient. I was also told that doxycycline is not intended for long term use. Dr Mazibuko told me that yesterday. But when you think about it, these treatments have been used for years by patients who need them and they are often well tolerated. I don't think the side effects will be as bad as chemotherapy and yet look at how keen oncologists are to dish that out to cancer patients. I've never had chemotherapy myself, but I remember how harsh it was when my mum had it. Her immune system was completely destroyed.

I know what you mean about people who write cancer books. While I am reading the books, I ask myself what is in it for them. Are they a cancer patient? Have they lost a loved one to cancer? If they have no actual personal connection to cancer, then I am more sceptical and wonder what is driving them. So with people like Kris Carr, Jane Mclelland and others, I feel like I can relate to them more, as they have been in our shoes. Kris has lived with metastatic cancer for 16 years and Jane does not claim to have "beaten" cancer, but to have kept it under control and it seems like she is doing her best to keep it that way.

Sophie

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Barbteeth
Barbteeth
in reply to SophSP

Good luck Sophie with whatever you decide

You’re a plucky girl

Barb xx

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Barbteeth
Barbteeth
in reply to SophSP

Hi Sophie

After all my cynicism yesterday...

I’m pondering whether to just have a consultation at the COC clinic..would do no harm..except to my pocket!!..and I could combine it with a visit to see my daughter Miranda...one part of me says unproven theories but then the other little voice says what if it works?

My main concern is that their drugs could interfere with what I take..particularly the Ibrance....and if successful to which drug do you attribute the success to?... I’m rambling this morning...I hate being so indecisive

I’m in a funny (not haha funny) mood...I think you’ve got me thinking!!!

Barb XX

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SophSP
SophSP
in reply to Barbteeth

Hi Barb,

It is right to question things. I do too! One of my main concerns was interactions with my current treatment too, so I brought it up and was told it does not interact. I would say that if the treatment does prove successful I would stick with it. I wouldn't really care whether it was the conventional treatment or the off label that was working, as long as it works! I didn't mean to spark a debate about my decision. After all, we must all make our own decisions about which treatments we are willing to accept or reject.

Sophie x

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Barbteeth
Barbteeth
in reply to SophSP

I think it’s great to start a debate especially as a lot of ladies here may be unaware of other treatments out there...it’s not as if you’re recommending anything..we all make our own decisions

As you say..if it works then that’s what matters

Good luck

Barb xx

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Evaf
Evaf
in reply to Barbteeth

Hi Barb,

Sorry for hijaking this thread. You mention above about taking chondroitin. I was also taking it but at the Jane McLelland's Facebook group they were discussing recently that choindritin could be bad for metastasis and that it needs to be glucosamine sulphate. I am not a doctor so I do not know for sure but I have changed it just in case!

Take care 💕

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Barbteeth
Barbteeth
in reply to Evaf

Hi Eva

This is the problem with supplements..my oncologist said it was ok to take glucoseamine with chondroitin..yet McLelland says not...I think I’ll stick to what my oncologist says as she’s the professional and sometimes recommendations in such books or fb pages are general and not specific for mbc

I’ve been removed from that fb page by the way!!

Barb xx

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Evaf
Evaf
in reply to Barbteeth

Hi Barb,

Yes, there is so much info out there and it gets overwhelming sometimes!

Have you been removed Jane McLelland's page?!

Take care,

Eva

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Barbteeth
Barbteeth
in reply to Evaf

I have!!!

Barb xx

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girlsptz
girlsptz
in reply to Barbteeth

Glucosamine sulfate is the most natural and absorbable form of glucosamine so definitely the one to choose. There is absolutely no evidence to support that chondroitin or msm is bad for metastasis. Just be careful the one you choose doesn't contain soy as many of them do and of course you can't be allergic to shellfish. I'm probably the only person on earth that has never been part of Facebook but if I was and read all those type of fear mongering nonsense posts I would be removed anyway because I couldn't help myself but dispute them.

Sandra

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Barbteeth
Barbteeth
in reply to girlsptz

Haha that’s me

Barb xx

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SophSP
SophSP
in reply to Evaf

Hi Eva,

I was thinking of taking glucosamine sulphate too. Where did you get yours from? Is it readily available in Lloyds or Boots? Just once, I would like to be able to buy a supplement from a local pharmacy rather than search for it online!

Sophie x

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Evaf
Evaf
in reply to SophSP

Hi,

I get mine online from Nature's Best. My herbalist from Haven recommended that brand.

Eva xx

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SophSP
SophSP
in reply to Evaf

Hi Eva,

Thanks for the recommendation!

Sophie

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Teddielottie

Good luck Sophie ! You are very brave ! Take care and please let us know your thoughts . X

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SophSP
SophSP
in reply to Teddielottie

Thank you! I am hoping for the best!

Sophie x

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mariootsi

Sophie, Thank you for the info!

This would all be out of pocket, right?

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SophSP
SophSP
in reply to mariootsi

Hi Marianne,

You're welcome.

Yes, this is out of pocket. The Care Oncology Clinic is a private clinic, so they charge for their services. I think it is worth it. The medication they prescribe is not intended to replace the conventional treatment I am on, but will work alongside it.

Sophie x

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Mimigram

Hi Sophie, I just read your update on your interview with COC. The drugs you mentioned are the drugs they are running a trial on until 2023. Those four drugs block several of the pathways. Did you send paperwork in before you scheduled your video appointment.

Mimi

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SophSP
SophSP
in reply to Mimigram

Hi Mimi,

That's interesting! What trial is this? Could you send a link? Dr Mazibuko went over the different pathways that these drugs block. Some block multiple pathways. Then I am going to see Dr Callebout in May to see what other pathways I need to block and what else I can do so that I can stamp this disease into the ground.

Before I set up my appointment I was required to send in my most recent pathology and radiology reports, along with a letter from my oncologist which outlined my diagnosis. Fortunately, I have kept records (You should see it all! I think I need a suitcase to store all the letters and reports!) What's nice is that I had the option of an in-person appointment in London or a video consultation. My husband and I opted for the video consultation so that we wouldn't have to trek down to London.

Sophie x

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Mimigram
Mimigram
in reply to SophSP
Reply
SophSP
SophSP
in reply to Mimigram

Thanks for the link, Mimi. I will have to print this out and show it to my GP when I see her on Tuesday for my next Zoladex injection.

Sophie x

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Mimigram
Mimigram
in reply to SophSP

Good idea!

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SophSP
SophSP
in reply to Mimigram

My GP is going to love me on Tuesday when I go armed with all this information, Mimi! I have been compiling a list of things I need to print out.

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Mimigram
Mimigram
in reply to SophSP
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Toomanyquestions

Is this curative? X

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SophSP

I can't answer that yet. Sorry.

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Toomanyquestions

Did the doctor say he’s had success with the protocol?

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SophSP

Ellie, I would suggest you contact the Care Oncology Clinic if you are interested in their protocol. I can't speak for others and don't want to sway people either way because we all have to make our own decisions. But yes, I do think it can work. I'm willing to give it a go.

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MyMiracle13

Sorry it’s taken me this long to post a reply which is actually a question. You mentioned that the antibiotic shouldn’t be taken for a long time. How long did the Dr. tell you to take it? I am going to have a consultation with my oncologist soon and I will bring this up with him. I am in a bit of a strange situation because I live in the Philippines where Ibrance is not yet available so my oncologist here does not have much information or experience regarding Ibrance. I get my supply from Malaysia so I also see an oncologist there who issues my prescription and who is more knowledgeable about Ibrance. I mention this because he was educated in the UK and his credentials are all from UK so maybe he is familiar with the Care Oncology Clinic in London and what they do. Many thanks for this information Sophie. It is most helpful.

Maria

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SophSP
SophSP
in reply to MyMiracle13

Hi Maria,

I started the Care Oncology Clinic protocol on Thursday with one metformin, atorvastatin and medendazole to be taken each day. After a month, I will stop the mebendazole and alternate with doxycycline. After two weeks, I will increase the metformin to two each day as well as the atorvastatin. I hope that answers your question.

I do not take Ibrance either and I am in the UK. I don't know why my oncologist did not give me that option when I first started treatment. I shall have to ask her when I see her in May. I keep forgetting to when I see her!

Sophie

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MyMiracle13
MyMiracle13
in reply to SophSP

Hello Sophie. Are you on any other treatment? I am on Ibrance/Faslodex now which I get from Malaysia since it is not available in the Philippines but I am very interested in the COC protocol as I have read about it. I am going to ask my Malaysian oncologist about it. Many thanks for your reply. Please continue to share how it works for you.

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SophSP
SophSP
in reply to MyMiracle13

Hi Maria,

Yes, I am. I am on Letrozole, Zoladex and Zometa, as well as various supplements. I plan to add more once I have seen an integrative doctor in London next month. I've been on the COC protocol since last Thursday and everything is going well so far. I have not suffered from any side effects yet, and hope it stays that way! I wish you well.

Sophie

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Mimigram

Hi Sophie, Please let me know how your meeting with Dr Callabout goes. On Jane’s book study Facebook site a lot of women post things that he tells them to do. It seems overwhelming with supplements etc. did you see the list that one gal posted?

Mimi

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SophSP
SophSP
in reply to Mimigram

Hi Mimi,

Do you plan to see Dr Callebout too? I'm seeing him at the end of May. I imagine the protocol he suggests will be tailored to my own personal situation, unlike the COC protocol. My goal is to block all pathways, which is why I am not just relying on standard care or the COC protocol, but everything together. So with all three, I am hoping I go into remission. I've seen some people mention Dr Callebout on Jane's page, but I don't think I have seen the post you mentioned.

Sophie x

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