Dr Callebout appointment: Hello Ladies... - SHARE Metastatic ...

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Dr Callebout appointment

Hello Ladies,

I went down to London yesterday to see Dr Callebout. I read about how he had helped Jane McLelland, the author of "How to starve cancer". The reason why I chose him was because if he could help a stage 4 cancer patient reach remission, then I knew I had to see him too. I want to get to that point too.

I had a long list of questions to ask Dr Callebout about whether I should start taking certain supplements or additional off-label drugs, green tea and so on. He said some were a good idea, such as chloroquine, dipyridamole, and propranolol, but that others were not, such as cimetidine and milk thistle.

For example, rather than drinking any old green tea, he mentioned that matcha green tea powder was better. He said Earl Grey tea is good. I don’t normally drink it, but I’m game. He tailored everything he said to my particular diagnosis, so obviously that is going to be different for everyone on here, as we do not all have the exact same diagnosis. Our background and health history is different too. He made a lot of other recommendations too, which he will write back to me about, as I found some of what he was saying very technical and not so easy to understand. I took notes, but I think once I have the letter in my hand with his recommendations, I will find it easier to follow his protocol.

He asked about different functions (bowel movements, vaginal issues, thyroid function etc) and asked for me to get my iodine levels checked. He believes in the COC protocol, and said there is evidence of it in helping double survival times, and he made some dietary recommendations such as reducing glutamine (avoiding asparagus, cutting back on meat, avoiding dairy and keeping the fermented foods).

Oh, and when I mentioned the shingles vaccine (I still haven’t had it!) he said to check it doesn’t contain aluminium in it.

Dr Callebout plans to write to my oncologist, so I shall be interested to hear back from her too.

Sophie

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So helpful Sophie thanks.I think this decided me to try.I got my latest scan results and blood work from oncologist and will send to them today...Do you get to pick which Dr you want from COC ?

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Hi Marie,

I am seeing Dr Mazibuko at the COC. I did not choose him; he was the doctor I was assigned and I am happy with him.

Sophie

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Oups just realised he is not part of COC.Are you seeing him privately? Do you mind sharing how much a consultation cost? Thanks Sophie

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Hi Marie

I’m going next month to London COC..initial consultation is £450

Barb xx

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Ouch! I am a bit annoyed that when I asked them about cost they only mentioned £80 medicine and £200 appointment quarterly cost... I do find find a bit disingenuous but will probably go past that and try anyway... I am not sure Dr Caillebout is part of COC I think he is a different Dr Sophie is seeing but I have asked her to confirm.

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I’m seeing Dr Vamadevam...that’s all I know

That’s really bad that you weren’t told the initial consultation fee..I’m surprised at that

I doubt it matters which doctor you see...I think they’re all using the same protocol

The Jane McLelland book is all about her journey which is so different from our mbc so it’s not totally relavent to us.. I read the book about 3 months ago and found the layout very confusing however people love it and there’s lots of good information within...off label drugs have been used for different conditions other than cancer so I’m hopeful for a treatment plan that will help....anything’s worth a try

Barb xx

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I share your view on the book. I am half through and am struggling a bit but will finish. I will probably for for COC but wonder whether I should wait until they change my treatment next month ( I am pretty sure next PET will show further progression and they will have to move me from Ibrance to plan B whatever that is... What I struggle with on complementary therapy and diet advice is the amount of conflicting advice out there... It is mindnumbing really!

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Yes I ignore most of the stuff out there...a lot of people say something or other cured their cancer when they are on normal meds as well so can’t Possibly prove which treatment has worked...also a lot of people are making money out of selling books and supplements because we are vulnerable with this disease and often will try anything if there’s a chance it will work

I made a comment about the book on her Facebook page...only that I thought the layout was difficult..and I got a load of nasty comments from her..totally uncalled for as I was only expressing my opinion...I’m now banned from her Facebook page!!..I was actually quite upset

I’m having a pet scan tomorrow to see if the liver nodule can be irradiated..if not then I’ll probably have to come off Ibrance

I did explain this to COC but they were still happy for me to go for a consultation...I think because I worked in healthcare it makes me sceptical of most things but I’ll keep an open mind for now...my main worry is that I don’t have years to wait for a cure..that is if there is one

Barb xx

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That sounds exactly how I feel. Getting balance right between maximising chances without falling into throwing money at anything and loosing common sense... I cornered my oncologist yesterday about life expectancy because for me 2/3 years invited a different approach to 4/5... I was totally level headed and unemotional when I spoke to him so I hope he was honest and he said even if we move away from Ibrance 4/5 was an objective assessment... That was all I needed I just wanted more time for them to find new treatments... I know I will never be cured but with 6 and 7 year boys at home any extra year I can get on top will be priceless! Please let me know how you get on with your PET whenever you get your results.

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You were banned?? That is not a good sign the whole point is surely that we are allowed to have an opinion.

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Good luck with your PET! I'll be sending positive vibes and wishes that they can zap that sucker!

Love,

Marianne

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Barb, I'm impressed you were banned. To me, when somebody is that sensitive about what they published, it tells me the science isn't all there, and they are hard pressed to defend it. Isn't that why peer reviewed articles are the norm? I'd wear your banning as a medal of honor!

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My thoughts too

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"banned from her Facebook page!!." I Love It! LMAO

Good on you Barb for being Honest.

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I agree with u. A lot out there but I feel u really have to use common sense. There r no quick fixes to this disease. I would always discuss any treatments with my oncologist first.

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Hi,

Doctor Callebout is an integrative doctor and not part of the COC. Both based in London though. xx

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Thanks Eva this is what I thought. Not sure what to do now...Dilemna!

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Hi,

It is difficult to know what is best... The way I see it is to continue doing what I am doing; Ibrance, diet, etc. as it is working well for now. If I managed to get into remission I will add an integrative doc to try and keep being in remission. However, If markers go up and there is progression then I would add COC.

I am a bit reluctant to add more toxic drugs at the moment and I am trying to keep it under control with a strict plant-based diet and healthy lifestyle.

All the best xx

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Yes I had moved to organic food and skin care originally based on the "anticancer" book but trying to be a bit more savvy now that Ibrance has run its course... Feel I need to step up a bit ...Might got for COC first then...Are you using any specific supplement ( ie tumeric, vitamin C etc...)?

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Yes, I use lots of supplements. I have a herbalist from Haven (breast cancer charity in UK) and she gives me reishi spore oil capsules and PS7 which has 7 different mushrooms in it. She also gives me a herbal tonic to support inmune system with different plants including Ashwagandha. I feel my energy levels are good with it.

I also have turmeric, Omega 3 Fish oils, Floradix, Amla, glucosamine sulphate, etc.

For an integrative approach, I really recommend a book called The Cancer Revolution by Leigh Erin Connealy. She explains step by step what to do without the need to pay for a doctor.

Eva xx

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Fab thanks.will try

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Got it wrong...it’s £400

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Yeah ! An extra £50 to spend on organic green tea and other heathy treat 😂

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Hi Marie,

It cost £290 to see Dr Callebout. He is not part of the COC, but he supports their protocol.

Sophie

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Thanks Sophie. Sorry I kind of hijacked your post! 🤣

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You're welcome, Marie. I'm glad I could help.

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Hi Sophie

Shame my appointment wasn’t on the same day..would have been lovely to meet you

As you say..we’re all different so their advice will vary

It’s annoying about asparagus!!.. now it’s the season here

I’ll let you know how I get on next month...hope he’s right about increasing survival times...I would pay any price for that

Barb xx

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Hi Barb,

Yes, I know! It would have been lovely to meet. Never say never though! Maybe we can still plan to meet at some point.

I am annoyed about asparagus too. Oh well! I am willing to give it up if it will help.

Sophie

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What is the issue with asparagus?

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I was told to avoid it because of the glutamine.

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Sophie sounds like you had a great appointment. It sounded like it was individualized which I think is far better than most which all offer generic protocols to everyone. I know how much you were looking forward to it so I am happy that it was something worth waiting for.

It sounds like he gave you mostly sensible advice which was great to read. However I must say I'm still not sold on the avoiding asparagus business. If as you mention he said to avoid because of the glutamine then that doesn't make sense. Glutamine helps maintain the health of the digestive system. It is a critical factor in cardiac functioning and in keeping the circulatory system in good health. Glutamine also supports proper neurological functioning, and it is associated with improvements in mood, concentration, and memory. Glutamine helps build up and maintain muscle mass, and it can be used as a source of additional energy when blood sugar is low. It is found in so many vegetables and in higher concentrations than asparagus.....spinach, cabbage, parsley, beets and is also very high in beans, peas and lentils. Most of these later mentions are high protein and are a staple in people who have lead a vegan or plant based diet...…which everyone is tooting is the 'best'. Just doesn't make sense to me.

I still believe eating a balanced healthy diet with certain 'treat' things in moderation is far better.

Sandra

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Hi Sandra,

Thanks for the advice.

Sophie

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Hi Sophie,

Thanks for all the info. It seems that Dr Callebout can help. I think I will make an appointment with him after half term.

I will try an integrative doctor before going the COC route.

Many thanks 💕

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Hi Eva,

I was very impressed with Dr Callebout and would highly recommend him.

Sophie

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apologies, I missed it all, who is he ? Is he an oncologist ? Many thanks

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Dr Callebout is an integrative doctor based in London.

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Thanks for sharing, Sophie! Sounds very promising! :)

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You're welcome.

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Thank you Sophie and thank you for sharing. It sounds like it was well wort going. X

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Thank you. Yes, it was. Now I have to have some tests done.

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What is COC? COC protocol?

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It stands for the Care Oncology Clinic. It is based in London, but there are also clinics in America.

Here's a link to the British site:

careoncologyclinic.com/

And here's the American one:

careoncology.com/

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Sophie,

Thank you for the info. It is in fact such an individual situation with each of us. To me the only way to get what each of us needs is to see a doc like Dr.Callebout.

We read books and articles about different protocols that have worked for certain people.

I admire your tenacity in looking at all options.

I can only speak to my onc about this stuff because I don't have the financial resources to pursue private paths.

If she goes with certain protocols it may be covered for me by Medicare.

God, even acupuncture isn't covered!

Glad you had a succ essful visit and he will follow up with you.

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Hi Marianne,

You're welcome. Yes, we have to do what we feel is best for our own personal situation. My oncologist only believes in conventional medicine and treatment options. She didn't object when I had complementary therapy at the hospital or back exercises through my self-referral to see a physiotherapist at another hospital either, but anything else involving integrative doctors, supplements, diet and so on are not things she either approves of or advises me on. So that's why I have gone elsewhere for those things.

I hope you can get coverage for what you need.

Sophie

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Thanks Sophie! I hope so too! It's depressing not being able to afford other options. It actually makes me upset!

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You're welcome, Marianne. I wouldn't give up. I would just keep digging and researching and maybe there is something out there that you can tap into. Do you have any free cancer services in your area? Can the local hospital, clinic or library help you with gathering more information?

Sophie

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I'm going to delve deeper into what may be available to me for sure!

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That sounds like a good idea. I hope you get on well with that.

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Thanks for sharing, Sophie! Must have been so interesting to interact with him! 👍👍

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You're welcome, Linda.

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Let me know what he says Sophie. I have a complete lengthy letter from Dr. Callabout from another patient who shared it. It would be interesting to see if it is the exact same letter that he submits to you.

Best of luck

Mimi

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Thank you, Mimi.

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Well

Ladies, I’m in the states so not clear, on surface, what the equivalent of the supplements are. But why did he suggest no milk thistle or asparagus? And I totally agree with matcha. I buy mine from

Japan and have it shipped. It’s excellent

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Also did he suggest iodine drops? Protecting the thyroid is key so wondering about that level being kept strong

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No, he did not suggest iodine drops.

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why did he say no milk thistle or asparagus

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I can't remember, sorry. I just remember he said no about asparagus because of the glutamine.

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I went to the COC website and was impressed in the negative direction! Their CEO is a former banker with Deutsch (sp?) Bank, which raises red flags for me. I also found some of their statements about results to be phrased in ways which seemed misleading to me. I asked a couple of the bc patient advocates that I know and respect what they knew about COC and one had not heard of it and the other thought it seemed scammy. If anyone in the US wants to go to top tier Cancer Centers, those are the ones designated "Comprehensive Cancer Centers" and they are listed on the website of the National Cancer Institute. There are around 50 of those, scattered around the country, more heavily on the coasts. I have been to the one at University of MIchigan twice, once right after initial staging and then again earlier this month. The oncs I saw there are bc specialists and have been very helpful to me. My own oncs have set these appts up for me. The one group that studies CAM (complimentary and alternative medicine) that I respect and trust is the Annie Appleseed Project. They look at clinical trial data. We're each going to do what seems reasonable to us and I just had to chime in here after exploring the COC website a bit.

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