As others did before me I had promised to put an update on my first COC appointment last month... Having just posted a War & Peace blog on something else I will keep this one brief... So was I impressed by the person I saw ? The answer is quite categorically "no"... However does it affect my decision to follow the protocol and do I know what it would have taken for them to impress me ? The answer is also no. I had read about the protocol, I had ( painfully ) cleared it with my medical team , I knew of its limitation and I knew that I would never be certain , should they be a positive response, which one of COC/ conventional treatment or combination or both was responsible... So ,with this in mind, there was very little the COC guy could add... He painfully regurgitated a well learned script for an hour and I played along... He talked about him ( a lot) and did some hard sale for his previous employer ( a clinical trial clinic in Harley Street) - I even jokingky asked him what was his " finder's fee" rate! He made the appointment last the expected hour ( to justify the fee) and was friendly enough. However I did not walk away with anything new apart from the Holy Grail prescription ( and a lighter bank balance!)... I will not come to him for advice but I am grateful the service they offer give us access to those drugs. So in essence I see him as my dealer 🤣... And I am fine with that , all I want from him is to give me access to my little hope on the side .And ,as he is doing that, all is well. As I have said before my expectations for CoC protocol are the same as the one I have for my National Lottery Direct Debit ... In all likelihood it is an investment that will not pay off but ,if it does, the consequences will be life changing...Being in it to win it is enough of a drive for me to justify possibly wasting money ... Having reassured myself ( via my medical team) that I have nothing to loose in trying ( well in relation to conventional treatment ) , I am happy to take a small financial hit in exchange of that illusive win ...
COC follow up: As others did before me... - SHARE Metastatic ...
COC follow up
Now we know that COC prescribes the same meds - Metformin, Atorvastatin, Mebendazole and Doxycycline. But are the dosages the same as well? It would be interesting to find out from Sophie and Barb and others using the COC protocol if their prescribed dosages are the same. I am open to trying the COC protocol but will start with Fenbendazole for now as that doesn’t require a consult. My oncologist (as expected) brushed off my suggestion that I try the Fenbendazole or the Mebendazole but it’s my life so I will try this. Hope Fenbendazole works so I can go back to him and see what his reaction is.
Yup everyone is on the same meds and from my experience the Doc adds nothing to the process but in the UK this is our only way to access the drugs... There is no evidence it works but I have received reassurance it doesn't arm so right now it works for me...
Hi there
I’ve been prescribed exactly the same drugs and dosage as Sophie...just started again from the beginning as I stopped for a while after my radiotherapy as felt rubbish..I’m not starting in the statin yet...waiting to see how I tolerate the others first
So at the moment I’m taking the Metformin single tablet and a vermox wormer next month I’ll be taking doxycycline with Metformin but stopping the vermox
Might then add the statin
Barb xx
I'd love to hear what the team at the Marsden had to say about COC, as I think they're my team too, and since they put me on 3 monthly appointments and the registrar didn't answer my email about something else, I didn't clear my taking the protocol with them. Had a CT on Wednesday and returning for results next week. I read your other post about your last appointment there and all I can say is I'm the same. My mum wanted to come with me and I had to refuse, trying to explain to her that I'm trying to keep emotion out of it, keep it cool and factual and under control, and then maybe leave feeling satisfied and supported, not something I've achieved yet! All the self-congratulatory 'we are excellent' posters that surround you as you enter your second hour in the waiting room often just add insult to injury! One of the reasons I signed up for COC is to feel a bit more control. It does, and that in itself is not to be underestimated. X
We are I think the only 2 RMH warriors on here ! Kudos to us... Yes I smiled when I saw the " excellent rating" care commission posters too... I was seen the week they were inspected and wondered what was happening, it was like the twilight zone/ parallel universe : I was seen early by the consultant, the nurse doing my infusion asked me about my kids ( so obviously read my notes as I had never seen her before), the meds were ready within 30mn... And so on! Comforted me in the idea that they know what good looks like , they just don't have ressources to deliver it on a daily basis!
Anyway on COC clearance ,my journey was as followed.
1. Raised it with registrar no 1 ( referred as such not because he is the best but because I need to differentiate him from the next one I will mention later 😉) in May who told me to check with " medicine team" ( to be fair I thought he was making them up to fob me off but after a handful of painful calls to the switchboard I managed to track the illusive team down)
2. I spoke to a lovely pharmacist who gave me their email address and answered really quickly ( will message you their email address and helpful response), they signed off everything but for tumeric ( I had thrown that in because I had seen it mentioned on this forum and was keen to get everything signed off).
3. Mentioned it in passing to 1st year oncologist covering my June appointment ( she admitted she could not see the harm but was too junior to sign it off).
4. Cleared with another ( new) registrar in July. She told me she would need to clear with the pharmacy team... I told her I had, to which she answered in a sweetly patronising tone " you have probably asked the Boots pharmacy at the hospital, but that is not enough ,I need to ask our own pharmacist team " ...That was my queue to wave , in true Blue Peter style, the one I had prepared earlier ( ie: the May email mentioned above) ... She said if medicine team was happy so was she.
5. Reinforced the messaging with consultant last week, confirming I went ahead with COC , that I was managing my own expectations ( and recycled that useful national lottery direct debit analogy) but that I needed a bit more at the moment to make up for my " loss of chance " episode ( see my other blog) and that was fitting the bill for now... As with everything else I told her that day she nodded ... She only picked up when I said I was happy that the financial investment was unlikely to pay off by asking what was the " financial cost" . I answered and that was the COC chapter closed...
When do you attend clinic? Would be nice to catch up for a coffee... 3 monthly catch up sounds like a good outcome , they are obviously confident you are making good progress and your stable is here to stay ! 👍
I was thinking same thing re coffee - I'm in next week and then, assuming CT doesn't show up horrors, I guess it'll be another 3 months. Sound possible? I'd feel more confident about my stable status if tumour markers hadn't risen last time I was there. Got paperwork to take to COC and no mention made of the markers so have been stewing about them on and off for the whole summer!
Thanks for all that info, it's relieved one cause of anxiety about next Wed (getting ticked off and told to stop COC). Gill x
Just messaged you to ask for your email address so I can send you the pharmacy response... Let me know once you have your appointment date , I am now due on 28th Aug/ 25th Sep/ 23rd Oct / 20th Nov... On Marker I have stopped worrying as they pay no attention to it ( my July letter still has the May one as pending and no further one since! 🙄)
Good luck for next week... Who is your consultant? ( I was under Dr Somaiah but now see Dr Noble , well very episodically!)
Totally get you. I have a scientific background too and have been mindful to stay firmly on the directed medical path... I have never manage to go past page 87 of the Jane McLelland book and have no appetite to throw myself at anything else of the kind...I understand how some people might want to devote their remaining years at extending their life expectancy and I totally respect that but it is not me. I want to make the most of the best few years and leave as normal as possible ( still working full time with 2 kids at primary school and one at uni). However , having said that , I also feel that being in the NHS system I do not have access to what others in the private system might have. There is nothing I can do about it, well there is but it would mean wasting the savings my husband will need as a single dad of 3 on merely life prolonging treatment... So COC seemed like an acceptable compromise ( and turned out quite therapeutic for my husband too who feels we are going above and beyond ) . For me COC is the drug cocktail not the oncologist wannabe I saw ( and will have to see sadly every 3 months) and if I had the option to have it prescribed by my Dr I would have gone for it but sadly in UK it is not an option... So the 3 monthly catch up ( the next one will be Skype so I waste less time) is a mean to an end: the only Dr I am happy to discuss my condition with and get advice from is my medical team....And to conclude thanks Sophie for being a wonderful contributor to this forum... You always, like so many others offer a balanced and insightful view on things...
Hi Marieleb!
Keep us up dated on the COC results. This is not available here in the US. So we are watching u guys...however there are ways around all but the Doxycycline which is Rx only.
Best wishes for great results! 😀💕
Coc is available in the U.S. via video. Google and you will find a U.S. phone number.
Thanks I’ll have to look it up...😀💕
COC is available in the US
Care oncology is here in US as well. I live in NY and have been in it for 3 months.
Can you share how you are doing in the COC protocol?
Excellent!! Just had another set of scans in December. Chest lymph nodes are "resolved" lesion in rib is shrinking as well as some lung mets. Everything is stable with no progression. Of course this could change at any time but I feel confident that what I am taking is complimenting my Ibrance and letrozole combo. I will have next scans in April. If you are on FB there is a great group called Jane Mcclelland off label use drugs you can ask to join. While it may not be for everyone it's very insightful and useful.
Speaking of the ways around ... I too have to keep the $$$ tight coz if I depart then hubby has to make it without my little monthly annuity so, with that said ... I already take metformin ... my doctor wants to prescribe a statin ... my question is, do you girls think it HAS to be atorevastatin or will any old statin do? Does it have to be doxycycline or will ampicillin do the same thing? I know you all are not chemists, but just throwing it out there, because I can get the fenbendazole and ampicillin, not sure doc would prescribe the doxycicline ... oh and in your heart of hearts, do you think it would do any good to take maybe 3 of the 4 drugs in the protocol if you can't get them all? thanks for putting up with me; I read much more than I post but that is just me ... Thanks for all your informative posts, Marieleb! God bless you and Heavenly Father please heal us all in Jesus name, amen! xoxo
Ok so assuming the protocol is the same for everyone I take 3 medicines at any given time ( well on top of conventional treatment , for me that is Everolimus/ Exemastane/Zoladex and Zometa):
1.Bolamyn SR tablets prolonged release ( metformin hydrochloride ) 500mg : 1 per day for first 2 weeks then 2 per day
2. Vermox 100mg : 1 daily
3. Atorvastatin 40mg : 1 daily for first 2 weeks then 2 daily. Taken every other month.
4. Doxycycline 100mg . 1 daily .Alternate monthly with Atorvastatin...
I have absolutely no clue what can be taken instead of it so I would most definitely not risk giving any advice on this...
The drugs are not expensive via CoC ( £80 every 3 months- a lot less than my monthly Starbucks tab!) But the original consultation is the painful one ( £400 here)
I was told different...alternate vermox and doxycycline but take statin and Metformin continuously
Barb xx
That's what I was told too, Barb. Maybe it's different for some patients. I don't know.
Sophie ❤
I better check! 🤪
You should have dosage instructions on the packs, Marie.
So it should be:
1.Bolamyn SR tablets prolonged release ( metformin hydrochloride ) 500mg : 1 per day for first 2 weeks then 2 per
day
2. Vermox 100mg : 1 daily. Alternate monthly with Doxycycline.
3. Atorvastatin 40mg : 1 daily for first 2 weeks then 2 daily.
4. Doxycycline 100mg . 1 daily .Alternate monthly with Vermox.
Kindly confirm, thanks so much!
Yes
Mariote, I am not a doctor so cannot offer medical advice. I would advise you to speak with an integrative doctor if you are interested in the COC protocol. I take my doctor's advice. He adjusted the dosage that the COC doctors prescribed, so we are all different. I could tell you the dosages I take, but that may not be the same for you. I would recommend that you seek medical advice.
All the best,
Sophie
I'm a tightwad LOL ... did you read below what barb and soph wrote? important! <3
Yup. Sorry I was trying to work it out from invoice ( I am on holiday) ,I got confused ...Yes the alternate is with Vermax... sorry!
Oh glad we got that one sorted as I thought I’d been given a different regime or had got my knickers in a twist!
Barb xx
Was looking at my aunt's old notebook of our ancestry and I actually have a knickerbacker in mine lol ... not even sure I spelled it right. <in ref. to knickers> On here just lurking this morning. Sometimes I read my own posts and they sound so foreign to me, like "what was I thinking?", not on this string though. I did tell you I couldn't take atorevastatin, dinna? It made me forget what I was saying mid-sentence; I couldn't believe LIPITOR could do that to my brain, so I tried it again a month later and it did it again! I will admit that at almost 66 my memory isn't the greatest, but I'm not a bumbling idiot like I was on lipitor/atorevastatin. By the way, thanks for the info on the antibiotics! love ya and God bless you and heal us all in Jesus name, amen. <3 xo
Hi...I’m 66 now...just had a birthday
We are not old at all...before the pain from mbc mets I was able to do a lot of fitness things...ride..walk miles...very bendy still due to yoga
My memory sometimes lets me down but I do crosswords and sudoku and read constantly which keeps me alert
I agree about reading our old posts...I avoid doing it as I seemed a bit crazy in some of them...maybe I’ve progressed to a better mindset
Barb xx
Happy birthday Barb!!! 🎈🎂🌷🥳🎁 🐎🌈! Enjoy every moment! ❤️🙏❤️
Doxycycline is a tetracycline antibiotic...amoxicillin is a penicillin type so they work in different ways do not sure
Barb xx
ty Barb! <3
I understand the Atorvastatin is more "effective" because it's oil soluble. Other statins (Rosuvastatin) are water soluble and not as good.
Did you see Hari Kuttan?.. he’s the chap I saw and sounds like the same person...a bit on autopilot and told me at great length what I already knew
Anyway it is what it is...I’m not going to take the statins until I’m feeling ok on the other stuff...no point feeling crap..need good QOL but I’m keeping an open mind
Barb xx
Hi Marie,
First off, I had to smile about how your doctor is basically your dealer!!😂
Here's what I take as part of the COC protocol, along with the dosages:
Metformin x2 500mg
Atorvastatin x2 40mg at the same time
Mebendazole x1 100mg
Doxycycline (alternative with mebendazole) x1 100mg
My oncologist reiterated what she said in May about how she is not in favour of the COC protocol, but she was delighted with my amazing results, which I think is down to a combination of factors.
While I believe the letrozole and zoladex are working and the zometa is protecting my bones, I also believe the COC protocol, supplements, diet and exercise have also helped. I also detox daily (Epsom salt baths with essential oils) and I drink a liver cleanse recipe and other drinks too. I also add frankincense to my breast twice a day. Has it helped shrink the tumour? I don't know. All I know is that the primary tumour has been steadily shrinking over the past 12 months or so. I am not saying others should copy me; we need to do what we feel is best for us. But what I will say is that if anyone plans to start or add something new they should research it and seek professional medical advice.
Sophie ❤
Thanks Sophie. Yes we all find our journey, what works for us and what we are not quite ready to try... Being the sceptical type , CoC is a massive step for me so will stick with that for now but no doubt as the list of remaining conventional treatments reduces my appetite for alternatives will grow and I will turn to you and other ladies for advice... You are our trailblazer 😂 Please continue to share your findings?
You're welcome, Marie. I will keep sharing what I am doing. I have another prescription to collect on Monday, but I'll share more about what I am up to in due course! I haven't even told my oncologist yet! 😂😂
Hi Sophie, it's been 6 months since your post, would you very kindly share your experience with COC today? many thanks.
Hi Mariote,
I started the COC protocol in April 2019, and I am still on it. I no longer see the COC doctors though as my integrative doctor prescribes those drugs, and more, for me. So I found it cost effective to stick with one private doctor, rather than two. He does not charge me every time I need a prescription, which the COC doctors do. They will not renew your prescription unless you have a follow-up consultation with them every three months. My experience has been a positive one so far and I do not have any adverse side effects from the drugs. I had a CT scan this morning, so will get the results from that on the 24th.
Thanks,
Sophie
Thanks so much, Sophie, for taking the time to share your experience, I wish you the best.
You're welcome. I wish you all the best too. It is helpful to share experiences on here. We can learn so much from each other.
Hi Marieleb, it's been 6 months since your post, would you mind sharing progress with the COC protocol? Much appreciated.
I did not renew COC back in November...Combination of disease progression, cost and "delivery vehicle"... The person I saw was patronising, irritating and to be honest quite useless. I could not come round to the idea that I would have to give him an extra £280 to basically write up a prescription ... Don't get me wrong it is the not the cash itself, I have it , it is the principle... I spent the money on taking the family to a show at Xmas. So if I could access the drugs via the normal medical circuit I would happily pay for this but the set up here involves paying a self proclaimed expert in a basement in Hartley Street and I just can't bring myself to support this... I know a few people on this site are still on COC protocol.
I agree
Nobody from COC has bothered to chase me up when I requested the membendazole on its own ( I didn’t get on with the statin and diabetes drug and I don’t want to take tons of antibiotics for obvious reasons)
Just showed that there interest is primarily money
Harsh but true ( my opinion)
Barb xx
Oh I know you guys do this in a different way
Not to worry...I wasn’t fussed about my birthday this year anyway
Thanks though for your greetings
Barb xc
Marieleb, thanks for your kind and candid response, I wholeheartedly agree. All this time since my dear wife diagnosis, I've come across all these people in cancer clinics, protocols and so on, whose only motivation is to cash in on plight of the sick, it's so infuriating...
Perhaps I should clarify the COC protocol...I am on all the drugs just not through the Care Oncology. In August in the US they got rid of all the drs they had including the one I was so very fortunate to be matched with. They opted to use only oncologists but I had the option to stay with my Dr and discontinue with them which I did. She is the most wonderful Dr. I have her personal cell phone her personal email and with the exception of the membendazole since that is a specialty mix, she sends my scripts to my own pharmacy so it can go through my health insurance. I stayed with her because the people through Care Oncology just wanted my money and didn't give a rats ass about me...never once checking in to see how I was doing or managing all the meds. Hugs to all you wonderful warriors!!
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