Coc protocol

[Jintyp]

Hi has anyone here done the COC protocol while under the care of the Beatson in Glasgow? Toying with the idea of contacting the clinic but not sure how oncology team will react. Opinions please ladies x

[Yoshbosh]

Hi Jinty,

I'm on the COC protocol, but not at the Beaston (I live in Hampshire). My oncologist wasn't very encouraging and didn't even research it herself, but she didn't try to persuade me not to go, she was just concerned that I would want to stop chemo, and that wasn't the case. You have nothing to lose from contacting the clinic and seeing what they say. Good luck!

Yosh x

[85live4ever in reply to Yoshbosh]

Hi Yosh, I haven't heard of this COC protocol before I tried to find out more on Google but it bought me back to this page. Is it helping you?

I live in Southampton in Hampshire. My onc only believes in cancer treatments & nothing else. When I suggest diffrent things that might help me fight this oc they don't think it will help or hurt. So far nothing I have done has stopped it from coming back. Maybe they are right but it doesn't stop me from trying to find something that might stop this cancer in its tracks. Thank Cindyxx

[Yoshbosh in reply to 85live4ever]

Hi Cindy,

COC stands for Care Oncology Clinic - it's a clinic on Harley St which offers 'off label' medicines alongside chemo to improve effectiveness and after chemo as a maintenance therapy. The drugs are all licensed for other ailments but are thought to have strong anti-cancer properties. I say 'thought to have' because there's no stage 3 clinical trial to prove it, but loads of lab-based evidence which points in the right direction.

There are a few of us on here who have sought the advice of the clinic. So far their mix of drugs is helping me, but I've only been NED for 6 months so it is hard to say. They drugs are all well tolerated and most patients take them without any side-effects (they include metformin and atorvastatin).

Co-incidentally, I had my surgery in Southampton - I wonder if we had the same surgeon?!

Yosh x

[85live4ever in reply to Yoshbosh]

Hi Yosh, that sounds interesting I don't think it would hurt as long as the drugs are not harmful.

I am on golden paste I make my self, smothies with 6 fruits & 4 vegetables every day, pure lemon juice & lots of vitamins but once again it's not worked. I start chemo on the 26th of April.

I am please to hear you are NED & hope you stay there for good!!!!

I can't remember my surgeon but I have spoken to quite a few woman who have had the same surgeon just can't recall his name right now. Thanks for the information I will look into it but I don't think my onc would be impressed with it. Take care love Cindyxx

[Smithl13 in reply to Yoshbosh]

Hi can I ask whom you used please as we are also in Hampshire x

[27-359]

I asked my oncologist about it and he was quite dismissive. I also spoke to my brother in law who does cancer research, and he investigated them and also didn't give them much credence. He said that if the drugs they use worked, the NHS would be using them.

I think I would be tempted to contact them if I felt that the treatment I was on wasn't working.

Jenny

[Jintyp in reply to 27-359]

That was my feelings too- if the drugs work why spend all that money on chemo? Will wait till I see my onc and ask his opinion

[minard]

I was really interested in COC and had contacted them to make an appointment. I then picked up with my oncologist, providing her with links to both their own website and Daily Telegraph articles. Her feedback was that she could totally understand why I wanted to consider integrative options at this stage, but she wasn't convinced about COC's experience with ovarian cancer specifically (the consultants' backgrounds are apparently haemotology). She also said that whilst there was some evidence that aspirin works, recently the use of statins had been questioned again. Ultimately she has left the decision on whether to follow this through up to me.

So for me, it's just another of my options, and right now coincidentally I'm asking for a second opinion from the Beatson (I'm being treated in Edinburgh). Hope you get some more advice from others in order to make your own decision, Jintyp. All the best x

[Katiebairdie]

Hello, I've been considering COC for few months on and off. Spoke to oncologist about six months ago, she had never heard of it but said go ahead if you like. My G.P. said definitely not. Move on six months and I mentioned it Oncologist again. She now knows all about the clinic and has two other patients who use it. Neither of them is doing very well. She advised against it. Kathy.

[786Asma_believer_ in reply to Katiebairdie]

that's exactly what my oncologist said... your not in high Wycombe are you?

[Katiebairdie in reply to 786Asma_believer_]

Yes I am.

[greenpink]

Why does the NHS spend money on chemotherapy when perhaps some common existing drugs can help: aspirin, metformin and statins etc. Perhaps because the pharmaceutical companies need to cover their costs of research and development, plus make a profit. I believe Cancer Research UK is funding research into aspirin and cancers. Really, as someone pointed out already, trials of existing drug coctails/ combinations taken with different chemotherapy and without chemotherapy by themselves could prove interesting

[Hidden in reply to greenpink]

But would be unethical as there is an evidence base for the effectiveness of chemo and there's not as yet for the other combo.

A clinical trial of chemo plus or minus the others would be interesting.

On COC regime, my oncologist advised me to save my money and ask my GP to prescribe if I wanted to try it. I think she thought it wouldn't make a difference either way.

[greenpink in reply to Hidden]

Yes, as you say unethical. I was thinking more of trials involving chemo with reconstituted drugs and just chemos alone, as they are given now. But I don't think I explained that very well

[JasonLA]

The COC Protocol and its results for Glioblastoma have been certified by a biostatistician company and are currently up for peer review. Here is information from this page: careoncology.com/faq/

Positive results for the COC Protocol pilot study

An initial pilot retrospective analysis of 95 patients attending the clinic with glioblastoma multiforme type IV (GBM IV, the most aggressive type of primary brain cancer) revealed striking results, with highly significant improvement in overall survival when compared to published data in a comparable patient population (ie, Public Health England data for patients under 70 years old diagnosed with GBM IV between 2007-10):

Median survival for patients receiving the COC Protocol alongside maximal care (surgery plus chemo-radiotherapy) was 27.1 months, compared to just 14.8 months for GBM patients receiving maximal care in the Public Health England dataset.

2-year overall survival for patients receiving the COC Protocol alongside maximal care was 55.8%, almost double the 2-year survival for GBM patients receiving maximal care in the Public Health England dataset.

This analysis has been independently audited and verified by external biostatisticians, and is now being prepared for peer-review and publication.

Although preliminary, these data are hugely promising and represent a real potential breakthrough, especially for patients with aggressive cancers like GBM, who have limited treatment options. We recognise there is now an urgent need for more high-quality research into the potential benefits of the COC Protocol. That’s why patients who join the Care Oncology Clinic are asked to join our research programme, to help generate the data needed to make the COC Protocol available to everyone who needs it.

For more information about these initial research results, and about the METRICSplus research programme please contact the Care Oncology Clinic.

[Rowan66]

Realise it was a few years ago but wondered if you chose to use the COC protocol?