COC

[Scandia68]

Morning friends x I am just about to book an appointment at the COC but I have a question before I go ahead. Am I right in thinking they have just 4 meds’ they prescribe and if so how can those be right for all cancers? I’ve probably got this wrong but I was following a thread on Facebook and this is what it sounded like.

[blms]

What is COC and where?

[Scandia68 in reply to blms]

Care Oncology Clinic in London

[Hidden]

Yes, that's right. If you want to add any others, you will need to find an integrative doctor or another practitioner to prescribe other drugs.

[Scandia68]

Thank you, this is what I’m thinking and no I don’t use Facebook without checking first which is why I’m asking the question. I must say if they only use 4 drugs for everyone the red flag is plastered on my forehead. 🙄

[Baseface]

Hey, hope you don’t mind me jumping in.

My wife is suffering from secondary cancer and we are reading a lot around COC and have done a fair bit of reading on why these drugs aren’t used. as we had the same concerns.

The problem as I see it is this. You can’t have drugs prescribed that you don’t need. For example

Statins control cholesterol so you need to have a heart/weight condition of somekind.

Metformin manages glucose so you must be diabetic

Mebendazole is an anti-parasitic, so you need a parasitic worm

Doxycycline is for shyphilis and other infections so.. we I’ll let you fill that gap

What I understand is that to repurpose a drug for cancer means re classifying it. And because it is off license there is little money to be made because anyone can make it. Like aspirin or ibuprofen. So there is very little profit to be made which makes it commercially unviable.

But for a drug to become part of conventional oncology treatment (for cancer) it must go through the process of reclassification through testing. But companies are trying to find there own patentable new drugs, because that’s the business model. So useful drugs will sit on the shelf even though they maybe helpful.

It’s everyone’s right to do or not do as they wish but if you are considering something like the COC, it makes sense to dig a little deeper as to why it’s not available already, to help make a decision. Hope the above helps a little but I encourage anyone to read more.

I agree it’s not cheap but it’s certainly not expensive compared to things others may be willing to do.

I hope you all find the right path for you.

[Scandia68 in reply to Baseface]

Thank you for jumping in that is really helpful and makes sense, I think my GP would be onboard with it. It’s not expensive if it makes a difference I just feel I’m drowning in info at the moment and picking my way through it. I still find it a little strange that we are talking the same 4 drugs for every type of cancer when we know how different cancers can be.

[Baseface in reply to Scandia68]

The info is there on the site which explains everything. It’s not a cure, it’s an arm of treatment. Oncology treats the specific cancer and the additional drugs disrupt metabolic mechanisms of cancer. Or that is the ideas anyway. COC are running a trial recording the findings for all patients I think which will be published in a few years.

The idea being that you cant ignore the data if it is positive and it will be picked up and tested to be reclassified. Unfortunately that might mean double blind testing which means people will not get the benefit if there is one.

I encourage you to push through the technical medical jargon. You can find the research papers for all drugs and cancers of pubmed. Just read the conclusions...

I am no expert and do not advocate one route or another. You must find your own path and I wish you well with that.

[Teddielottie in reply to Baseface]

Sorry your wife is suffering from secondary cancer ... are you able to share what type of cancer and treatment she is on , and are you having discussions / treatment with COC?

[Baseface in reply to Teddielottie]

Secondary BC to the spine. I am afraid that posting all our discussions is probably a separate thread.

When I have time I will think about what I could say that could be useful.

[Baseface in reply to Baseface]

Sorry but yeah the easy stuff..

ER+ secondary BC

Goreselin

Palbociclib

Letrazole

Colecalciferol

Denusomab

[Teddielottie in reply to Baseface]

Just need to ask, are you an employee of COC or in any way connected to it ? Thanks .

[Baseface in reply to Teddielottie]

Absolutely not

[Baseface in reply to Baseface]

It’s a reasonable question. I probably haven’t filled out my profile or any of the normal stuff. I joined a forum recently and was quite open about our journey so far. I met with some unhelpful comments and had my self removed.

I felt compelled to add some balance to the COC comments here. I don’t advocate any treatment paths.

[Baseface in reply to Teddielottie]

I updated my profile, you can see a little bit more of our experience so far... Any questions just ask. PM if you like

[needabreakfromcancer in reply to Baseface]

My primary doctor ordered the metformin for me and it has been working. A skin cancer on my stomach went away after a week. One of my liver mets appears to be dying after a month. Also, my bone mets did not progress. Yet my two oncologists sound like broken records claiming that it doesn't work. You know what hasn't worked for me, aromatase inhibitors, fluvestrant and Ibrance. I got liver mets while on the fluvestrant and my bone mets grew on the other drugs. I am a borderline diabetic. You may be too and not realize it..

[Marieleb]

Hi

Assuming you are UK based? I am also considering COC ( actually sent them my medical info over a week ago and heard nothing back)... I have submitted the 4 drugs to Royal Marsden medicine team to confirm they can be used along side ibrance and letrozole ... Should hear back in a couple of weeks.Doesn't answer your original question ( but others have) but thought I would share anyway!😉

[Scandia68 in reply to Marieleb]

Thank you, please let me know what the Marsden says. We see Dr Johnston there.

[Marieleb in reply to Scandia68]

I am at Sutton under Dr Somaiah. Yes will let you know. 2 other ladies here have either engaged with COC ( Sophie P) or about to Barb... Sophie's blog was very informative.

[Baseface in reply to Marieleb]

We're still waiting too, few weeks since we applied. Rang and they said there was a huge backlog.

[Marieleb in reply to Baseface]

I have received message from Marsden. Will private message it to you .

[Barbteeth in reply to Marieleb]

Hi there

I sent my records to COC and I received an e-mail fairly quickly and an appointment for about 3 weeks later..going next week...will decide what to do when I’ve spoken to the doctor..will keep an open mind

Barb xx

[Marieleb in reply to Barbteeth]

Hi Barbara

Hope you had a nice break in Italy. The Marsden came back to me on the medicine checks. Let me know if you want me to private message them to you... I had to chase COC and resenr all my doc but they have now acknowledged receipt so 🤞...I am not doing anything until I get PET results anyway on 19th so no rush! Let us know how you got on.

[Barbteeth in reply to Marieleb]

Hi

I get my PET results tomorrow and I’ll be having either SABR radiotherapy if there’s only a few liver nodules...if there are more then it means a change in meds..eeek..I may even change my mind about COC appointment depending on this result...I can cancel the appointment...I’m interested in the off label drugs so I guess I have nothing to lose by at least having a consultation (apart from £400!!)..I’m a bit undecided especially as I’ve read these posts on here

I don’t seem to be able to receive personal messages on this site from ladies who are following me..however I’m interested in what the Marsdon said re off label drugs so if you would e-mail me? My address is

[e-mail]

All the best

Barb xx

[Marieleb in reply to Barbteeth]

Sure will send by email now. All the best for tomorrow... The wait between PET and appointment is always the worse... Will be thinking of you .

[Barbteeth in reply to Marieleb]

Oh that’s so kind of you

Thanks

Barb xx

[mariootsi]

Do what you think is best for you! Research on your own. Don't go by Facebook. They are not doctors nor researchers!

[Mimigram]

COC is doing a trial study on those four drugs only.

Mimi

[Red71]

While the idea that using drugs for what is called off label reasons is attractive and is done by many practioners...ie taking Effexor for hot flashes when it’s purpose is anti-anxiety; the idea of prescribing the same four drugs for different cancers makes me anxious. Since the meds I’m taking are working wonderfully (Ibrance and Letrozol), I see no reason to add more drugs with more possible side effects. My husband takes Metforman for diabetes and he has had trouble with quite a few GI effects. Statins give many people muscle and memory problems and most of us have those problems already. I can understand trying this if you cancer is not responding well to what you are on, but my personal opinion is that you are being the guinea pig in their studies and that they are definitely making money off of this. If you want to do it, go into it with your eyes wide open and don’t be afraid to stop it if it gives you problems or isn’t making anything better. If it helps, wonderful! Elaine