Care oncology clinic

[Scandia68]

Hi everyone

I haven’t been on here for a while as I have been busy pretending I don’t have mbc 🤦‍♀️. My treatment seems to be working for now but I’m beginning to feel I need to be more proactive and get my head out of the sand. For all of you that started with the drugs from the care oncology clinic are you getting on ok with the drugs? Was it worth going? Would you recommend it?

I’d really appreciate your input.

[Barbteeth]

Hi there

I had a consultation there in June

I also had SABR radiotherapy in July so I think I chose a bad time to try the drugs from COC as I felt awful on them but wasn’t sure whether this was the side effects from the radiotherapy

I contacted COC and they suggested taking one drug...Metformin first and if I felt ok to introduce the other drugs gradually

I did this but still felt rubbish...apart from the membendazole

I then ran out of that drug and requested a repeat prescription for it but they wouldn’t prescribe it unless I came to London for another consultation

I just felt that they weren’t too bothered about me as an individual and were more interested in getting consultation fees...the membendazole can be bought over the counter anyway

I’m sort of dithering about doing the fembendazole instead...I certainly don’t like taking statins and the Metformin upset my tummy so all in all the whole thing wasn’t a success for me and I was about £600 out of pocket ...consultation travelling to London and the drug fee as well

Don’t let me dissuade you though you may be fine

Barb xx

[Scandia68 in reply to Barbteeth]

Thank you so much for your reply. You have actually put into words what I’ve been thinking myself. Xx

[Barbteeth in reply to Scandia68]

Well I was desperate to try anything but you live and learn!!

Barb xx

[Hidden]

Hi Scandia,

I started following the COC protocol in April, and was fine on the drugs. Then I hired a private integrative doctor who also follows the COC protocol, but he added more off-label drugs and recommended additional supplements. So as he was on board with the COC protocol, I stopped seeing the COC doctors, but am able to continue taking those drugs as my integrative doctor prescribes them.

I am able to get some for free locally (using the prescription he sends whenever I run out) and others from Gould Pharmacy, which works closely with him. His consultation room is actually downstairs from the pharmacy. If you can get your GP, oncologist or an integrative doctor to prescribe the drugs, then you can save yourself from having to pay the COC consultation fee every three months.

It is up to you to decide what to do, but I would really think things through carefully and then you can make an informed decision.

All the best,

Sophie

[Scandia68 in reply to Hidden]

Thank you that’s really useful who is your integrative doctor?

[Hidden in reply to Scandia68]

You're welcome. I see Dr Callebout, who was mentioned in Jane McLelland's How to starve cancer book. Let me know if you want his details and I shall send them to you. He is an excellent doctor.

[Scandia68]

Yes I know of him and I was planning to go and see him but did wonder if he was any good. Does he want to see you regularly or is he happy to leave it for a while

[Hidden in reply to Scandia68]

I just spotted your question. I didn't see it earlier! Dr Callebout is very good. I get to decide when I will see him. He doesn't push me to see him every three months or so, and nor do I have to see him each time I need a prescription. I just let him know and he fills it for me.

[GollyG]

Hi, I started with COC in the summer and recently had my second telephone consultation with them. I am coping fine on the drugs and I value the opportunity to talk things through with another consultant as the hospital surprises me with a new face every time I go there! It's expensive but a price I'm happy to pay at the moment. Good luck with it all.