Article in Telegraph re COC

[Sherrym]

Please read all of you. It may be worth you giving this protocol a try.careoncologyclinic.us12.lis...

I feel great

[Katmal-UK]

Ill have a read, thanks. Great photo, looking good !

[minard]

Well SherryM - you're looking good! Thanks for the link. There seems to be growing evidence that COC is offering a real alternative, or indeed accompanying treatment, to the standard NHS offering. Are you one of their patients? It would be good to hear from those who are/were patients, or are considering COC. I'm certainly open to a non-chemo approach.

Caroline

[Yoshbosh in reply to minard]

Hi Caroline,

I'm following their protocol, and they would see their drugs as something to take alongside chemo (if you are having chemo), rather than a straight alternative. However, they can best advise you depending on whereabout you are in your treatment.

I started taking the drugs in between chemo 5 and 6 (August 2016) and have continued ever since. My CA125 before my final scan (after the end of chemo) was 7, then dropped to 5 and has gone down a further point to 4. I guess I won't ever know if the drugs have helped, but I have to assume that something is going on!

Yosh x

[Nicky100 in reply to Yoshbosh]

That is amazing Yosh! Are you still on it now? Xx

[Yoshbosh in reply to Nicky100]

Yes, I'm still taking it. At last review CA125 was 7 so still very low and the scan in March (6months post chemo) was still NED. I find the drugs very easy to manage.

[Sherrym in reply to Yoshbosh]

Me too Caroline-I am sure they help & I have no side effects.

I started before chemo but after surgery

[Sherrym in reply to minard]

Yes, I am a patient. Early days I guess but doing fine

[Sherrym]

Hi Katmal. Just realised that the link cannot be reached by the gobbledegook http address I copied & stupid phone pasted!!!! Doh!

Google telegraph COC CROWD FUNDING anyone who is interested.

I posted pic to show I at least look well on these drugs

[Hidden]

Hello, how did you access this trial? X

[Sherrym in reply to Hidden]

I think I emailed them initially, but the phone number is 020 7580 3266. I spoke to Raphael but I believe he on paternity leave at mo.

This is NOT NHS funded, so you may even be answered by one of the doctors. So far, I have spoken to a neurologist & a stem cell surgeon, both certain they are getting some great results with this protocol. However, you must of course decide for yourself. I took my extremely sceptical, clever brother & he said definitely worth a try. Also, if I feel 'enabled' in this way (actually helping myself) my mood & mind stay in the right place. Does that make sense?

Sorry, I sound like a bloody Ad Agency.

Good luck

[Hidden in reply to Sherrym]

Totally get your comment about enabling yourself and state of mind. My husband is the pessimist, I'm the optimist so he's not keen but I'm definitely going to explore this. Thank you for sharing.

Lisa x

[Yoshbosh in reply to Hidden]

Hi Lisa, I took my mum along as my independent ears. She was skeptical but totally won over by the end. They explain how cancer comes to exist and by the end of it, you almost feel sorry for it, like it's a loveable rogue! It made me feel more in touch with what's going on in my body and helped me change my inner dialogue from fighting and war words, to healing. I know that sounds a bit new age, but it has really helped me to cope. X

[Hidden in reply to Yoshbosh]

Thank you Yoshbosh,

I talked to them yesterday and will make an appointment after my next oncology appointment. I really appreciate your reply. X

[Sherrym in reply to Hidden]

Good luck , Lisa. I'm seeing COC again on Tuesday. If I find out anything new, I will post it

[Hidden in reply to Sherrym]

Thank you x

[Orsolini]

Hi there - this is SO interesting thank you. Also the comment from Yoshbosh. Thanks again - Nicola

[LesleyGreengran]

Can you give us some idea of what kind of treatment it is?

[Sherrym in reply to LesleyGreengran]

Metformin, statin, then alternate months of a type of wormer & antibiotic.

Article in Telegraoh details it all. I had no side effects but bear in mind I started alongside chemo so prob wd not have noticed

[LesleyGreengran]

It's ok I found the telegraph article. It's gamma knife radiotherapy and is being reviewed so not available on the NHS though it is to those who can pay form it.

[Sherrym in reply to LesleyGreengran]

No, wrong article.

In YESTERDAYS telegraph, huge picture in the Health section of a young woman who initially had very little time left. That one.

If I google telegraph COC crown funding, it pops up first

[trix70]

Hi, I tried this back in June 2015, and was on it for about 6 weeks. Then the metformin started to give me stomach aches, then I had the worse scan possible and so it had not helped. Due to this and the cost I gave up. It's pricy but the science behind it is good, it's just that my cancer was too far advanced for it to work I think.

Pleased it's working for you.

[Sherrym]

Sorry it didn't help Trix. I was so ill with chemo I prob just didn't notice any side effects from metformin etc.

Well, it's early days yet. Been on the drugs for 18 months & just hope to stay well

[111173]

I did try it in 2016 with a very open mind and my GP was supportive. After a few weeks I did experience some side effects e.g. "Pins and needles" in my arm. I suppose I became a little uneasy when my Oncologist said the drugs could potentially cause liver problems, that I decided to stop. Third round of chemo finishes in February - maybe I should give it another go.

[Sherrym in reply to 111173]

So far my liver ok, but I have it checked regularly & take milk thistle every other day