I am about to start chemo again and feel that after six years I am running out of options. I would be interested to know if anyone has had success using the off label drugs recommended by the Care Oncology Clinic.
My oncologist said that he could not discuss this and I would really like to hear from ladies who have had good results from following their protocol, and likewise, those who haven't.
Jenny
I also would be interested to hear of anyone who has been treated and followed their regime. I am not keen to do any more chemo as I feel I am not living my life as I am 77 fairly fit but as treatment has gone on it takes me longer to recover.
That's how I feel. I am 74 and about to start my fifth treatment.
Jenny
I think we may not get a reply. There was a lady on here that had started the COC regime that was about a year ago. I did find the post and asked her how it went but havent had a reply.
healthunlocked.com/ovacome/.... FOUND this post hope I have copied it correctly. Several people using COC but not much feedback. Sorry if link doesnt work
Thank you for that. I know a few people in this site have used the COC protocol, so it is strange that they haven't replied. It makes me think that if they were enthusiastic about their treatment, they would be sharing it.
Jenny
Think you may be right
Hi thereI’m one of the people who replied before about the COC protocol.
I was diagnosed with clear cell 3b in December 2018 and had debulking and then 6 cycles of the usual chemo. I was then NED but was basically told they would just wait for it to come back as it’s rare and aggressive and there wasn’t much more they could offer. I’m not very good at sitting around waiting for something to happen to me so investigated the COC and started the protocol around June/July 2019 as it felt better than doing nothing, at least mentally.
I was then NED for about a year. In summer 2020 they found some retro peritoneal lymph nodes lighting up but they were small and although they grew, grew very slowly. I was monitored with scans etc for about 18 months - one lymph node continued to grow very slowly. My doctors generally seemed very surprised that it was growing so slowly. I’m afraid I was too nervous to tell them about the COC protocol - which I was still taking- I personally feel it was a factor in the very limited recurrence.
Anyway in the end, because of the continued slow growth reaching a point where it might impact my kidney and possibly become inoperable they decided to operate to remove the lymph node in November (2021). The cancer was in the lymph node but very contained and this time (unlike the last time) was not in any other lymph nodes or in the washings. I’ve still had to start another course of chemo which is making me feel rubbish but I agreed because I think I’m the sort of person who needs to be doing something. I’ve stopped the COC protocol at the moment - as soon as the surgery was scheduled - and won’t start again until this course of chemo is finished as don’t feel comfortable not being completely open with my doctors - but plan to start again as a sort of ‘maintenance’. I feel that it’s at least possible that the very slow and limited recurrence I’ve experienced may have been helped by the COC protocol drugs. I had no side effects at all while taking them and was doing loads of walking running and swimming.
I feel it’s worth exploring the COC protocol - they do monitor very carefully with blood tests etc. I personally found it hugely helpful to be doing something - I’m sure it helped my mental state if nothing else.
I hope this is helpful.
Thank you this is very helpful. You say you havent told your oncologist but how did you get copies of your scans and blood test results which if I understand COC need. Am very grateful for your reply and think this is the road I may well take. May you continue to keep well.
I asked for copies of scan reports, diagnosis letters , bloods etc from my cancer nurse and they posted them. You don’t have to say what they are for. I went straight from 1st line to 2nd line treatment as became platinum resistant v quickly. So I’m with COC now but also have a strict supplement and diet protocol. Too early to say if it’s working but I feel good. My oncologist knows what I’m taking but does not approve of it. He did check the list I gave him though to make sure nothing really worried him. I am throwing everything at my cancer - doesn’t make it easy to know what’s working but fingers and toes x’d something in the cocktail does!
Thank you for your reply. It was really helpful to read. I have been thinking of doing the protocol too.Please can I ask if you take supplements too or follow a restricted diet?
Thank you xx
Hi I’m so pleased my (long!) post was helpful - I don’t really take any additional supplements - just B12 when I remember and vitamin D and a magnesium (mine is often low). I’ve also been prescribed 75mg aspirin. I’m a pretty much life long vegetarian and have been vegan on and off but otherwise eat pretty widely - I don’t eat a lot of sugar or junk foods but do eat them if I feel like it! As well as COC I really do believe in exercise and am still walking a lot post op and on chemo tho I am tired on the whole - not swimming or running again yet but I’m hoping to start again asap.
Thank you for all this info I do eat small portion of meat but try to eat meat one day, fish anothernd vegetarian another. Big big believer in walking. I take B12, Vit D and selenium. I was lucky enough to have 18 years free before first recurrence in 2020. That first time I think I took something called IP6. Will have a PET scan soon to see how lymph nodes are responding now but think it will be a definite yes to giving COC a try
Thanks for replying. i am still not sure whether to give it a go or not, but I do think that taking a bit of control of our treatment does have a positive effect mentally.
Jenny
Jenny, I’m 71 and on my first recurrence. I’m stage 4 high grade serous BRCA negative and now with mets to liver. I’m having carbo/Doxil now. I had planned to go to Canada for mistletoe therapy this month , but can’t because of Covid and shaky flights with the airlines. It may not be for everyone, but mistletoe injections are something you can do that might make chemo more tolerable and effective. Because I have been unable to try this myself, I can’t speak from experience and am not advocating it. I researched it quite a bit. I mentioned my plan to my oncologist and he gave no comment on it at all. After reading your post about feeling that you might be running out of options, thought I would mention mistletoe therapy in case you might want to read about it yourself. Best wishes in 2022,
Sashay
Thank you that’s helpful to know as the whole supplement list is too daunting and too expensive. I’m mainly vegetarian and do try not to eat rubbish food. Think your right about the exercise xxx
I've been on COC protocol for over 3 years now. I would say that what it has done for me in that time is to make chemo treatment more effective for me and possibly to increase time between chemos. It's not an either chemo or COC option unfortunately.
I started the protocol just as I was having my first recurrence, 14 months after first line treatment. I had 4 carbo caelyx, then scan showed all clear so I had one more to be sure and stopped after 5. I was then in remission for 18 months. Third line chemo I had carbo only and back to NED after 6 rounds. I am now on Niraparib plus COC, so far only 6 months but I am so far stable.
I don't have any side effects related to the COC drugs. There is plenty of research to support each of the drugs, so that is where I would start if I were you. Don't expect a cure but look carefully at the stats. For me as BRCA neg the stats are more encouraging with COC protocol than they are with niraparib (but neither stats are amazing!) yet niraparib is hailed as something I would be crazy to refuse. HGS OC is very aggressive and pretty much relentless so I believe in doing everything I can to hold up its progress.
Thanks for your feedback. I have just come off Rucaparib, as it wasn't working for me. The oncologist is suggesting either single Taxol or Anastrazole, and I'm not sure if Anastrazole would mix with the COC drugs.I think I will contact them and see what they say.
Jenny
Do you know if this protocol is in the USA?
Yes I believe it is available in the UK and the US check out their website
Know this post was initiated by Jenny and am so pleased she asked there are some really helpful replies given. Think I am going to contact them after I have my next PET scan. Like Blue petrella says dont expect cure but we have to give things a try to help. Bless you all for taking the time to pass your experience on, Liz
I agree. So pleased we have this forum to discuss our queries and concerns.Jenny
I have read the rainbow diet (Woollams), he has a good website too, How to starve cancer (McLellan), and am a member of a couple of FB pages (Always Hope Cancer and Jane Mclellands off-label drugs for cancer). I am taking supplements and off-licence drugs to cover the ‘five hallmarks of cancer’. It is ruling my life at the moment as on weekly chemo too but hoping it will get me to some sort of remission and I can go onto a maintenance diet. It really helps my head and keeps me in a positive frame. Not for everyone though x
Hi. Yes, I have the Rainbow Diet book, and Jane McClelland's book too. I really don't think I could work out the pathways and how to block them, though I do take supplements and have a good diet. Really just trying to maintain as healthy a body as possible in the circumstances.
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