General discussion

1234annie

Care Oncology Clinic

Morning guys,

Just wondered who else is taking the Care Oncology Clinic protocol? I'm having a bit of a rough ride with my pills, I don't think it helps that I have an illostomy.
Annie :x: :x:

Tanguera

@1234annie Sorry to hear you are having a rough ride with the pills. I hope alternatives suggested by @GD62 work for you or the clinic comes up with something.
I've been on COC since mid February 2020. My understanding is that their protocol is pretty much the same with adjustments for side effects/intolerances. I take
Metformin 500mg twice a day
Atorvastatin 80mg once a day
Flarin 400mg three times a day
Doxy 100mg for a month alternating with Vermox for the next month
So far I have had no side effects (apart from a mild self inflicted one - a glass of wine after metformin is not a smart move!) But then I have colostomy, not ileostomy, so must be easier. Liver and kidney function OK
Mind you, I had rapid progression since Jan. I hope COC protocol had some effect but not enough to eliminate the second line of chemo that started in April.
Good luck! :x:

Rachel

Hi, I would also recommend the Doxycycline taken with a glass of milk this is how I take mine every morning.. :x:

1234annie
Quote from @Rachel:
Hi, I would also recommend the Doxycycline taken with a glass of milk this is how I take mine every morning..

Are you on the protocol @Rachel ?

1234annie
Quote from @Tanguera:
@1234annie Sorry to hear you are having a rough ride with the pills. I hope alternatives suggested by @GD62 work for you or the clinic comes up with something.
I've been on COC since mid February 2020. My understanding is that their protocol is pretty much the same with adjustments for side effects/intolerances. I take
Metformin 500mg twice a day
Atorvastatin 80mg once a day
Flarin 400mg three times a day
Doxy 100mg for a month alternating with Vermox for the next month
So far I have had no side effects (apart from a mild self inflicted one - a glass of wine after metformin is not a smart move!) But then I have colostomy, not ileostomy, so must be easier. Liver and kidney function OK
Mind you, I had rapid progression since Jan. I hope COC protocol had some effect but not enough to eliminate the second line of chemo that started in April.
Good luck!

I haven't got the flarin, is that a blood thinner? Good luck with It, I hope the protocol helps with everything. Just read your bio, life is a b*tch isn't it! Annie :x:

GD62

Hi @1234annie

Statins as a class of drug cause drowsiness and dizziness, and this maybe a cause, my reason for taking atorvastatin 20mg twice daily as for two weeks I take itraconazole 200mg capsules daily with capecitabine. My reason is due to enzyme induction in the liver can be raised, but when off itraconazole I step up to simvastatin 40mg twice daily. My reason for using itraconazole is that it assists killing dormant stem cells ,reduces the hedgehog messaging for metastatic spread and reduces resistance standard chemotherapy agents.

Hope this explains, hugs :x::x::x:

Rachel
Quote from @1234annie:
Are you on the protocol @Rachel ?

Hi @1234annie
No I’m not on the protocol, I take the Doxycycline to minimise the Panitumumab rash. :x::x:

Tanguera

@1234annie Thank you. My COC doctor said Flarin was a newish addition to the protocol. It's a NSAID - anti-inflammatory. Basically it's fat soluble Ibuprofen, not water soluble like we buy anywhere for 35p. The way it was explained to me cancer cells have outer shell that is fat, so water soluble ibuprofen can't penetrate. Sorry for my lay explanation. I so often wish I had a science degree instead of my BA and ~MPhil! :x:

Ninty

Hubby is, the second month of Doxy caused some problems, he stopped it and on Menben cycle currently. Coping better. Have you called them to discuss?

1234annie
Quote from @GD62:
Hi @1234annie

Statins as a class of drug cause drowsiness and dizziness, and this maybe a cause, my reason for taking atorvastatin 20mg twice daily as for two weeks I take itraconazole 200mg capsules daily with capecitabine. My reason is due to enzyme induction in the liver can be raised, but when off itraconazole I step up to simvastatin 40mg twice daily. My reason for using itraconazole is that it assists killing dormant stem cells ,reduces the hedgehog messaging for metastatic spread and reduces resistance standard chemotherapy agents.

Hope this explains, hugs

Great, thank you for that @GD62. You've put my mind a rest! I hope it's working well for you. I seem to have got the nausea under control since splitting the statin dose in the day. :x: :x:

1234annie
Quote from @Ninty:
Hubby is, the second month of Doxy caused some problems, he stopped it and on Menben cycle currently. Coping better. Have you called them to discuss?

Yes I emailed the nurse. She wants me to report back in a few days. I trying to keep as physically active as possible. :x:

1234annie
Quote from @Tanguera:
@1234annie Thank you. My COC doctor said Flarin was a newish addition to the protocol. It's a NSAID - anti-inflammatory. Basically it's fat soluble Ibuprofen, not water soluble like we buy anywhere for 35p. The way it was explained to me cancer cells have outer shell that is fat, so water soluble ibuprofen can't penetrate. Sorry for my lay explanation. I so often wish I had a science degree instead of my BA and ~MPhil!

Yes COC told me the same, cancer cells are coated in a layer if fat. I take 300mg of asprin daily to hopefully stop/reduce spead. :x: :x:

GD62
Quote from @1234annie:
Great, thank you for that @GD62. You've put my mind a rest! I hope it's working well for you. I seem to have got the nausea under control since splitting the statin dose in the day.

lolx hugs

franksidebottom

Hadn’t heard of this prior to last couple of days, since coming across this mentioned repeatedly. Haven’t discussed this with Onc in any shape or form so don’t know whether it’s something he would advise or recommend, but what are people’s thoughts on combining this with FOLFIRI and Panitumumab? I get the notion about the use of repurposed drugs but is this known to be effective? Re: costs I’m open to paying for a consultation and sourcing prescription and / or drugs separately, I’d do whatever it takes, but are people here actually going through with a consultation or simply sourcing the same 4 / 5 drugs detailed in their protocol via their own GP or elsewhere?

1234annie

I had a consultation £400 and I paid £47 for my Drugs from Tesco pharmacy with the private script from COC. @GD62 went though a prescribing chemist, I'm sure he'll advise. This protocol is supposed to enhance chemo and slow the bugger down by reducing it's food supple (glucose & fat). The drugs are Metformin, Atorvastatin, Menbendazole & Doxyciline. All have different metabolic ways to treat cancer. It's not a cure but it's something rather than nothing. I wished I'd done it 1st time round but just had 'hope' id be a lucky one. Was not lucky, hence giving it a try this time. X x @franksidebottom

Barbara

@franksidebottom unlikely your oncologist will support this. They don’t think the data holds up. I had the consultation but for various reasons didn’t continue. Might do if all other options run out

franksidebottom

@Barbara thanks, discussed this with the Onc, as you indicated he was unwilling to support this. He did say that he’s come across the COC Protocol before and would absolutely not recommend it.

Barbara

@franksidebottom Thanks for letting me know. Mine said if he thought it would do any good he would happily prescribe it himself

Jogey

Hi Annie,

I have been taking the care oncology drugs for over a year now. I am on a watch and wait program after a radiologically complete response and so far no recurrence. I don't know if the care oncology drugs have helped this or not but I am continuing as if it ain't broke don't fix it! My NHS oncologist was fine with me going on this and including during chemo. I have suffered no side effects from the care oncology protocol.

1234annie

That's good news @Jogey! I've been on them for 3 months post op and am also hoping they help me a live longer and fuller life. I'll let you know how I get on @GD62 is also on the protocol and doing well. It's not a cure but I don't think that's what any of us are looking for. Just more time would be nice. :x: