COC yesterday : Hi ladies Had a... - SHARE Metastatic ...

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COC yesterday

Hi ladies

Had a successful day in London yesterday...Miranda came with me to the COC clinic (pic of us before appointment..note the healthy salad!)

Anyway the doctor I saw was very knowledgeable and professional...he answered any questions I had which weren’t many as he explained everything so well...also I had researched everything myself beforehand

He promised no cure...no guarantee that this would help me and there was no pressure to proceed with the treatment which in my opinion is being honest

Anyway I’m going to start the treatment ASAP..just hope side effects are minimal

Barb xx

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Lovely photo Barb.

Glad you had a good day. Fingers crossed you see good results. How will you be monitored? Will you just note any changes at your 3 monthly (?) Scans in the usual way?

X

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I have to send regular blood results to them and then a 3 monthly check up

Barb xxx

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Hi Barb,

You and your daughter are really pretty! I can see the family resemblance right away. Miranda has your smile. I must admit I had a little nosy into what you were eating. It looks good!

I'm so pleased that you felt at ease during your appointment and that you were satisfied with everything. Some people report joint pain (down to the statin, I believe) but I didn't notice that. I did experience some nausea when I increased the metformin dose after two weeks and some loss of appetite, but not to the point of actually being sick. I just paced myself more with my meals and it soon passed. Hopefully you will not have any bad side effects. The drugs are meant to be low toxicity, which is more than can be said for some of the drugs we are offered by our oncologists.

Sophie x

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You obviously didn’t spot the side order of chips..lol!!

I probably won’t notice joint pain side effects as I live on painkillers and nausea I’ve had from the radiotherapy so nothing new there...I’ll just put up with it!!

I just want to start now!!

Barb xx

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No, I didn't, Barb! Chips are a good way to balance out a salad, I say! I like chips too, with lots of vinegar.

I'm sure you will be fine on the COC protocol.

Sophie x

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I know the feeling! I was so impatient to get the drugs and just get started. Good luck with it - we're all quite a little test group, aren't we? Let's hope it does us all some good.

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We certainly are

I’m waiting for the e-mail from the pharmacy so I can get my first drugs sent to me

Barb xx

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My drugs are coming today...how are you with side effects?.. just wondered

Barb xx

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So, I felt nauseous one afternoon after only taking them for a little while. Nothing too debilitating, walked it off and then felt fine. That's it, pretty much. Except (TMI?!) poos have changed, not surprising I suppose as they're altering metabolism. Nothing dramatic, just... different!

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Ah that’s reassuring thank you

The problem with being told of possible side effects..it’s easy to imagine you have them!!

Barb xx

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Exactly, I was braced for horrors! Good luck - exciting!

Gill x

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How long have you been on COC Sophie x

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Hi Mindy,

I started the COC protocol in April, so it's been four months now. I am doing really well with the drugs.

Sophie x

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Hi Sophie, im so pleased it's working out for you and it's so encouraging to hear. Ive read about quite a few people its helping. There just seems so many pills to take, its a wonder you can remember them all. When you add anything in, like the dog worming tablets Ive seen recently, do you run it by COC or your Onc or both? Sorry for all the questions, Im just really interested as I definitely think this is something I'll eventually do.

I'm giving it a few months to see how I get on with conventional so I've something to compare. Im doing the same with supplements. I want another scan due early September to see what if any progress there is then Im going to start adding things in. Hopefully by doing it that way Ill be able to monitor results better. Not conclusive proof obviously but just feels like it might be a bit of a guide.

Xx

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Morning Mindy,

Thanks for your well wishes! I organise my medication, supplements and apricot seeds into three containers at the end of each day and then take them at breakfast, lunchtime and again in the evening. I mention what I am taking to my COC doctor and my oncologist, but my oncologist isn't supportive, so I don't go into much detail with her.

I did things gradually. Before I implement anything new I thoroughly research it, seek medical opinions (I've spoken to my local pharmacists a few times) and then taken action.

All the best,

Sophie ❤

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Sounds like you're very organised and have it all running ship shape.

The pharmacist at my hospital was lovely when I asked about some supplements. He was really helpful and took time to explain things to me - took me into a separate consulting room - so I know in future I'll be able to speak to him again if/when I start adding things. My onc is the same as yours, when I asked her she just said speak to pharmacy - I suppose I'll mention it so she can write it in her notes but she didnt write it down last time.

Thanks for taking the time to explain and I hope it keeps working for you. Xx

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Hi Mindy,

I find that doing things this way helps me remember to take my medication, although I had a bit of a blip this morning. I was out the door just after 7:30am to get to work and forgot to take my morning supplements and pills. I only realised my mistake when I popped home just now for lunch! So I took them later than usual.

I'm glad you feel you can speak to your hospital pharmacist about supplements. I used to call mine and for the most part they were helpful, but the last time I had a question the pharmacist said she would call me back, but she never did! So now I just consult my local pharmacists at Lloyds. Like you, they take me into a private consulting room where we will sit down and double check that whatever I am interested in taking will not interact with my medication I am already on.

Enjoy the rest of your day,

Sophie x

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Sophie I’m going to copy you and organise my pills and supplements now I’ll be soon starting the COC as well

At present they’re literally chucked in a wicker basket and I’m always rummaging around for stuff and occasionally forget stuff

Barb xx

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I found it easier to pop the pills into small containers, Barb. I saved a few from my Chinese takeaways, as the condiment containers are just the right size. Not only does it save time opening boxes each time, but they are neatly organised, I am less likely to forget to take them (apart from this morning when I was in a rush) and if I am going to be going anywhere, I just take the containers with me and put them in my handbag, rather than having to take the contents of my medicine cabinet with me!

Or you can use small tupperware containers (the ones that are small enough for eggs etc). I got my husband hooked on the container system too. There were a few times he forgot to take his morning medications and I had to drive over to his work to drop them off to him. But he hasn't forgotten since. It's just my own version of a dosset box.

Sophie x

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Have you tried contacting the anticancerfund.org/ ?

They provide FREE advice on therapies, supplements and off label drugs. They provide a very thorough review of evidence if you send them an email.

I contacted them recently and was quite impressed by the information. Although I would say... The are focussed on evidence based research, so they will no pull any punches when it comes to unproven therapies. But they will inform if they may cause harm with your current protocol.

Worth a look but as I say, be prepared for them to say things you don't particularly agree with when discussing your regimen.

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I’m not going to complicate things at present..staying with my drugs from my oncologist and COC

Thanks though

Barb xx

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Oh. They don’t suggest. They will review your additions. COC stuff is fine but if you were adding other things they would tell you if evidence is there. Handy resource.

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No, I haven't contacted them. Thanks for the suggestion.

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Hi Barb,

You and your daughter are beautiful! Happy to hear that your appointment went well! I’m intrigued by this protocol and plan to learn more. Wondering if they have something similar in the states?

Sending ♥️

Jade

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They do have a COC in states but I’m sure it’s a videolin k consultation not a clinic

Barb xx

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Jade, it is a video consultation in the US.

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Lovely photo Barb...you look like sisters! This is exciting news about COC treatment! Thank you for sharing this hopeful addition to current protocols.❤️

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Yes she does look a bit like me!!

I’ll let you girls know how I get on with the treatment

Barb xx

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Hi Barb: Lovely pic! Wishing you the best on this new treatment. Looking forward to learning from your experience, ❤️🙏❤️

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Lovely mother and daughter pic !... And your hair looks fab !

Just a question on my mind , how will you know whether the results are from conventional treatment or from the protocol ? Good luck x

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I guess I won’t know but that’s not going to deter me from doing something else...very good question..I’ll be pleased to remain stable..not expecting more than that

Barb xx

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Do everthing you can that is positive for helping diminish the cancer. For me, that has always including alterative and complimentary therapies/treatments. I don't care what is making me better, just that I am gettig better.

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Beautiful photo! You look like sisters! And many prayers for you, Barb, as you move forward!

❤️❤️🙏🏻🙏🏻

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Barb what a beautiful picture. I agree with everyone else that you look like sisters so that's a definite compliment to you. Your hair looks fab and I remember you saying you have extensions....they are definitely worth the investment. I wish you nothing but wonderful results from the protocol and continued stable results once the radiation finishes killing that liver met. How long before your oncologist wants the next CT? I'll be thinking of you.

Sandra

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Thanks Sandra

I’m not sure when my next CT will be due to the interruption of the radiotherapy and cessation of Ibrance for 5 weeks...I’ll ask next appointment

Yes hair extensions do make a difference

All the best

Barb xx

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Lovely photo. You look fabulous. All the best going forward w this.

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Hi Barb,Glad your visit was positive.

What drugs other than metformin do they prescribe? How much metformin do they prescribe? Those of us that are on metformin because of diabetes take it daily. Just wondering...

Mary

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Hi

500 mg Metformin for 2 weeks then 500 mg twice a day after that

Other drugs are

Atorvastatin

mebendazole

Doxycycline

The last two meds are taken alternately for a month

Barb xx

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Thank you ,Barb.

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How do you get the drugs? Do you have to try and get your GP to prescribe or does COC prescribe them for you? X

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If your GP will prescribe them for you then the clinic doesn’t object...however most won’t do this

The drugs are bought from online pharmacy from the COC doctors prescription..I’m waiting for an e-mail from them then I pay £80 for 3 months supply which I think is reasonable considering what I spend on supplements

Barb xx

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Wow yes £80 isnt bad at all. Ah it all sounds straightforward then. I had visions of trawling the net for the meds which I wouldnt have fancied from unknown sources as could be buying anything.

Well, best of luck to you and keep us all posted. X

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You and your daughter look fab! We are learning a lot from you Barb. Please continue giving us updates on your COC protocol.

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I will do that...anything that any of us know or discover is worth sharing

The doctor I saw commented on the fact that there are so many books opinions advice supplements out there that he despairs...as nearly all the evidence has been tested on cells in Petri dishes or on mice..not humans...whereas the COC drugs have been in use on humans for years so the side effects are well known...interesting point

Barb xx

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I agree we should all share anything we hear or read about. Everything isnt right for everyone but we can all decide for ourselves what we think could work for us and look into it. Thankyou so much for sharing this part of your journey. X

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Well if it’s of help to someone else it’s worth it

Barb xx

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Thanks again Barb. I would like to visit Glasgow again before the year ends. Maybe my husband and I can fit in a trip this September. If we do go to Scotland, I will make an appointment with COC. I suppose I can buy my supplies here in the Philippines instead of purchasing them from COC as the shipping fee will cost more than the medicines.

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I’m sure the COC will send your prescription to a pharmacy near you...it’s all done via e-mail and they’ll deliver the drugs to you

They can give you a video link consultation so it’s not necessary to travel to London...I just wanted a face to face consultation as I’m happier that way

Barb xx

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Nice to see your smiling face Barb. I’m glad you found the meeting worthwhile. Please keep us posted. Good luck.

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Thanks for sharing Barb, this tipped the scale for me.I will call them today to rebook my appointment...Now that I am not in the trial it can't harm... I suppose I will treat it as I do my national lottery monthly direct debit ( well x5 in cost !)... It costs a bit, might not come up with anything but if it does it will make a massive difference! 😉.Is your daughter in the picture the one getting married?

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Go for it!!

Yes Miranda is the one getting married in September

Barb xx

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Hi excuse my ignorance what does the coc stand for .Apologies .

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Care Oncology Clinic

Barb xx

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Thank you I am thick it’s all new terminologies for me .

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You’re not thick...I didn’t know about it a few months ago!!

Barb xx

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Hi there hope all goes well , which hospital are you attending x

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The clinic is in Harley Street

Barb xx

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Fab I go to St Bartholomews for my trial x

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Beautiful ladies! You look great, Barb, nobody would know what you are going though and your hair looks fantastic.

I really hope the COC drugs make a difference. Let us know how you get on.

All the best,

Eva xx

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You and your daughter are BEAUTIFUL!!! I agree no one would guess what you are going through. Good luck with everything I hope this works for you!!

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Oh thank you for that

Yes people expect us to look like Ill walking skeletons...I must admit to hair extensions as my hair was thinning a bit round the sides ...I’m always in pain but put on a brave face...I cry when I’m on my own though

Barb xx

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You look unbelievable and both beautiful. Miranda will make a stunning bride.

We will look forward to the wedding pictures...

Your face certainly does not show your age and the pain you have been in or indeed going through.

I currently look like a hamster from the massive steroids to relieve the swelling on my brain so would not want to frighten anyone by posting a picture.

Having lost the ability to write at the moment has made me sad given I can no longer sign my name but a small price to pay if treatment works and thankfully I can hold a glass of wine and the tap system with my credit cards works well!

Once my hair grows enough to have extensions I am going for it. I do have fine hair though from the years of chemo so I need to find an expert. Hopefully I will be mistaken for my daughters sister!

I don’t know about you but thank goodness for daughters, mine are so supportive in every way but can be a little bossy out of love (and fear of losing me ) having lost their wonderful father at 60.

I am hoping to get back to my monthly trips to Majorca where my youngest and her family live, they have just spent the last month here. Flying is the only realistic route so a little nervous because of the brain swelling but Heathrow is just down the road so when I can, it works well.

Reading all the lovely messages today wishing you each other well was very uplifting

Looking forward to Swan Upping in Marlow next week...17 th This is where all this years new baby cygnets are ringed as they belong to the Queen. it's quite a pageant with the royal boats and regalia and they Queens swan keeper...plus an excuse to quaff a few bubbles.

Having had a few poor years with very few babies surviving , this year our magnificent parents had and have raised 8.

Gigi

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Hi Gigi

Thank you for the compliment on my appearance..I’m a very good actress and can put on the smiles when needed...I do assure you it’s s facade as I’m miserable sometimes and still feeling the effects of my radiotherapy..I push myself too far sometimes...went for a short ride yesterday and when I got back I could hardly lift my saddle off my horse...had to sit down and I was in pain...wonder if it’s worth it

Today I’m resting and looking forward to the Nadal vs Federer match...also my COC drugs will arrive today so I can start those...hope I’m like Sophie and have few side effects

Definitely get some hair extensions...my hair is very fine but they haven’t damaged it at all and it’s so much easier to style and keep nice

I’ve never heard of the Swan Upping in Marlow...sounds amazing...I’m very fond of birds and it must be quite a spectacle and the champers is a bonus!!!

I agree that having daughters is wonderful...mine really care...I see my other one a fair bit as she lives in a village not far from me and we ride out a lot...she’s bridesmaid for Miranda and they’re all excited about it...had the hen party a few weeks ago...I wasn’t invited thank God!!!

Will you be able to come off the steroids at some point?... I would hate to have to take those but would do so if it helped....what a predicament we are in...just hate it but what can we do?!

I wish you all the best

Barb xx

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Hi Barb

I am not alone in saying you frequently light up this site.

I have really noticed a difference in your posts as time goes on and perhaps your anti depressants kicked in.

Like me your MBC came back after so many years of assuming, well I did, that we had paid our due.

Working through pain as you do to indulge your love...nay need of your horsey fix, is no walk in the park and takes a special strength.

I sadly have always been frightened of horses and yet my sister has had and ridden them all her life and without her fix every other day is miserable.

I stick to walking the dog which I do enjoy and hope is doing my sclerotic bone cancer some good. I live near the river and find that quite a healing pleasure. Particularly if there’s lunch at the pub on offer at the end!

I am going to see a hair extension company tomorrow. I am thrilled to have tuffs growing back as we thought the stereotactic radiotherapy would mean it was gone for ever.

Not long to go to the wedding and it will be so important for your daughter seeing you look so amazing on her big day.

Gigi

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Hi Gigi

Thanks for your lovely post....I ditched the antidepressants after 7 weeks....they made me feel worse

You will love your hair extensions...believe me they are addictive...I would hate to have to go back to my scrappy hair again

How lovely to live near a river and be able to walk your dog...aren’t animals the best therapy!!

I would love to have my horses at home but that’s just a dream...couldn’t afford property with land in UK ...very expensive so I have to drive to the stables to see my boys but it’s only 4 miles away....you should see the state of my car...full of horsey stuff...my husband refuses to get in it as he reckons it’s too dirty and smells...lol

All the best to you

Barb xx

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I will try and take pictures if they do use our jetty. It is fascinating to watch.

Sadly, they have taken my driving license off me because of brain mets. So dirty dog car no longer a problem. Really such a pain having to often rely on others although local taxi service is quite good. I have told very few people and wonder if they think I have got rid of my car due to DD!

Have a good day.

Gigi

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Gorgeous girls!!! Thanks for sharing. Can’t wait to hear about your new protocol working. Best of luck with it!

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Beautiful pic of you two! So happy that you liked the doctor and that he was honest and smart, as well as thorough! I pray this brings about great results for you! God bless you and heal us all in Jesus name, amen! <3 xo

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Oh thank you

You’re always so sweet and kind

Barb xx

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Barb,

You both are so beautiful. So nice Miranda went with you! Good girl you had a salad.

Very happy you had a good experience with the doctor

Sounds like you were very impressed.

I wish you success with the COC protocol. It makes sense to me. We know there are no guarantees with anything we take but you are giving yourself another avenue.

Love,

Marianne

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Oh thanks Marianne for supporting my decision

By the way if you look closely at that photo there is a side of chips on the table!!!.. not as virtuous as you thought.. lol

Barb XX

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Lol. You are allowed chips! It balances the good of the salad.

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That’s what I thought!

Barb xx

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You are both stunning. I'm all for the new avenues. Your posts are so helpful and inspiring. Keep smiling- you have a lot to be smiling about :)

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Oh thank you

I’m afraid I have my non smiling days like all of us do

I was in a good mood though yesterday...enjoying Miranda’s company...she’s good fun ...and feeling like I was actually doing something constructive in the cancer fight

Barb xx

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Pretty photo! Glad it went well. Prayers for you.

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What kind of treatment r u on ? X

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Do you mean my conventional treatment?.. Ibrance letrazole and denosumab

Barb XX

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Thank you I am a bit confused what’s COC ? I thought it was a cancer treatment :) xxx

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It’s the name of the London clinic.,they prescribe off label drugs for cancer

Barb xx

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B

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Barb

First you look so pretty. I am glad your daughter went with you. She is beautiful. Am glad you were comfortable with it all and best of luck with it going forward.

♥️♥️♥️Frances

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Thanks Frances

I just feel better for being proactive for a change

Barb XX

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I am excited for you! Please keep us in the loop. I’m meeting with my oncologist tomorrow to discuss the How to Starve Cancer protocol.

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Hey good for you

Good luck

Barb xx

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What is involved with that protocol?

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Sorry to butt in, but it's probably to do with Jane McClelland's protocol. She's the author of How to Starve Cancer. She advocates the use of supplements, off-label drugs and conventional treatments (such as low dose chemotherapy) to cure cancer. She survived metastatic cancer.

Sophie x

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Thank you so much.

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You're welcome!

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The above was to Barb. Sorry went screwy the pist

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Beautiful picture of you and your daughter. Looks like a great day! The best to you going forward with this treatment! xo

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Thank you so much

Barb xx

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You and your daughter are both beautiful. It is wonderful that you can spend time together.

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Well I don’t see a lot of her as she’s in London and leads a busy life...it’s no excuse really as it’s only a 2 hour journey by train but you know how it is..Time flies

Barb xx

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And, stupid question, but how do you put photos on this site?

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Just underneath the box where you write your post there’s an ‘add photo ‘ box..click on it then you can go to your photo library and choose...

Barb xx

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Doesn’t seem to be an option on my Apple phone I’ll check later on my computer. The only thing that’s underneath is something it’s his privacy tips

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It’s under privacy tips...can’t see that having a different phone makes a difference...but I’m crap with technology...mines an I phone

Barb xx

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Sometimes it shows a little paper clip ?

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Just wondering what COC means x

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Care Oncology Clinic

Barb xc

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Thanks. Is that a private clinic?

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Yes it’s in Harley street

Barb xx

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What a lovely picture, two beautiful girls. Glad it was a positive experience at the clinic. Fayx

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Thanks Fay

I started the drugs today

Anything’s worth a try imo

Barb xx

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Hi Barb

You look wonderful in the picture with your daughter!!

Good luck with the new treatment! Although hard at times keep the positive outlook !!!

May I ask what the new treatment is? I can find out about it here in Canada.

Susie

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Scroll through the posts it’s all in there

Barb xx

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Looking great! Which treatment are you starting?

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The COC protocol includes the use of the following off-label drugs:

Metformin

Mebendazole

Doxycycline

Atorvastatin

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Hi Barb

Just sending you all my best wishes for you starting on your tablets. I really hope they help, and would be very interested in hearing your progress.

😃

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Beautiful ladies! Going to look up and see what the COC protocol is you all have me curious.

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