Barbs COC appointment today - SHARE Metastatic ...

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Barbs COC appointment today

Barbteeth profile image
40 Replies

Hi ladies

Well I’m off to get the train to London shortly...my appointment is at 3pm...I hope I get some answers and a treatment plan from them

I’ll let you know how I get on

Barb xx

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Barbteeth profile image
Barbteeth
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40 Replies
Teddielottie profile image
Teddielottie

Have a good trip and enjoy the time with your daughter ! I hope you get some answers and if you decide to proceed , I wish you well on it x

Mindysooty profile image
Mindysooty

Good luck. I hope you find what youre looking for. Im def interested in this. Just going to do a few cycles of conventional to see how I do and then possibly look into this. Keep us posted. Take care. X

Stage4Gir profile image
Stage4Gir

Good luck Barb!

Wintervt profile image
Wintervt

Thinking of you! Sending ♥️

Hi Barb,

I wish you well with your COC appointment. I hope you are satisfied with what you hear. I'm happy with the COC protocol and plan to continue. We all have to make up our own minds about treatment.

Sophie ❤

Barbteeth profile image
Barbteeth in reply to

Yes I’m going for it Sophie

Barb xx

in reply toBarbteeth

Good for you, Barb! I got my second delivery today. It's so handy getting the prescription delivered right to your doorstep. Once the order goes through it's normally delivered the next day. Let me know how you get on. When I upped the dosage of the metformin I experienced a little bit of nausea and loss of appetite, but it passed.

Sophie x

Barbteeth profile image
Barbteeth in reply to

I felt that the doctor I saw knew what he was talking about..the whole set up was very professional

He also said that the drugs may not work on everyone but he works at the Royal Marsdon in the research department and they’re conducting a major trial on breast cancers and use of off label drugs and he seems confident...at least he didn’t promise unrealistic outcomes but expects me to do well

Anyway I have nothing to lose so I’m giving it a go

Barb xx

BangorBelle profile image
BangorBelle in reply toBarbteeth

So glad to hear your news. Did he mention the name of any of these trial off label drugs? X

Barbteeth profile image
Barbteeth in reply toBangorBelle

No he didn’t

Barb xx

BangorBelle56 profile image
BangorBelle56 in reply toBarbteeth

That is a shame. Maybe you will let us know when you know. x

Barbteeth profile image
Barbteeth in reply toBangorBelle56

I will do that

Barb xx

in reply toBarbteeth

Morning Barb,

I'm so glad everything went well for you down in London and that you were happy with the consultation. Let me know how you get on with the medication.

Sophie ❤

Barbteeth profile image
Barbteeth in reply to

I certainly will

Barb xx

GollyG profile image
GollyG in reply to

Hi Sophie,

Did you go back to the clinic before getting another prescription? Or maybe you just send them latest blood results? Realise I didn't ask all the right questions before I started! Feel great on all the drugs though! Gill x

in reply toGollyG

Hi Gill,

I had a follow-up appointment with Dr Mazibuko last Friday and then I received my prescription yesterday afternoon. My next CT scan isn't until 26th July and my blood test will be on 2nd August, so after I have received those results I will email them over to the COC clinic. They went by my May results for my last consultation, but I still want to keep them up to speed. A letter was sent to my oncologist asking if she would email results over, but she is not interested in doing so. I'm glad you are doing well on their protocol! I am too.

Sophie x

Barbteeth profile image
Barbteeth in reply toGollyG

Glad to hear that

Barb xx

GollyG profile image
GollyG in reply toBarbteeth

Good luck with it, I don't want to tempt fate but feel stronger and healthier since I started. Gill x

Baseface profile image
Baseface in reply to

It sounds like the same Dr we spoke to. We found him. Very knowledgable and candid. Although he did look a lot like Matt Berry which I found hard to get out of my head.

Pleased you felt confident to begin the protocol. My wife has been on it for a month now. Been taking statin and Metformin for a month prior to appointment.

No real problems apart from bloating which seems to have calmed down.

Good luck with it.

Barbteeth profile image
Barbteeth in reply toBaseface

Thank you

Barb xx

in reply toBaseface

I'm seeing Dr Mazibuko. I am very pleased with him. He used to be an NHS doctor before he went into private practice. I find him very pleasant and knowledgeable too.

I'm glad your wife is doing well with them.

Sophie

Baseface profile image
Baseface in reply to

Thanks, yes she is really improved from where we were 2 months ago. The Onc has stepped her down to another consultant as she is happy with her reaction to treatment. We’re very pleased with the outcome.

in reply toBaseface

That is very good news. You must both be really pleased. We all want to respond well to treatment and when we do it is such a relief to us and to our families!

Maludagui profile image
Maludagui

🎀😍💕

Francesca10 profile image
Francesca10

Good luck Barb ♥️♥️Xxxx

RLMB profile image
RLMB

Good luck Barb! Praying for you! XX

mariootsi profile image
mariootsi

Good luck Barb!

nstonerocks profile image
nstonerocks

Good luck Barb. Wishing for the best as always.

Teddielottie profile image
Teddielottie

Good luck Barb ! Hope it works for you and the others who have taken this brave step . x

Tam-56 profile image
Tam-56

Good luck Barb! You are a trailblazer for us all!❤️

MyMiracle13 profile image
MyMiracle13

Hi Barb. I am very interested to know the steps you took and what medical records you needed to send COC before your appointment. I live all the way in the Philippines and I have 2 oncologists. One in the Philippines and one in Malaysia. I need the oncologist in Malaysia because he prescribes the Ibrance for me and I buy it in Malaysia. We don’t have Ibrance yet in the Philippines. I am very interested in the COC protocol though and am willing to go to London for an appointment. My 2 children live in Glasgow so it would give me a chance to visit them😄

Maria

Barbteeth profile image
Barbteeth in reply toMyMiracle13

Nothing ventured..nothing gained

I just feel like I should be doing something else...if it fails then I’ve tried

You could go to Glasgow then take a flight to London or vice versa

Barb xx

SeattleMom profile image
SeattleMom

Good luck and prayers to you, Barb!!

❤️❤️🙏🏻🙏🏻

Godbeforme profile image
Godbeforme

God bless you, Barb! Happy for you! <3

JanaLynn profile image
JanaLynn

Good luck Barb. My thoughts and prayers are traveling with you and your daughter.

Mimigram profile image
Mimigram

Hope it goes well. I have heard good things about COC. Enjoy your trip!

Sandig1948 profile image
Sandig1948

Thank you Barb. My family and I are now on the case. Thank you for info.

Good luck to all.

Gigi

Nannymop profile image
Nannymop

Hi barb

Please could you say how much it costs for the drugs on the COC treatment xx

Barbteeth profile image
Barbteeth in reply toNannymop

Hi

£80 for 3 months supply

Barb xx

Nannymop profile image
Nannymop in reply toBarbteeth

Thank you please let us know how you get on with the treatment . Would like to know more

Take care

Mandy x

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