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
Barbs COC appointment today - SHARE Metastatic ...
Barbs COC appointment today
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Barbteeth
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40 Replies
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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
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
Good luck Barb!
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 in reply to
Yes I’m going for it Sophie
Barb xx
in reply to Barbteeth
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 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
So glad to hear your news. Did he mention the name of any of these trial off label drugs? X
No he didn’t
Barb xx
That is a shame. Maybe you will let us know when you know. x
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 to GollyG
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
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.
in reply to Baseface
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 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 to Baseface
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!
🎀😍💕
Good luck Barb ♥️♥️Xxxx
Good luck Barb! Praying for you! XX
Good luck Barb!
Good luck Barb. Wishing for the best as always.
Good luck Barb ! Hope it works for you and the others who have taken this brave step . x
Good luck Barb! You are a trailblazer for us all!❤️
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
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
God bless you, Barb! Happy for you! <3
Good luck Barb. My thoughts and prayers are traveling with you and your daughter.
Hope it goes well. I have heard good things about COC. Enjoy your trip!
Thank you Barb. My family and I are now on the case. Thank you for info.
Good luck to all.
Gigi
Hi barb
Please could you say how much it costs for the drugs on the COC treatment xx
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