Following the trend

[Marieleb]

So here we are... I have rebooked my first COC appointment for 23rd July ( cancelled the first one as I waited to hear if I made it to the trial) ... Got the newbie , Dr Kuhan, who only started last month! Let's see how that go. Having expanded their empire they are obviously now quite desperate for business. I sent email Friday, got a response within 30 mn with appointment this Tuesday. I had to turn it down because I want final go ahead from my medical team but I was quite shocked! Anyway will keep you posted and might suggest to them they start giving us discount as part of a recommend a friend scheme 🤣🤣

[Barbteeth]

Hi there

I saw him last week...he was very professional...he works at the Royal Marsden in London and another research centre (name escapes me)

The consultant I was supposed to see was called away due to a family problem and he saw me instead of my appointment having to be cancelled

I don’t really think it matters a great deal which doctor you see as they’re all following the same protocol...he had read all my notes and was therefore well informed of my current treatments and cancer status

So don’t worry on that score...I’ll be interested in your opinion though

Barb xx

[MyMiracle13 in reply to Barbteeth]

Hi Barb. I sent an email to COC London asking them to let me know what they need from me prior to my booking an appointment in September. What notes did you have to submit? Everything from when you were first diagnosed with BC or only when you were diagnosed with MBC? Thanks for all your help.

Maria

[Marieleb in reply to MyMiracle13]

Hi Maria

They ask for your latest blood test , consultant letter, pet/ CT scan and summary for treatments to date... In the email they also asked for biopsy results but I did not send this and they have not asked for it. Will send you you the exact wording shortly

[MyMiracle13 in reply to Marieleb]

Thanks very much for the response. The consultant’s letter is the same as the clinic letter summarizing diagnosis and treatment?

Maria

[Marieleb in reply to MyMiracle13]

yes I just sent them my last consultant letter as it covered everything

[Marieleb in reply to MyMiracle13]

In case you have not previously sent us the following: latest blood test results (to include full blood count, liver and kidney function), radiologist reports on scans, original biopsy (histology) report, recent clinic letter summarising diagnosis and treatment, and a list of current medication that you are taking, please bring these with you to your consultation.

[Barbteeth in reply to MyMiracle13]

I sent the notes from my mbc diagnosis last year

My initial diagnosis was 24 years ago so irrelevant

Barb xx

[MyMiracle13 in reply to Barbteeth]

Thanks barb. Wish you well on this protocol.

[Hidden]

Hi Marie,

I wish you well with your COC consultation. I have been on their protocol since April and I am doing well. I just had my three-month follow-up consultation, which went well. My doctor is pleased with how I am doing, so I shall stick with things for the time being. He is professional, caring, asks me questions and listens carefully to all I have to say, so I am very pleased with him. After the consultation ( assuming you plan to move forward) you will then have the prescription filled and delivered to you very quickly. I normally get mine the next day.

All the best,

Sophie

[Albert23]

I know I sound stupid but what is COC I have just started treatment and am lost with what happens other than my own treatment. Also can anyone tell me the longest they have heard of anyone being on Ibrance? Thanks xx

[Marieleb]

You most definitely do not sound stupid. This is all a minefield! I can across the Care Oncology Clinic when reading the How to starve cancer book( the only thing I took away from the book really but others found it more helpful).

A few of us here have either started or are about to start their protocol made of a series of 4 medecines used in conjunction with your existing treatment.careoncologyclinic.com/.

There are a few thread on there sharing experiences if you search " COC " or " care oncology unit"

Original consultation is £400 and the £200 every 3 months for medicines. If you are interested I would strongly suggest clearing with your medical team before you make any decision/ part with any money.

I am not convinced it will help but I am fairly convinced it can't harm and being sadly in my second treatment already only 12 months after diagnosis I am keen to go that extra mile.

With regards to Ibrance there was a recent thread asking the same question with people referring to 3/ 4 years...

This site is a great source of advice, support and experience sharing. A safe space with lovely members. It has helped me in very difficult time. Sorry to had to join us but very warm welcome from us all... And remember you can ask and share anything this is why this place is so therapeutic!

Take care

[mariootsi]

What a good idea! I hope you have a good experience at your appointment.

[Kimr2081]

Is the COC only in the UK? How would someone in the US see them short of traveling to the UK?

[Marieleb in reply to Kimr2081]

Hi Kim , No they also have something in the us .I think they do Skype consultations.

[Kimr2081 in reply to Marieleb]

Thanks. I'll check out their website and see.

[Hidden in reply to Kimr2081]

Hi Kim,

They offer video consultations in the UK, which is really handy, and the American COC clinic does too. I was stressing about getting down to London for my first appointment in April when they told me they could see me via video consultation. So that's how I see my doctor.

Sophie ❤

[Kimr2081 in reply to Hidden]

Did your oncologist have any issues with you seeing them and incorporating their suggestions?

[Hidden in reply to Kimr2081]

No, not really. The last time I saw my oncologist she had in her hand a letter from the COC clinic. She said the protocol "could work" but she stopped short of actually encouraging me and she would not prescribe the drugs, so I have those prescribed privately and pay for them (a new concept for me!) So she knows what I am doing. Her main issue is that I stick with conventional treatment. When I initially mentioned the idea of trying alternative treatment she was alarmed that I was going to give up on conventional treatment, but I told her I am using an interactive approach.

Sophie ❤

[Marieleb in reply to Kimr2081]

I will double check with my medical team again tomorrow. The first Dr I mentioned it to said " just check with medicine team" ( so I did and they said no negative interaction with conventional treatment). The second one was supportive but caveated by the fact she was too junior to have any weight so hopefully 3rd time lucky tomorrow! I