Hi Minky4

I'm not a nurse but I wanted to reply to your question whilst you wait for the nurses to come back tomorrow.

Targeted does not work on BRAF negative patients, therefore I think there has been an error somewhere along the line. I would contact the cancer support nurse (if you have been given their details) or the consultant's secretary & ask to speak to the consultant. Was it the dermatologist, Plastic Surgeon or oncologist that you had your appointment with? Did you query the letter against what they were telling you? It really needs sorting out before the plans for your treatment go any further & I'm sorry that there appears to be a breakdown in communication somewhere down the line. I've sent you a friend request in case you want to chat by private message.

Good luck and please let us know how you get on,

Angie (Stage 3 melanoma patient since 2009)

Hi Angie,

Thank you so much for your clarification, that’s exactly what I thought. It was at my first oncology appointment with a registrar I think. I didn’t have my letter with me but I go back on Tuesday and I’ll definitely be taking it. Tomorrow I am going to speak to the MacMillan nurse attached to the surgeon to double check that I’m definitely BRAF negative as my letter stated so I can be sure. I’m also going to take a the literature I have that says the same thing. I really wasn’t prepared for his decision on Friday so my mind definitely wasn’t at its best. Thank you so much.

Tracy, ( Stage 3 melanoma patient since May/June this year)

I'm glad you are going back on Tuesday & that you are contacting your nurse tomorrow. Either the wrong BRAF results has been put on the letter or the oncologist has been given the wrong results. Good luck x

Thank you so much x

My partner's braf positive (it took a long time to actually have this communicated from plastic surgery to oncology) but chose to go with pembrolizumab first to give the option of targeted treatment later. His oncologist laid out his options and didn't make the choice for him but he's stage 4 so it might make the difference in how oncology handled him?

I'm sorry you have this horrid disease too. I hope it gets under control quickly x

Thank you so much, hope your partner gets on well. Sounds like he had a better experience with his oncologist x

Hi Minky4 and thank you for posting,

I am sorry to learn of your situation,

Depending on the stage of the melanoma both targeted therapies and immunotherapies may be used for patients with the Braf mutation (BRAF positive). Those who do not have the BRAF mutation (BRAF negative) tend to be treated with immunotherapies. 

It is good to see that you have an appointment to go back to the team to clarify things for you.

I hope things become more clear for you soon. Please feel free to get back to us if you need any more information or support.  You may find it helpful to talk things through with one of the nurses on our helpline.  The number to call is Freephone 0808 800 4040 and the lines are open from 9am till 5pm Monday to Friday.

Take care,

Jemma

Hi Jemma,

thank you so much for getting back to me. I actually spent the day on the phone today clarifying everything.It turns out that I have a positive BRAF mutation. The clinic letter sent to me was an error and should have contained an amendment. I feel a little calmer and clearer now to go back tomorrow.

Kind regards,

Tracy 

I'm glad it was clarified. At least it was just a letter out and not a mistake in your notes. I hope your treatment leaves you cancer free x