BRAF + ... What treatment were you offered

  • 7 replies
  • 59 subscribers
  • 252 views

Hi,

I have had malignant melanoma diagnosis, excision and opted for WLE and SNB. 2 lymph nodes removed and melanoma cells found in these.

CT scan came back clear.

Have been trying to read up about potential treatment options ... can anyone provide any feedback?

Tia

  • Hi, my diagnosis was the same. I am braf +, so am on dabrafenib and trametinib which are a targeted therapy. I have been on this treatment for 2 years and cancer free at present. I will go on to immunotherapy if it stops working. I am stage 3c. If you are braf - or wildtype, immunotherapy is the usual option as targeted therapy doesn't work.

  • Hiya,

    Thanks for that.

    I've just read your bio details and am really thankful for the detail you have posted.

    I'm seeing my oncologist for the first time (for the melanoma) on Monday so hopefully will get 'the plan'. I'm nervous tbh as I was also diagnosed with breast cancer and although that hadn't spread to my lymph nodes I had surgery and radiotherapy and they would like me to start with hormone treatment and I've no idea if targeted therapy and hormone treatment will be possible / a bloody nightmare to cope with.

    Can I ask if you are still working through the treatment? 

    Really appreciate you responding.

  • I was diagnosed as stage 3a, BRAF + last year. I had different information from the plastics consultant who gave me the result and that of the oncologist I saw a few months later. Due to the poor communication between hospitals and within my own hospital, I am not on any treatment and remain observation only.

  • Thanks for reply. I have same stage and gene mutation. 

    I have been told Targeted therapy best, but needs to be commenced before 12 weeks post WLE due to funding requirements.  I have a slight complication due to some impending dental work so crossing everything that I can go forward.

  • All the studies on its effectiveness have been done when the treatment has started within 12 weeks of the biopsy. It was about 8 months before I found out, purely by accident, I was BRAF +ve.

  • Its such a pivotal.part of treatment- I really had to chase and chase the pathology.  And even then the oncology team didn't have the response from the other hospital.  Beggars belief. 

  • My oncologist was told by the hospital that tested the sample, that it had been lost. This then changed to there being insufficient DNA in the sample to test. My oncologist pushed for them to test it again and she received the result in July. I only found out in October during a routine dermatology appointment and have just been told that targeted treatment is not an option now.