Advanced Melanoma with BRAF gene and targeted therapy

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Hello, I have recently been diagnosed with advanced melanoma.  It all started about 4 years ago with a mole on my chest. It turned out to be a malignant melanoma which was removed.  I then had a WLE and some lymph nodes removed.  All biopsies were clear so I really was not expecting the melanoma to spread.  However, it has and to many many places.  Biopsy showed I had the BRAF gene so I have been put on targeted therapy - BRAFTOVI and MEKTOVI.  I have been totally amazed at how quickly they seem to be working.  I had a very large swelling under my chin which was extremely painful.  It had noticeably reduced in size after only 2 days and now 7 weeks later it is almost gone and I have no pain. Swollen lymph nodes are also more or less gone so I hope this means that the cancers elsewhere are shrinking as well.  I will not know that for sure until I have my next MRI scan.  I would be very interested to hear from anyone who is further along the BRAFTOVI/MEKTOVI treatment route.  Thank you.

  • Hi I had a large tumour burden after 7 years clear and was given similar tablets. These drastically reduced my tumours and some disappeared. After 7 months one started to grow and I was put on ipi and Nivolumab. I then went onto Nivolumab every 4 weeks. I am now clear of cancer and my treatment has stopped. I am writing this to show you how amazing these drugs are when they work. Like most people I have had my ups and downs, especially when my scan results are due. I will be carefully monitored every 3 months initially. Five years ago I was so ill I didn’t expect to live. The consultant was going to stop Nivolumab two years ago after a Pet scan that initially they thought was completely clear but after a team meeting decided they were unsure about an area near my kidney so decided to continue. The latest scan showed something on my thyroid but after an ultra sound it was just a cyst so my immunotherapy has finished. 

    I am delighted but find it hard as I have been on treatment for so long it felt reassuring when I was on it.  The consultant said it is better to stop now and it was there if it did return in the future.  I asked about diet and was told it was the immunotherapy that killed the cancer not my diet. I know that but still feel it is important to eat well with lots of fruit and veg and get regular exercise. In my case exercise is walking . I hope this helps you and I wish you well .

    Lgrgdg90
  • Thank you so much for your response.  That is fantastic news that you are now clear of cancer and i wish you all the best.

  • Your story sounds very similar to my husband’s.  He has been taking Dabrafenib and Tremetenib for 2 weeks as he has Stage 4 BRAF positive melanoma.  He has ascetis (swollen stomach linings) and swelling in various other places, however it does look like it is starting to reduce.  We are seeing the oncologist tomorrow and will get bloods done which I think will show if the drugs are having any effect.  Amazing to hear you are have such positive results with this treatment!  It gives me hope,

  • I do hope your husband continues to respond positively to the medication and that you had good results at your consultation yesterday.  I have now been taking these drugs for 8 weeks. The initial digestive problems seem to have more or less gone and so far, fingers crossed, no other side effects. I actually feel better than I have for months so just intend to get on with my life and not think about cancer.