The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

Braftovi/Mektovi

Forums Cutaneous Melanoma Community Braftovi/Mektovi

  • Post
    mrhubahuba
    Participant
      Hi everyone, this is my first post since I got diagnosed with stage 3c melanoma in March 2009 although I have emailed Celeste aka bubbles a couple of times while is an inspiration to us all here.
      Anyway diagnosed 3/19, mole 8 mm removed with surrounding skin and 2 out of 3 sentinel lymph nodes removed anddiagnosed with Melanoma. I immediately went to NYU under the care of Dr. Jeffrey Weber who is an amazing doctor with great staff. He put me on monthly doses of opdivo and I had 2 scans which were clear, last one 7/29/2019. About 3 weeks ago I started feeling really severe pain which I thought was gallbladder and was checked into local hospital. Turns out melanoma spread to lungs and liver with over 100 lesions on liver, biggest tumor being 1 1/2″ long and golf ball tumor on my back where original melanoma was.. Dr Weber immediately put me on IPI/opdivo combo and I was tested for BRAF Gene. Last week braf came back positive and next day (5 days ago) I was put on braftovi/Mektovi combo. Yesterday morning my golf ball size tumor was still on my back but woke up today and it was gone and my liver pain (which I was taking morphine for) was gone.
      I don’t know what this means but it can’t be bad and I haven’t taken morphine since last night. I guess my next LDH blood test will tell,my last LDH level was over 3000 which I took last week.
      I am not really a forum type but felt the need to share something positive with the group. The posts here have been very inspiring and educational to me and I thank you all and wish you all luck!

      Cheers
      John

    Viewing 4 reply threads
    • Replies
        Bubbles
        Participant
          Welcome to the board, John!! Targeted therapy can indeed be miraculous and it sounds as though your tumors are definitely responding!! That is wonderful!! Keep us posted! Celeste
          sks2019
          Participant
            That’s great. Wish you contiued recovery and good health. Thanks for bringing hope back !
            chrispl1974
            Participant
              Terrific news. I am very happy for you. Please keep us posted on your road to recovery .

              Take care

              Chris

              Summer S.
              Participant
                Hello John,

                This is fantastic news!

                My mom just started on Braf/Mek today, so we are in this together! And your post really really made my day

                I wish you more miraculous results and full sustainable recovery soon.

                Thank you for sharing your story
                Love,
                S

                sandyd77
                Participant
                  Hello, John

                  It is great to hear of your current results. My husband has Stage 4 and has been receiving monthly Nivo infusions since June. He has two tumors which recurred on his back, and several small mets in lungs. Most recent scan shows minimal development of anything new but I was hoping we would see some reductions soon. He has been tested and is BRAF positive and his doctor said if we don’t get the results we want in another month or two, we may go to targeted therapy which you recently did. Could you please let me know how the BRAF/Mek combo was regarding side effects? He has tolerated the Opdivo pretty well other than fatigue and some muscle pain.

                  Thanks for any information and I hope and pray you continue to do well!

                  Best,

                  Sandy

                    mrhubahuba
                    Participant
                      Well I have only been on the Braf/Mek combo a week and since I recently got a opdivo/ipi/ infusion my doctor put me on 3 braftovi pills daily instead of 6 which is the norm because he was afraid of toxicity since infusion was so recent. I have not had any side effects except runny nose which I can live with. Prior to this when I was 3c, I had 6 months of opdivo which caused vitiligo, both adrenal and thyroid glands shut down and psoriasis. I than switched to one dose of IPI after tumors were found in liver and lungs and than 2 weeks later the braf drugs. My doctor took me off the opdivo/ipi combo because my tumor load was severe ( over 100 lesions) and my LDH levels were over 3000.I am 55 and relatively healthy outside of this nonsense so I have always thought the ends justify the means (side effects) and have tried to power through them. Unfortunately for some that’s not possible due to age or severity of side effects, etc.
                      Good luck to your husband and I will keep you posted.
                      I don’t want to get too cocky after only one week but I literally feel almost 100% whereas 2 weeks ago I felt like I was at death’s door with unbearable liver pain, borderline hospice. What a difference a week makes.

                      Cheers
                      John

                Viewing 4 reply threads
                • You must be logged in to reply to this topic.
                About the MRF Patient Forum

                The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

                The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.