MRF-Logo2019-Horizontal-RGB
Initial bad news followed by a sea of good news
REGISTER
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.

Initial bad news followed by a sea of good news

› Forums › Cutaneous Melanoma Community › Initial bad news followed by a sea of good news

  • Post
    • March 13, 2015 at 5:48 pm
    bonusfries
    Participant

      My initial diagnosis was July '13. Had a very high risk initial tumor (11mm depth, and raised from the skin too). Fortunately the WLE, SLNB and every PET scan (last one Sep 14) since then has been NED.

      That was until vision problems led to an MRI 3 weeks ago. 2 brain mets, different lobes, with the visual problems being driven by one of them filling with fluid. The larger had swelled to about ping pong ball size, with the second being 1 cm. Minus the fluid they were both probably equal in size.

      The subocciptal craniotomy went extremely well. Surgery on Tuesday and I'm back home Friday night at a pizza party for my son. A full body CT scan (CT only not PET) only showed that a subcutaneous node might be forming near my original site (lower abdomen), otherwise NED.

      The next Friday after discharge, I had SRT performed on the second area – front right lobe. I am a math / science guy and was completely fascinated by this procedure and enjoyed every minute of it.

      My lab results from the removed brain met came back BRAF positive. Our plan of attack is to start on the BRAF + MEK combo in the next 2 weeks.

      So aside from the initial bad news in the ER that my melanoma had spread, this just seems like wave after wave of good news in terms of attacking it in the short term with quite effective methods. Long term who knows, and I'm a "glass half full" kind of guy so I'm not even contemplating my future. I feel like I have as good odds as I'm going to get in terms of beating it back right now, and hopefully keeping it back. I hope everyone dealing with this has the same encouraging news if you ever hit stage 4 also.

       

      Stay strong

      Jeff

       

    Viewing 8 reply threads
    • Replies
        • March 16, 2015 at 11:12 am
        Jubes
        Participant

          Hope the combo knocks it back and you go on or 1 and finish it off!! 

            • March 16, 2015 at 11:12 am
            Jubes
            Participant

              I meant pd 1!

              • March 16, 2015 at 11:12 am
              Jubes
              Participant

                I meant pd 1!

                • March 16, 2015 at 11:12 am
                Jubes
                Participant

                  I meant pd 1!

                • March 16, 2015 at 11:12 am
                Jubes
                Participant

                  Hope the combo knocks it back and you go on or 1 and finish it off!! 

                  • March 16, 2015 at 11:12 am
                  Jubes
                  Participant

                    Hope the combo knocks it back and you go on or 1 and finish it off!! 

                    • March 17, 2015 at 6:02 pm
                    JerryfromFauq
                    Participant

                      Jeff, as a number/scieence guy, you know what it means when they say that 50% of the people treated with anti-BRAF alone haave it stop working within one year.  (Hmmm, what about the member of the other 50%?)

                       

                       

                       Of course any delay in growth gets us down the learning path.

                        • March 20, 2015 at 11:04 am
                        bonusfries
                        Participant

                          I completely get that the inhibitors come with a "your results may vary" caveat, but I look at this as 'one more weapon in the arsenal' that I can use against melanoma. We will get what we get out of these drugs, and then move on once they stop working.

                          • March 20, 2015 at 11:04 am
                          bonusfries
                          Participant

                            I completely get that the inhibitors come with a "your results may vary" caveat, but I look at this as 'one more weapon in the arsenal' that I can use against melanoma. We will get what we get out of these drugs, and then move on once they stop working.

                            • March 20, 2015 at 11:04 am
                            bonusfries
                            Participant

                              I completely get that the inhibitors come with a "your results may vary" caveat, but I look at this as 'one more weapon in the arsenal' that I can use against melanoma. We will get what we get out of these drugs, and then move on once they stop working.

                            • March 17, 2015 at 6:02 pm
                            JerryfromFauq
                            Participant

                              Jeff, as a number/scieence guy, you know what it means when they say that 50% of the people treated with anti-BRAF alone haave it stop working within one year.  (Hmmm, what about the member of the other 50%?)

                               

                               

                               Of course any delay in growth gets us down the learning path.

                              • March 17, 2015 at 6:02 pm
                              JerryfromFauq
                              Participant

                                Jeff, as a number/scieence guy, you know what it means when they say that 50% of the people treated with anti-BRAF alone haave it stop working within one year.  (Hmmm, what about the member of the other 50%?)

                                 

                                 

                                 Of course any delay in growth gets us down the learning path.

                                • March 18, 2015 at 10:04 am
                                LuckyMan51
                                Participant

                                  Jeff,

                                  Thanks for the post. Killing this disease is a full time job and it great to see results after thoughtful proactive intervention. All the best on your road back to NED forever!   

                                  • March 18, 2015 at 10:04 am
                                  LuckyMan51
                                  Participant

                                    Jeff,

                                    Thanks for the post. Killing this disease is a full time job and it great to see results after thoughtful proactive intervention. All the best on your road back to NED forever!   

                                    • March 18, 2015 at 10:04 am
                                    LuckyMan51
                                    Participant

                                      Jeff,

                                      Thanks for the post. Killing this disease is a full time job and it great to see results after thoughtful proactive intervention. All the best on your road back to NED forever!   

                                  Viewing 8 reply threads

                                  Tagged: 

                                  • 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.