MRF-Logo2019-Horizontal-RGB
Very bad news, looking for advice, support as I’m terrified!!
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.

Very bad news, looking for advice, support as I’m terrified!!

› Forums › General Melanoma Community › Very bad news, looking for advice, support as I’m terrified!!

  • Post
    • May 21, 2014 at 10:36 pm
    sofistef
    Participant

      Hi,

       

      I had a shoulder MRI today to evaluate a presumable shoulder tendinits, and we received the horrible news that there is in fact a head of the humerus fracture due to a tumor!!. I'm in the phase 3 Ippi/ Nivo/ Ippi+Nivo trial. Last scan showed nothing and my doctor confirmed that the CT with contrast that I get every 6 weeks should have caught this. Next week i will have a PET CT , hopefully it will show nothing, as the MRI showed enough already. I find it so hard to believe that a tumor can grow that fast in a matter of weeks!! We a so floored by the news that I cannot think what to do next. I'm Braf negative . They will unblind me tomorrow to see what I can get. I'm so scared !!

       

      Thanks

      Dana

    Viewing 17 reply threads
    • Replies
        • May 22, 2014 at 1:31 am
        Bubbles
        Participant

          So sorry, Dana!

          All the science and technology doesn't always protect us, does it?  Hopefully when you learn what you've been getting you can make a good plan and go from there!  Wishing you the best, c

          • May 22, 2014 at 1:31 am
          Bubbles
          Participant

            So sorry, Dana!

            All the science and technology doesn't always protect us, does it?  Hopefully when you learn what you've been getting you can make a good plan and go from there!  Wishing you the best, c

            • May 22, 2014 at 1:31 am
            Bubbles
            Participant

              So sorry, Dana!

              All the science and technology doesn't always protect us, does it?  Hopefully when you learn what you've been getting you can make a good plan and go from there!  Wishing you the best, c

              • May 22, 2014 at 1:41 am
              BrianP
              Participant

                So sorry for your setback Dana.  Please keep us updated on your progress.  Anxious to hear what arm you were in.  Hang in there.

                Brian

                • May 22, 2014 at 1:41 am
                BrianP
                Participant

                  So sorry for your setback Dana.  Please keep us updated on your progress.  Anxious to hear what arm you were in.  Hang in there.

                  Brian

                  • May 22, 2014 at 1:41 am
                  BrianP
                  Participant

                    So sorry for your setback Dana.  Please keep us updated on your progress.  Anxious to hear what arm you were in.  Hang in there.

                    Brian

                    • May 22, 2014 at 4:28 am
                    Nadia
                    Participant

                      So sorry you have to go through this!  Next treatment will be decided by what drug you were on in the trial and the results of the PET CT next week.  If all will be ok at the scan, I think they may try to do some local radiation to try to get rid of the humerus tumor first.

                      I will wait for your updates anxiously, sending you positive vibes all the way!

                      • May 22, 2014 at 4:28 am
                      Nadia
                      Participant

                        So sorry you have to go through this!  Next treatment will be decided by what drug you were on in the trial and the results of the PET CT next week.  If all will be ok at the scan, I think they may try to do some local radiation to try to get rid of the humerus tumor first.

                        I will wait for your updates anxiously, sending you positive vibes all the way!

                        • May 22, 2014 at 4:28 am
                        Nadia
                        Participant

                          So sorry you have to go through this!  Next treatment will be decided by what drug you were on in the trial and the results of the PET CT next week.  If all will be ok at the scan, I think they may try to do some local radiation to try to get rid of the humerus tumor first.

                          I will wait for your updates anxiously, sending you positive vibes all the way!

                          • May 22, 2014 at 8:11 am
                          Jme
                          Participant

                            So very sorry to hear your news.  I am praying all will be ok. Please keep us posted once you know your medication and which direction you head next.  

                            Jenny

                            • May 22, 2014 at 8:11 am
                            Jme
                            Participant

                              So very sorry to hear your news.  I am praying all will be ok. Please keep us posted once you know your medication and which direction you head next.  

                              Jenny

                              • May 22, 2014 at 8:11 am
                              Jme
                              Participant

                                So very sorry to hear your news.  I am praying all will be ok. Please keep us posted once you know your medication and which direction you head next.  

                                Jenny

                                • May 22, 2014 at 11:36 am
                                Tina D
                                Participant

                                  Dana, So very sorry for this upsetting news. I can imagine how devastating it was to hear something so very unexpected. Will be anxious to hear what decisions are made as you go forward, once they unblind you and let you know what arm you have been in. I wish I could just calm the fears, but I know they are so real. Praying for you this morning. 

                                  Tina

                                  • May 22, 2014 at 11:36 am
                                  Tina D
                                  Participant

                                    Dana, So very sorry for this upsetting news. I can imagine how devastating it was to hear something so very unexpected. Will be anxious to hear what decisions are made as you go forward, once they unblind you and let you know what arm you have been in. I wish I could just calm the fears, but I know they are so real. Praying for you this morning. 

                                    Tina

                                      • May 22, 2014 at 12:49 pm
                                      sofistef
                                      Participant

                                        Thank you, guys for your responses.

                                        I will meet today with a radiologist to see if they can do some radiation to try to kill the tumor, my dr told something about cyber knife, but I never heard about this procedure on a bone met. He said I will have a PET CT , and  I hope I will not light up like a Xmas tree. I have a fear that I only got IPPI. Also, they tested the original tumor for Braf and it was negative, does anyone knows what are the odds that the mets to be positive. I remember reading about this but I don't remember where.

                                         

                                        Thank you for your prayers and warm thoughts , may God give me strength to fight this, I owe this to my young kids and poor husband

                                        • May 22, 2014 at 12:49 pm
                                        sofistef
                                        Participant

                                          Thank you, guys for your responses.

                                          I will meet today with a radiologist to see if they can do some radiation to try to kill the tumor, my dr told something about cyber knife, but I never heard about this procedure on a bone met. He said I will have a PET CT , and  I hope I will not light up like a Xmas tree. I have a fear that I only got IPPI. Also, they tested the original tumor for Braf and it was negative, does anyone knows what are the odds that the mets to be positive. I remember reading about this but I don't remember where.

                                           

                                          Thank you for your prayers and warm thoughts , may God give me strength to fight this, I owe this to my young kids and poor husband

                                          • May 22, 2014 at 4:45 pm
                                          BrianP
                                          Participant

                                            Dana,

                                            Hang in there Dana.  I'll be sending prayers your way. 

                                            I have a slightly different take on it than you.  I think it might be good if you only got ipi because then there would still be a chance that PD-1 would work for you.  I would think you would qualify for the EAP right now if that was the case.

                                            Brian

                                            • May 22, 2014 at 4:45 pm
                                            BrianP
                                            Participant

                                              Dana,

                                              Hang in there Dana.  I'll be sending prayers your way. 

                                              I have a slightly different take on it than you.  I think it might be good if you only got ipi because then there would still be a chance that PD-1 would work for you.  I would think you would qualify for the EAP right now if that was the case.

                                              Brian

                                              • May 22, 2014 at 4:45 pm
                                              BrianP
                                              Participant

                                                Dana,

                                                Hang in there Dana.  I'll be sending prayers your way. 

                                                I have a slightly different take on it than you.  I think it might be good if you only got ipi because then there would still be a chance that PD-1 would work for you.  I would think you would qualify for the EAP right now if that was the case.

                                                Brian

                                                • May 22, 2014 at 12:49 pm
                                                sofistef
                                                Participant

                                                  Thank you, guys for your responses.

                                                  I will meet today with a radiologist to see if they can do some radiation to try to kill the tumor, my dr told something about cyber knife, but I never heard about this procedure on a bone met. He said I will have a PET CT , and  I hope I will not light up like a Xmas tree. I have a fear that I only got IPPI. Also, they tested the original tumor for Braf and it was negative, does anyone knows what are the odds that the mets to be positive. I remember reading about this but I don't remember where.

                                                   

                                                  Thank you for your prayers and warm thoughts , may God give me strength to fight this, I owe this to my young kids and poor husband

                                                • May 22, 2014 at 11:36 am
                                                Tina D
                                                Participant

                                                  Dana, So very sorry for this upsetting news. I can imagine how devastating it was to hear something so very unexpected. Will be anxious to hear what decisions are made as you go forward, once they unblind you and let you know what arm you have been in. I wish I could just calm the fears, but I know they are so real. Praying for you this morning. 

                                                  Tina

                                                  • May 22, 2014 at 2:14 pm
                                                  Mat
                                                  Participant

                                                    Sorry to hear Dana.  As you know, there will be a number of options no matter which arm you were in (e.g., Merck EAP, TIL).  I also recall reading about folks having tumors re-tested for BRAF after initially being told that they are BRAF negative.

                                                    • May 22, 2014 at 2:14 pm
                                                    Mat
                                                    Participant

                                                      Sorry to hear Dana.  As you know, there will be a number of options no matter which arm you were in (e.g., Merck EAP, TIL).  I also recall reading about folks having tumors re-tested for BRAF after initially being told that they are BRAF negative.

                                                      • May 22, 2014 at 2:14 pm
                                                      Mat
                                                      Participant

                                                        Sorry to hear Dana.  As you know, there will be a number of options no matter which arm you were in (e.g., Merck EAP, TIL).  I also recall reading about folks having tumors re-tested for BRAF after initially being told that they are BRAF negative.

                                                    Viewing 17 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.

                                                    Popular Topics