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.

Pet Scan Results

Forums General Melanoma Community Pet Scan Results

  • Post
    JoshF
    Participant

      I had my PET Scan today and wasn't good news. There was an 8cm x 6cm mass around the intestines that lit up. Also something lit up by chest wall but didn't show a mass. It's been 6 months since my last scan and since I started PD-1. Unfortunately looks like I'm not a responder….disappointing.

      Next steps are CT Scan on Friday to get a "better read" on this. Seems like that tumor grew fast which scares me that this crap is getting more aggressive. My onc didn;t want to discuss in detail next steps until Friday but said we have options. I've been fortunate in so many ways and on the other hand I can't seem to catch a break. I'm tired and scared. I pray for all of us daily and fight to remain hopeful.

      Josh

    Viewing 38 reply threads
    • Replies
        m355
        Participant

          sorry to hear the news.  I know it can be discouraging but hopefully there is something else out there that you respond better to.  Praying for you!

          m355
          Participant

            sorry to hear the news.  I know it can be discouraging but hopefully there is something else out there that you respond better to.  Praying for you!

            m355
            Participant

              sorry to hear the news.  I know it can be discouraging but hopefully there is something else out there that you respond better to.  Praying for you!

              Bubbles
              Participant

                Oh, Josh!!!  I'm so sorry.  I've been thinking about you!!!  I just hate that.  I know you are sick of all of it.  It just wears on one doesn't it?  Hang in there!!!  Get that CT.  Then we'll all get to planning!!!  There ARE options and we will find them!!!!  Love, c

                Bubbles
                Participant

                  Oh, Josh!!!  I'm so sorry.  I've been thinking about you!!!  I just hate that.  I know you are sick of all of it.  It just wears on one doesn't it?  Hang in there!!!  Get that CT.  Then we'll all get to planning!!!  There ARE options and we will find them!!!!  Love, c

                  Bubbles
                  Participant

                    Oh, Josh!!!  I'm so sorry.  I've been thinking about you!!!  I just hate that.  I know you are sick of all of it.  It just wears on one doesn't it?  Hang in there!!!  Get that CT.  Then we'll all get to planning!!!  There ARE options and we will find them!!!!  Love, c

                    Polymath
                    Participant

                      Josh,

                      Hang in there and perhaps the news will improve with the CT.  As most know, PET scan measures metabiolic activity, and there's lots of reasons things light up.  I had the same scare recently with a glowing mass in my bowel that had never been seen before, but after the CT, it appeared there was nothing there.  Best wishes for good results and PD-1 response.

                      Gary

                      Polymath
                      Participant

                        Josh,

                        Hang in there and perhaps the news will improve with the CT.  As most know, PET scan measures metabiolic activity, and there's lots of reasons things light up.  I had the same scare recently with a glowing mass in my bowel that had never been seen before, but after the CT, it appeared there was nothing there.  Best wishes for good results and PD-1 response.

                        Gary

                        Polymath
                        Participant

                          Josh,

                          Hang in there and perhaps the news will improve with the CT.  As most know, PET scan measures metabiolic activity, and there's lots of reasons things light up.  I had the same scare recently with a glowing mass in my bowel that had never been seen before, but after the CT, it appeared there was nothing there.  Best wishes for good results and PD-1 response.

                          Gary

                          BrianP
                          Participant

                            Sorry Josh.  I'm really bummed for you.  I'm glad your doc has ideas on options.  Even just the last few days on here I've heard of some pretty cool trials going on that I hadn't heard of before.  Best of luck to you.

                            Brian

                            BrianP
                            Participant

                              Sorry Josh.  I'm really bummed for you.  I'm glad your doc has ideas on options.  Even just the last few days on here I've heard of some pretty cool trials going on that I hadn't heard of before.  Best of luck to you.

                              Brian

                              BrianP
                              Participant

                                Sorry Josh.  I'm really bummed for you.  I'm glad your doc has ideas on options.  Even just the last few days on here I've heard of some pretty cool trials going on that I hadn't heard of before.  Best of luck to you.

                                Brian

                                gregor913
                                Participant
                                  I’m sorry to hear this Josh. Hopefully after the ct it is a false light up. I will be saying a prayer for you tonight. Your doctor says there are options so try to keep your head up. My family always tells me act how you feel. Your strong and young. Greg
                                  gregor913
                                  Participant
                                    I’m sorry to hear this Josh. Hopefully after the ct it is a false light up. I will be saying a prayer for you tonight. Your doctor says there are options so try to keep your head up. My family always tells me act how you feel. Your strong and young. Greg
                                    gregor913
                                    Participant
                                      I’m sorry to hear this Josh. Hopefully after the ct it is a false light up. I will be saying a prayer for you tonight. Your doctor says there are options so try to keep your head up. My family always tells me act how you feel. Your strong and young. Greg
                                      WithinMySkin
                                      Participant
                                        I’m terribly sorry, Josh. As others have said, hopefully the CT says there’s nothing to be concerned about. After the CT, make sure you go and do something fun with the family to get your mind off things. Praying for good news for you!
                                        WithinMySkin
                                        Participant
                                          I’m terribly sorry, Josh. As others have said, hopefully the CT says there’s nothing to be concerned about. After the CT, make sure you go and do something fun with the family to get your mind off things. Praying for good news for you!
                                          WithinMySkin
                                          Participant
                                            I’m terribly sorry, Josh. As others have said, hopefully the CT says there’s nothing to be concerned about. After the CT, make sure you go and do something fun with the family to get your mind off things. Praying for good news for you!
                                            Mat
                                            Participant

                                              Josh, no words.  Melanoma sucks.  They could tell me I was NED tomorrow and I'd never believe that it would last.

                                              Mat
                                              Participant

                                                Josh, no words.  Melanoma sucks.  They could tell me I was NED tomorrow and I'd never believe that it would last.

                                                Mat
                                                Participant

                                                  Josh, no words.  Melanoma sucks.  They could tell me I was NED tomorrow and I'd never believe that it would last.

                                                  Mark_DC
                                                  Participant

                                                    Hi Josh, am not an expert but am hoping that the ct scan will be better, also am hoping actually that you are a responder after all. Good luck will be praying for you and good results

                                                    Mark_DC
                                                    Participant

                                                      Hi Josh, am not an expert but am hoping that the ct scan will be better, also am hoping actually that you are a responder after all. Good luck will be praying for you and good results

                                                      Mark_DC
                                                      Participant

                                                        Hi Josh, am not an expert but am hoping that the ct scan will be better, also am hoping actually that you are a responder after all. Good luck will be praying for you and good results

                                                        Bradley75
                                                        Participant

                                                          Josh,

                                                          Praying for you that you will find strength and peace to deal with whatever tomorrow's scan shows.  We are all behind you hopong and praying for the best for you and your family.

                                                          Brad

                                                          Bradley75
                                                          Participant

                                                            Josh,

                                                            Praying for you that you will find strength and peace to deal with whatever tomorrow's scan shows.  We are all behind you hopong and praying for the best for you and your family.

                                                            Brad

                                                            Bradley75
                                                            Participant

                                                              Josh,

                                                              Praying for you that you will find strength and peace to deal with whatever tomorrow's scan shows.  We are all behind you hopong and praying for the best for you and your family.

                                                              Brad

                                                              Scooby123
                                                              Participant

                                                                Hi Josh,

                                                                hope all goes well on Friday for results for you. Good that you onc has got options for you.

                                                                be strong and deal with it one day at a time. 

                                                                Scooby123❤️

                                                                Scooby123
                                                                Participant

                                                                  Hi Josh,

                                                                  hope all goes well on Friday for results for you. Good that you onc has got options for you.

                                                                  be strong and deal with it one day at a time. 

                                                                  Scooby123❤️

                                                                  Scooby123
                                                                  Participant

                                                                    Hi Josh,

                                                                    hope all goes well on Friday for results for you. Good that you onc has got options for you.

                                                                    be strong and deal with it one day at a time. 

                                                                    Scooby123❤️

                                                                    casagrayson
                                                                    Participant

                                                                      Well, that is crappy!!  Let's hope the PET was a false positive, and you'll be able to just move on with the PD-1.  If not, there are options, and you'll use them to tackle this head-on!

                                                                      casagrayson
                                                                      Participant

                                                                        Well, that is crappy!!  Let's hope the PET was a false positive, and you'll be able to just move on with the PD-1.  If not, there are options, and you'll use them to tackle this head-on!

                                                                        casagrayson
                                                                        Participant

                                                                          Well, that is crappy!!  Let's hope the PET was a false positive, and you'll be able to just move on with the PD-1.  If not, there are options, and you'll use them to tackle this head-on!

                                                                          DZnDef
                                                                          Participant

                                                                            Hi Josh,  What harsh news to hear!  Maybe the CT scan will give better news.  Regardless, I hope you get this beast under control soon.

                                                                            DZnDef
                                                                            Participant

                                                                              Hi Josh,  What harsh news to hear!  Maybe the CT scan will give better news.  Regardless, I hope you get this beast under control soon.

                                                                              DZnDef
                                                                              Participant

                                                                                Hi Josh,  What harsh news to hear!  Maybe the CT scan will give better news.  Regardless, I hope you get this beast under control soon.

                                                                                jenny22
                                                                                Participant

                                                                                  HI Josh-

                                                                                  Really sorry to read this tonight…..as everyone has already said, lets hope the CT may prove to be better news, and IF not, then as Celeste said, you'll (we"ll) start planning…..

                                                                                  For now, sneding you good thoughts…..and hoping for better news.

                                                                                  best,

                                                                                  jenny

                                                                                  jenny22
                                                                                  Participant

                                                                                    HI Josh-

                                                                                    Really sorry to read this tonight…..as everyone has already said, lets hope the CT may prove to be better news, and IF not, then as Celeste said, you'll (we"ll) start planning…..

                                                                                    For now, sneding you good thoughts…..and hoping for better news.

                                                                                    best,

                                                                                    jenny

                                                                                    jenny22
                                                                                    Participant

                                                                                      HI Josh-

                                                                                      Really sorry to read this tonight…..as everyone has already said, lets hope the CT may prove to be better news, and IF not, then as Celeste said, you'll (we"ll) start planning…..

                                                                                      For now, sneding you good thoughts…..and hoping for better news.

                                                                                      best,

                                                                                      jenny

                                                                                  Viewing 38 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