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I’m terrified. Hot spots on PET. They are melanoma?

Forums General Melanoma Community I’m terrified. Hot spots on PET. They are melanoma?

  • Post
    gaby
    Participant

      I'm really scared. My husband was diagnosed in 2012 stage3a melanoma , because he had micrometastasis in the sentinel node , the rest (12)  were clean. He had in 2012, 38 years old. He started in October 2012 with high doses of pegylated interferon for two months and after that continuous average dose to date. He was positive despite the side effects of pegylated interferon and was determined to complete the two years of treatment. He had from the diagnostic CT every 6 months thank God for all normal except when some nodes increased in size. So the oncologist  decided to make a pet. Yesterday I got the result of my husband's pet. The result is very bad, there are many hot spots in the pelvis iliac chains. I am very distressed.  As can be? Almost two years ago on her 12 nodes removed, only the sentinel tested positive with micrometastasis, the rest clean … and now almost 2 years later again melanoma? or is another primary melanoma? now is stage 3 or 4? what will be the decision of the oncologist?  The prognostic is  going to get worse?

      thanks to all

       

      gaby (from argentina)

    Viewing 5 reply threads
    • Replies
        Brent Morris
        Participant

          Dear Gaby ,

           I understand your alarm. The first thing is to try to know exactly what is there.. The CT scan and the PET scans need to be compared. Is the positive finding only in the nodes? Are there other positive areas in the internal organs (lungs,liver, and so on)? Is your husband going to have an MRI of the brain? After you get more information then you can plan. Yes, it is possible to progress after only a micrometastasis in one node and interferon. But, there are also some effective treatments that can be used. Don't panic. Get to work figuring out what is happening and then make plans.

                                                                                                                Buena Suerte. Pensamos de Ustedes

          Brent Morris
          Participant

            Dear Gaby ,

             I understand your alarm. The first thing is to try to know exactly what is there.. The CT scan and the PET scans need to be compared. Is the positive finding only in the nodes? Are there other positive areas in the internal organs (lungs,liver, and so on)? Is your husband going to have an MRI of the brain? After you get more information then you can plan. Yes, it is possible to progress after only a micrometastasis in one node and interferon. But, there are also some effective treatments that can be used. Don't panic. Get to work figuring out what is happening and then make plans.

                                                                                                                  Buena Suerte. Pensamos de Ustedes

            Brent Morris
            Participant

              Dear Gaby ,

               I understand your alarm. The first thing is to try to know exactly what is there.. The CT scan and the PET scans need to be compared. Is the positive finding only in the nodes? Are there other positive areas in the internal organs (lungs,liver, and so on)? Is your husband going to have an MRI of the brain? After you get more information then you can plan. Yes, it is possible to progress after only a micrometastasis in one node and interferon. But, there are also some effective treatments that can be used. Don't panic. Get to work figuring out what is happening and then make plans.

                                                                                                                    Buena Suerte. Pensamos de Ustedes

                gaby
                Participant

                  Hi Brent, He did PET and CT. The last CT show nodes increased in size, and the PET show in this nodes hot spots. It is melanoma? or there is a possibility that another reason? is possible extirpation of these nodes?

                  the internal organs  are clean.

                   

                  Thanks!

                  Gaby

                  gaby
                  Participant

                    Hi Brent, He did PET and CT. The last CT show nodes increased in size, and the PET show in this nodes hot spots. It is melanoma? or there is a possibility that another reason? is possible extirpation of these nodes?

                    the internal organs  are clean.

                     

                    Thanks!

                    Gaby

                    gaby
                    Participant

                      Hi Brent, He did PET and CT. The last CT show nodes increased in size, and the PET show in this nodes hot spots. It is melanoma? or there is a possibility that another reason? is possible extirpation of these nodes?

                      the internal organs  are clean.

                       

                      Thanks!

                      Gaby

                      Brent Morris
                      Participant

                        Dear Gaby   If the nodes are larger and they are hot on the PET scan they are probably melanoma. They can be removed or at least biopsied. Your husband then is at least Stage 3 and you should start looking at preventative (adjunct) therapies. This is difficult because the usual adjunct is interferon which is not very effective. You need to see if there are any clinical trials available in Argentina or consider travelling to trials in the US.   Todavia hay muchas cosas a hacer.

                        Brent Morris
                        Participant

                          Dear Gaby   If the nodes are larger and they are hot on the PET scan they are probably melanoma. They can be removed or at least biopsied. Your husband then is at least Stage 3 and you should start looking at preventative (adjunct) therapies. This is difficult because the usual adjunct is interferon which is not very effective. You need to see if there are any clinical trials available in Argentina or consider travelling to trials in the US.   Todavia hay muchas cosas a hacer.

                          Brent Morris
                          Participant

                            Dear Gaby   If the nodes are larger and they are hot on the PET scan they are probably melanoma. They can be removed or at least biopsied. Your husband then is at least Stage 3 and you should start looking at preventative (adjunct) therapies. This is difficult because the usual adjunct is interferon which is not very effective. You need to see if there are any clinical trials available in Argentina or consider travelling to trials in the US.   Todavia hay muchas cosas a hacer.

                          JerryfromFauq
                          Participant

                            As stated above, get a more complete picture.  I was where your husband is in OCt 2006, except also had the inquinal nodes acting like light bulps.  There was really only one treaatment that offered any really positive chance.  The IL-2 worked for 20 months, then there was no other clinical trial I qualified for then.  i'm still here and there are  now 5 additional treatments approved (Melanoma type dependent). and a dozen more treatments in trials, one of which should be approved by our FDA any day now.

                                Yes, your your husbands situation is serious, but it is not hopeless, going to the lynph nodes should make him stage III now.

                            JerryfromFauq
                            Participant

                              As stated above, get a more complete picture.  I was where your husband is in OCt 2006, except also had the inquinal nodes acting like light bulps.  There was really only one treaatment that offered any really positive chance.  The IL-2 worked for 20 months, then there was no other clinical trial I qualified for then.  i'm still here and there are  now 5 additional treatments approved (Melanoma type dependent). and a dozen more treatments in trials, one of which should be approved by our FDA any day now.

                                  Yes, your your husbands situation is serious, but it is not hopeless, going to the lynph nodes should make him stage III now.

                              JerryfromFauq
                              Participant

                                As stated above, get a more complete picture.  I was where your husband is in OCt 2006, except also had the inquinal nodes acting like light bulps.  There was really only one treaatment that offered any really positive chance.  The IL-2 worked for 20 months, then there was no other clinical trial I qualified for then.  i'm still here and there are  now 5 additional treatments approved (Melanoma type dependent). and a dozen more treatments in trials, one of which should be approved by our FDA any day now.

                                    Yes, your your husbands situation is serious, but it is not hopeless, going to the lynph nodes should make him stage III now.

                                  gaby
                                  Participant

                                    Hi Jerry, the internal organs are clean, only have hot spot on a pelvic nodes. My husband did PET and CT.  The oncologist decided to make a pet because my husband has enlarged nodes since January 2013.

                                    Hot spots on enlarged lymph in PET-CT, are always recurrent melanoma? I have hope that the enlarged lymph is by interferon and no recurrence of melanoma ..

                                     

                                    Kisses

                                    Gaby

                                    gaby
                                    Participant

                                      Hi Jerry, the internal organs are clean, only have hot spot on a pelvic nodes. My husband did PET and CT.  The oncologist decided to make a pet because my husband has enlarged nodes since January 2013.

                                      Hot spots on enlarged lymph in PET-CT, are always recurrent melanoma? I have hope that the enlarged lymph is by interferon and no recurrence of melanoma ..

                                       

                                      Kisses

                                      Gaby

                                      gaby
                                      Participant

                                        Hi Jerry, the internal organs are clean, only have hot spot on a pelvic nodes. My husband did PET and CT.  The oncologist decided to make a pet because my husband has enlarged nodes since January 2013.

                                        Hot spots on enlarged lymph in PET-CT, are always recurrent melanoma? I have hope that the enlarged lymph is by interferon and no recurrence of melanoma ..

                                         

                                        Kisses

                                        Gaby

                                        JerryfromFauq
                                        Participant

                                          One can never say always nor say never with melanoma.  He should get at least an FNA (Fine Needle Aspiration).  Your Oncologist did good by doing the PET scan to check the body for possible locations of spread.  If the CT scans show enlargement, I would want to get the growing lymph nodes out as soon as possible.  My groin nodes went from not showing on a PET, huge and ones I could readily feel in a few months time and then to my lungs a month after the lungs not showing on a PET.  Do get the nodes verified as to what the glucose uptake is from.

                                          JerryfromFauq
                                          Participant

                                            One can never say always nor say never with melanoma.  He should get at least an FNA (Fine Needle Aspiration).  Your Oncologist did good by doing the PET scan to check the body for possible locations of spread.  If the CT scans show enlargement, I would want to get the growing lymph nodes out as soon as possible.  My groin nodes went from not showing on a PET, huge and ones I could readily feel in a few months time and then to my lungs a month after the lungs not showing on a PET.  Do get the nodes verified as to what the glucose uptake is from.

                                            JerryfromFauq
                                            Participant

                                              One can never say always nor say never with melanoma.  He should get at least an FNA (Fine Needle Aspiration).  Your Oncologist did good by doing the PET scan to check the body for possible locations of spread.  If the CT scans show enlargement, I would want to get the growing lymph nodes out as soon as possible.  My groin nodes went from not showing on a PET, huge and ones I could readily feel in a few months time and then to my lungs a month after the lungs not showing on a PET.  Do get the nodes verified as to what the glucose uptake is from.

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