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PET/CT results 1yr. from start of HD IL-2
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PET/CT results 1yr. from start of HD IL-2

› Forums › General Melanoma Community › PET/CT results 1yr. from start of HD IL-2

  • Post
    • April 9, 2012 at 11:09 pm
    Karin L
    Participant

      Today is 2 days shy from 1yr.

      Today is 2 days shy from 1yr. ago beginning 2 courses of HD IL2.  I had a PET/CT and the results were amazing.  No signs of disease in the lymph nodes, liver or bones.  One area did light up however, and that is the L5 area in the spine (I did have disease there previous).  Getting a lower spine MRI to determine exactly what is going on and we will go from there.  I have had some severe neuropothy in both hands and feet (to the point I could feel nothing up to my knees) and other parts of the body were pins and needle feeling also (lips, teeth, etc.) and the neurologist thought the pain in my right leg was from a pinched nerve.  After completing Solu-Medrol and tapered off Prednisone the neuropothy is under control except for the right leg area still having numbness.  This is all connected somehow so we will get it figured out! 

      I almost made it into the 6% club!!!  I choose to believe I just might get there yet : ).  As bad as it was within the liver and the bones…this is crazy good news!  Gone, all gone but this one area.

       

      Karin

    Viewing 8 reply threads
    • Replies
        • April 10, 2012 at 4:47 am
        Ali
        Participant

          Karin!  I have been wondering what your scans would look like.  That is very encouraging!  I will vote you in the 6% club if I can.  Keep us posted!

          Ali

            • April 10, 2012 at 2:24 pm
            Karin L
            Participant

              Oh good, you sound good Ali.  I thought about you every day last week and prayed you did that last torturous week well.   You are going to do well too, I feel it. 

               

              Karin

              • April 10, 2012 at 2:24 pm
              Karin L
              Participant

                Oh good, you sound good Ali.  I thought about you every day last week and prayed you did that last torturous week well.   You are going to do well too, I feel it. 

                 

                Karin

                • April 10, 2012 at 2:24 pm
                Karin L
                Participant

                  Oh good, you sound good Ali.  I thought about you every day last week and prayed you did that last torturous week well.   You are going to do well too, I feel it. 

                   

                  Karin

                • April 10, 2012 at 4:47 am
                Ali
                Participant

                  Karin!  I have been wondering what your scans would look like.  That is very encouraging!  I will vote you in the 6% club if I can.  Keep us posted!

                  Ali

                  • April 10, 2012 at 4:47 am
                  Ali
                  Participant

                    Karin!  I have been wondering what your scans would look like.  That is very encouraging!  I will vote you in the 6% club if I can.  Keep us posted!

                    Ali

                    • April 10, 2012 at 3:19 pm
                    Rebecca and Bob
                    Participant

                      Karin,

                       

                      Wishing you luck on your results and that it is nothing, but remember if it is something then hopefully that will be the last of it.

                      Rebecca

                      • April 10, 2012 at 3:19 pm
                      Rebecca and Bob
                      Participant

                        Karin,

                         

                        Wishing you luck on your results and that it is nothing, but remember if it is something then hopefully that will be the last of it.

                        Rebecca

                        • April 10, 2012 at 3:19 pm
                        Rebecca and Bob
                        Participant

                          Karin,

                           

                          Wishing you luck on your results and that it is nothing, but remember if it is something then hopefully that will be the last of it.

                          Rebecca

                          • April 11, 2012 at 5:07 am
                          JerryfromFauq
                          Participant

                            re thy planning on dooing the standard third round (wweeks 5 & 6) of the IL-2?  The 3rd round was what knocked out DebbieVa's last tumors FIVE years ago.  (She's still NED.)  She had to change oncologists to get the third roundd administered, but it did the jjb.

                            • April 11, 2012 at 5:07 am
                            JerryfromFauq
                            Participant

                              re thy planning on dooing the standard third round (wweeks 5 & 6) of the IL-2?  The 3rd round was what knocked out DebbieVa's last tumors FIVE years ago.  (She's still NED.)  She had to change oncologists to get the third roundd administered, but it did the jjb.

                                • April 11, 2012 at 2:45 pm
                                Karin L
                                Participant

                                  Jerry…no talk yet as to what we are going to do.  Wait to see what the MRI shows.  Dr. did say he was going to consult with his collegues (tumor board?)  after the results.  I would do the IL2, and I believe if I wanted to do it my Dr. would be on board, but I am a tad shy from the long term side affects I have had since treatment.  It has kicked my immune system's tush!  Don't get me wrong…small prices to pay no doubt. 

                                  What I don't get is…. how the IL2 has wiped out the lymph node tumors which were quite large, the numerous liver tumors and the numerous bone lesions and left just one?  I dunno. 

                                   

                                  Karin

                                  • April 11, 2012 at 2:45 pm
                                  Karin L
                                  Participant

                                    Jerry…no talk yet as to what we are going to do.  Wait to see what the MRI shows.  Dr. did say he was going to consult with his collegues (tumor board?)  after the results.  I would do the IL2, and I believe if I wanted to do it my Dr. would be on board, but I am a tad shy from the long term side affects I have had since treatment.  It has kicked my immune system's tush!  Don't get me wrong…small prices to pay no doubt. 

                                    What I don't get is…. how the IL2 has wiped out the lymph node tumors which were quite large, the numerous liver tumors and the numerous bone lesions and left just one?  I dunno. 

                                     

                                    Karin

                                    • April 11, 2012 at 2:45 pm
                                    Karin L
                                    Participant

                                      Jerry…no talk yet as to what we are going to do.  Wait to see what the MRI shows.  Dr. did say he was going to consult with his collegues (tumor board?)  after the results.  I would do the IL2, and I believe if I wanted to do it my Dr. would be on board, but I am a tad shy from the long term side affects I have had since treatment.  It has kicked my immune system's tush!  Don't get me wrong…small prices to pay no doubt. 

                                      What I don't get is…. how the IL2 has wiped out the lymph node tumors which were quite large, the numerous liver tumors and the numerous bone lesions and left just one?  I dunno. 

                                       

                                      Karin

                                      • April 11, 2012 at 8:26 pm
                                      JerryfromFauq
                                      Participant

                                        There is always a chance the Temodar will work.  I know that for c-kit melanoma Dr Wen Jen Hwu has used the combination of Gleevec (a cytostatic) and Temodar (to ceate apoptois) with some success. 

                                            I don't know if PD-1 targeted treatments are an option, but they seem to be doing good in many cases where they are an option.  The PD-1 trials I have seen want an HLA-02 which I don't have. (darn it!)

                                        • April 11, 2012 at 8:26 pm
                                        JerryfromFauq
                                        Participant

                                          There is always a chance the Temodar will work.  I know that for c-kit melanoma Dr Wen Jen Hwu has used the combination of Gleevec (a cytostatic) and Temodar (to ceate apoptois) with some success. 

                                              I don't know if PD-1 targeted treatments are an option, but they seem to be doing good in many cases where they are an option.  The PD-1 trials I have seen want an HLA-02 which I don't have. (darn it!)

                                          • April 11, 2012 at 8:26 pm
                                          JerryfromFauq
                                          Participant

                                            There is always a chance the Temodar will work.  I know that for c-kit melanoma Dr Wen Jen Hwu has used the combination of Gleevec (a cytostatic) and Temodar (to ceate apoptois) with some success. 

                                                I don't know if PD-1 targeted treatments are an option, but they seem to be doing good in many cases where they are an option.  The PD-1 trials I have seen want an HLA-02 which I don't have. (darn it!)

                                          • April 11, 2012 at 5:07 am
                                          JerryfromFauq
                                          Participant

                                            re thy planning on dooing the standard third round (wweeks 5 & 6) of the IL-2?  The 3rd round was what knocked out DebbieVa's last tumors FIVE years ago.  (She's still NED.)  She had to change oncologists to get the third roundd administered, but it did the jjb.

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