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Anybody progressed on 1st scan post Yervoy and gone on to be fine?
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Anybody progressed on 1st scan post Yervoy and gone on to be fine?

› Forums › General Melanoma Community › Anybody progressed on 1st scan post Yervoy and gone on to be fine?

  • Post
    • March 2, 2012 at 2:56 am
    gabsound
    Participant

       

      Just finished Yervoy 02-17-2012 and finished radiation to right thigh 02-12-2012

       

      Results of brain MRI are normal.

       

      Just finished Yervoy 02-17-2012 and finished radiation to right thigh 02-12-2012

       

      Results of brain MRI are normal.

      Results of PET CT are devastating. Impression: Extensive progression of malignant disease. Development of multiple hepatic, osseous and pulmonary metastatic lesions. MELASUCKANOMA!!! Pain in hip and back probably mets-but has gotten better.

       

      Had office visit with Dr. Samlowski. He says keep in mind we have been treating metastatic melanoma all along. He says results of first scan post Yervoy are difficult to interpret. He has seen with many patients that the first scan shows "pseudoprogression of disease" and patients have gone on to have lesions disappear. In a way I'm wondering if my body has finally gotten the message that it needs to get to work and has really started to attack this melanoma in my body. Has this been sitting here for a while? Last PET/CT and brain MRI were Nov 1, 2011 and just showed malignant lesion in the leg with no other disease. The thing is for the most part I feel fine. Bone pain is gone. My liver is quite enlarged, which I can feel and that makes it hard to eat a big meal, but other than that I feel fine!. Dr Sam said this is a good sign that scan doesn't match how I feel. We will see.

       

      Labs also drawn the same day. Plan will be to have labs again in 2 weeks and in 4 weeks. See him in 4 weeks at which time PET/CT will be repeated if labs are showing further abnormality and rescan in 6 weeks (from last scan) if labs are stable or improving. He mentioned at least 4 options for further treatment should the Yervoy not be working-Anti PD 1, chemo with Avastin, Abraxane and Carboplatin (not sure if I have all those drugs right-he will save this for last but has pt's that have done well on this), and a couple of clinical trials- I should have written this stuff down. He's not done treating me and I definitely am not done fighting! 

       

      Anybody else that's had bad news on 1st scan post Yervoy and gone on to show improvement?

       

      Julie in Las Vegas

       

       

       

    Viewing 8 reply threads
    • Replies
        • March 2, 2012 at 4:35 am
        Kimberly Duncan Watts
        Participant
          Julie, sorry to hear it wasn’t all good news. My first scans post treatment had me thoroughly confused. Doctor said it looked all lesions in abdomen MAY be gone, so small they may be cysts. Couldn’t really tell if there was any change in bowel or not. My organs, however, were disease free. I don’t have MRIs (anybody find that odd besides me?) so have no idea what’s going on in brain. I’ve not had brain mets to date.

          Remember, if you are responding, the 16- wk scans should show more improvement as it does take the body time to “get with the program” so to speak.

          I was rather addled that my onc. Wasn’t as enthusiastic over my scans as I was. It appeared to me that i was responding (also had a good size subcutaneous mass on my back that you could see and feel, which is gone completely) well…

          Good luck and keep us updated! And NEVER give up the fight!

          • March 2, 2012 at 4:35 am
          Kimberly Duncan Watts
          Participant
            Julie, sorry to hear it wasn’t all good news. My first scans post treatment had me thoroughly confused. Doctor said it looked all lesions in abdomen MAY be gone, so small they may be cysts. Couldn’t really tell if there was any change in bowel or not. My organs, however, were disease free. I don’t have MRIs (anybody find that odd besides me?) so have no idea what’s going on in brain. I’ve not had brain mets to date.

            Remember, if you are responding, the 16- wk scans should show more improvement as it does take the body time to “get with the program” so to speak.

            I was rather addled that my onc. Wasn’t as enthusiastic over my scans as I was. It appeared to me that i was responding (also had a good size subcutaneous mass on my back that you could see and feel, which is gone completely) well…

            Good luck and keep us updated! And NEVER give up the fight!

            • March 2, 2012 at 4:35 am
            Kimberly Duncan Watts
            Participant
              Julie, sorry to hear it wasn’t all good news. My first scans post treatment had me thoroughly confused. Doctor said it looked all lesions in abdomen MAY be gone, so small they may be cysts. Couldn’t really tell if there was any change in bowel or not. My organs, however, were disease free. I don’t have MRIs (anybody find that odd besides me?) so have no idea what’s going on in brain. I’ve not had brain mets to date.

              Remember, if you are responding, the 16- wk scans should show more improvement as it does take the body time to “get with the program” so to speak.

              I was rather addled that my onc. Wasn’t as enthusiastic over my scans as I was. It appeared to me that i was responding (also had a good size subcutaneous mass on my back that you could see and feel, which is gone completely) well…

              Good luck and keep us updated! And NEVER give up the fight!

              • March 11, 2012 at 11:57 pm
              PhoenixJ
              Participant
                Hi Julie,

                I am sorry to hear about your CT results. I know the kind of anxiety that can produce. I was actually scanned early (1week after ipi was completed) because I had a rapidly growing subq met as well as 3 new brain mets discovered on a follow up MRI done 6 weeks after my Stereotactic radiation ( for a single brain met found 2 months ago). My onc suggested the scans because I already had sizable mets before ipi was started and he was concerned that given the MRI results and the subq growth my other mets might have been growing. This scan showed growth in all my mets but no new mets. He decided to stay the course and I was re-imaged 4 weeks later. This scan showed stability in some mets and a small amount of shrinkage in others. It wasn’t an amazing result but he is optimistic that things may be turning in the right direction. Like you my pain has started to regress, so I think that you should take that as a good sign. Please don’t give up hope, the waiting game is the hardest, and things can turn around.

                • March 11, 2012 at 11:57 pm
                PhoenixJ
                Participant
                  Hi Julie,

                  I am sorry to hear about your CT results. I know the kind of anxiety that can produce. I was actually scanned early (1week after ipi was completed) because I had a rapidly growing subq met as well as 3 new brain mets discovered on a follow up MRI done 6 weeks after my Stereotactic radiation ( for a single brain met found 2 months ago). My onc suggested the scans because I already had sizable mets before ipi was started and he was concerned that given the MRI results and the subq growth my other mets might have been growing. This scan showed growth in all my mets but no new mets. He decided to stay the course and I was re-imaged 4 weeks later. This scan showed stability in some mets and a small amount of shrinkage in others. It wasn’t an amazing result but he is optimistic that things may be turning in the right direction. Like you my pain has started to regress, so I think that you should take that as a good sign. Please don’t give up hope, the waiting game is the hardest, and things can turn around.

                  • March 11, 2012 at 11:57 pm
                  PhoenixJ
                  Participant
                    Hi Julie,

                    I am sorry to hear about your CT results. I know the kind of anxiety that can produce. I was actually scanned early (1week after ipi was completed) because I had a rapidly growing subq met as well as 3 new brain mets discovered on a follow up MRI done 6 weeks after my Stereotactic radiation ( for a single brain met found 2 months ago). My onc suggested the scans because I already had sizable mets before ipi was started and he was concerned that given the MRI results and the subq growth my other mets might have been growing. This scan showed growth in all my mets but no new mets. He decided to stay the course and I was re-imaged 4 weeks later. This scan showed stability in some mets and a small amount of shrinkage in others. It wasn’t an amazing result but he is optimistic that things may be turning in the right direction. Like you my pain has started to regress, so I think that you should take that as a good sign. Please don’t give up hope, the waiting game is the hardest, and things can turn around.

                    • April 29, 2012 at 8:56 pm
                    susanr
                    Participant

                      Hi Julie,

                      Was browsing the posts and came across yours.  First, I hope you are doing well.  My brothers history was just like yours.  His PET/CT after finishing Yervoy lite up like a X-mas tree.  After, that he started Temodor.  After 5 weeks he became worse, re-scanned and the same readings….progression of eveything…pelvic mass, rt. femur lesion, mult. pulm nodules.  Thank god brain and liver and other organs clear.  He then started Abraxane w/ the Temodor and it will be wait and see.  I hear Avastin is not an option because of all the fake drug vials coming into the U.S.  Like to hear  what your onc. is treating you with.  Fight hard and keep us posted.

                       

                      Susan

                      • April 29, 2012 at 8:56 pm
                      susanr
                      Participant

                        Hi Julie,

                        Was browsing the posts and came across yours.  First, I hope you are doing well.  My brothers history was just like yours.  His PET/CT after finishing Yervoy lite up like a X-mas tree.  After, that he started Temodor.  After 5 weeks he became worse, re-scanned and the same readings….progression of eveything…pelvic mass, rt. femur lesion, mult. pulm nodules.  Thank god brain and liver and other organs clear.  He then started Abraxane w/ the Temodor and it will be wait and see.  I hear Avastin is not an option because of all the fake drug vials coming into the U.S.  Like to hear  what your onc. is treating you with.  Fight hard and keep us posted.

                         

                        Susan

                        • April 29, 2012 at 8:56 pm
                        susanr
                        Participant

                          Hi Julie,

                          Was browsing the posts and came across yours.  First, I hope you are doing well.  My brothers history was just like yours.  His PET/CT after finishing Yervoy lite up like a X-mas tree.  After, that he started Temodor.  After 5 weeks he became worse, re-scanned and the same readings….progression of eveything…pelvic mass, rt. femur lesion, mult. pulm nodules.  Thank god brain and liver and other organs clear.  He then started Abraxane w/ the Temodor and it will be wait and see.  I hear Avastin is not an option because of all the fake drug vials coming into the U.S.  Like to hear  what your onc. is treating you with.  Fight hard and keep us posted.

                           

                          Susan

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