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Update on Esther
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Update on Esther

› Forums › General Melanoma Community › Update on Esther

  • Post
    • May 18, 2012 at 1:13 am
    edamaser
    Participant

      Hi Everyone,

      I had scans yesterday–mixed results.  From the neck down my numerous, multiple, and widespread lesions are stable or shrinking by tiny amounts (there is one new one in the neck).  Overall, Dr. Weber feels this is an indication that ipi is working, and wants to do nothing unless there is progression, in which case he thinks another ipi induction would be in order.  I agree, except that I would love to have a re-induction of ipi right now and not wait for progression.  But it's not my call.

      Hi Everyone,

      I had scans yesterday–mixed results.  From the neck down my numerous, multiple, and widespread lesions are stable or shrinking by tiny amounts (there is one new one in the neck).  Overall, Dr. Weber feels this is an indication that ipi is working, and wants to do nothing unless there is progression, in which case he thinks another ipi induction would be in order.  I agree, except that I would love to have a re-induction of ipi right now and not wait for progression.  But it's not my call.

      The bad news is that the 4mm lesion in my brain, noted 3 months ago is now 6mm.  Also there is a 1mm spot in the brain which is non-enhancing (therefore not clear whether it is melanoma or not); this is new.  Tomorrow I will have a fancy MRI, a Novalis, which makes 1mm cuts of images rather then the usual 5mm.  So, stereotactic radiation is in order, at least for the 6mm one, and maybe both.  I have no symptoms whatsoever from any of the lesions, brain or otherwise.

      I will follow up on stereotactic radiation at Moffitt asap.

      Bad news, but no complaints.  It has been 9 1/2 years since my first liver lesions.  Life has been good to me during that time.  Life is still good, though I must say that these ups and downs are wearing…

      I wish the best for all of you,

      Esther

    Viewing 5 reply threads
    • Replies
        • May 18, 2012 at 6:59 am
        lak
        Participant

          Dear Esther,

          I am so sorry that its so constant for you and understand how you feel at 91/2 years- I m the same and its 3and a bit. We know we are lucky but it doesnt mean its easy and it doesn't mean I can give up.

           

          I hope the sterotatic radiation goes well and swiftly I will be thinking of you. 1mm slicing is very reassuring that s what I had in January. Surprisingly it does not take too long to do the scan either.

          I too want ipilimumab. I have no disease but  I progressed on ipi in the short term its only since I have been disease free and no new lesions for more than year that i want ipi now.  It seems as though it works on them microscopically but cant once growth is established. That s my theory no evidence for it so thats that.

          There were some OM s who did get maintenance Mark's Susan I remember anyone know how they are doing?

           Thinking of you

           

          carpe diem

           

          Lesley

          • May 18, 2012 at 6:59 am
          lak
          Participant

            Dear Esther,

            I am so sorry that its so constant for you and understand how you feel at 91/2 years- I m the same and its 3and a bit. We know we are lucky but it doesnt mean its easy and it doesn't mean I can give up.

             

            I hope the sterotatic radiation goes well and swiftly I will be thinking of you. 1mm slicing is very reassuring that s what I had in January. Surprisingly it does not take too long to do the scan either.

            I too want ipilimumab. I have no disease but  I progressed on ipi in the short term its only since I have been disease free and no new lesions for more than year that i want ipi now.  It seems as though it works on them microscopically but cant once growth is established. That s my theory no evidence for it so thats that.

            There were some OM s who did get maintenance Mark's Susan I remember anyone know how they are doing?

             Thinking of you

             

            carpe diem

             

            Lesley

            • May 18, 2012 at 6:59 am
            lak
            Participant

              Dear Esther,

              I am so sorry that its so constant for you and understand how you feel at 91/2 years- I m the same and its 3and a bit. We know we are lucky but it doesnt mean its easy and it doesn't mean I can give up.

               

              I hope the sterotatic radiation goes well and swiftly I will be thinking of you. 1mm slicing is very reassuring that s what I had in January. Surprisingly it does not take too long to do the scan either.

              I too want ipilimumab. I have no disease but  I progressed on ipi in the short term its only since I have been disease free and no new lesions for more than year that i want ipi now.  It seems as though it works on them microscopically but cant once growth is established. That s my theory no evidence for it so thats that.

              There were some OM s who did get maintenance Mark's Susan I remember anyone know how they are doing?

               Thinking of you

               

              carpe diem

               

              Lesley

              • May 18, 2012 at 6:54 pm
              Nan in Nebraska
              Participant

                Hi Esther,

                I've been thinking about you. As much as we'd like to see the lesions DISAPPER, I guess stable is good. I have heard of a few others who had brain lesions show up after starting Ipi.     Jonathan, on the Melanoma International board, had a lesion after starting Ipi, had it gamma knifed and has had none since. I truly believe that the Ipi causes an inflammatory response that makes things show up that weren't being picked up on scans yet.    When I had my first scans after my first induction, things were the worst they'd been – new lesions in liver, lots of nodal involvement, etc. I then eventually showed 3 in the liver and the others stablized, until Jan. of this year. I'm now in the middle of my re-induction of Ipi. Like you and Leslie, I would have preferred to have had it a little sooner as there had been some discussion between radiologists (I've had my scans sent back to Dr. Sato since May, 2011). Dr. Sato's group always notes more that my local radiologists. Anyway, I had a large lesion cyberknifed between my first and second Ipi infusion and had my third infusion this past Wed. The radiologist did CT's of the abdomin this past Tue. and even though the lesion was larger, he said there was necrosis in the center and he expected it to shrink. But, other areas in my mysenteri and abdomin were also increased. I'm not really surprised at that though. I think I will just have to wait until my 16-24 wk. scans to really so how things go. Jonathan said his doctor had said he felt re-induction usually followed a similar pattern as the first course. Guess we'll see.

                At least you are feeling good and that is something to be thankful for. Take care and keep us posted. I'll be thinking of you.

                Warm wishes,

                Nan in Nebraska

                  • May 22, 2012 at 7:15 pm
                  edamaser
                  Participant

                    Hi Nan & Lesley,

                    Thank you both for your comments.  I too have noticed the frequency of brain mets after ipi.  Lesley, do you understand the functioning of the immune system vis a vis the blood-brain barrier?  I understand the inflammation hypothesis, but it makes no sense that people who do not get ipi go on forever w/o brain mets, while those who get ipi tend to have them.  That is, if the brain mets are inflammation because of ipi of micro mets, then they should eventually flourish and manifest themselves on scans whether one has had ipi or not.  ????

                    I wonder if it's worth looking for a doc who has a more aggressive approach, who would prescribe a reinduction of ipi before progression, rather than after.  This disease takes up all one's time!!!

                    Tomorrow I'm off to Moffitt to see radiologists about the brain radiation. 

                    Yes, I am so lucky that I still feel well.

                    Luck to you and everyone else out there.

                    Esther

                    • May 22, 2012 at 7:15 pm
                    edamaser
                    Participant

                      Hi Nan & Lesley,

                      Thank you both for your comments.  I too have noticed the frequency of brain mets after ipi.  Lesley, do you understand the functioning of the immune system vis a vis the blood-brain barrier?  I understand the inflammation hypothesis, but it makes no sense that people who do not get ipi go on forever w/o brain mets, while those who get ipi tend to have them.  That is, if the brain mets are inflammation because of ipi of micro mets, then they should eventually flourish and manifest themselves on scans whether one has had ipi or not.  ????

                      I wonder if it's worth looking for a doc who has a more aggressive approach, who would prescribe a reinduction of ipi before progression, rather than after.  This disease takes up all one's time!!!

                      Tomorrow I'm off to Moffitt to see radiologists about the brain radiation. 

                      Yes, I am so lucky that I still feel well.

                      Luck to you and everyone else out there.

                      Esther

                      • May 22, 2012 at 7:15 pm
                      edamaser
                      Participant

                        Hi Nan & Lesley,

                        Thank you both for your comments.  I too have noticed the frequency of brain mets after ipi.  Lesley, do you understand the functioning of the immune system vis a vis the blood-brain barrier?  I understand the inflammation hypothesis, but it makes no sense that people who do not get ipi go on forever w/o brain mets, while those who get ipi tend to have them.  That is, if the brain mets are inflammation because of ipi of micro mets, then they should eventually flourish and manifest themselves on scans whether one has had ipi or not.  ????

                        I wonder if it's worth looking for a doc who has a more aggressive approach, who would prescribe a reinduction of ipi before progression, rather than after.  This disease takes up all one's time!!!

                        Tomorrow I'm off to Moffitt to see radiologists about the brain radiation. 

                        Yes, I am so lucky that I still feel well.

                        Luck to you and everyone else out there.

                        Esther

                      • May 18, 2012 at 6:54 pm
                      Nan in Nebraska
                      Participant

                        Hi Esther,

                        I've been thinking about you. As much as we'd like to see the lesions DISAPPER, I guess stable is good. I have heard of a few others who had brain lesions show up after starting Ipi.     Jonathan, on the Melanoma International board, had a lesion after starting Ipi, had it gamma knifed and has had none since. I truly believe that the Ipi causes an inflammatory response that makes things show up that weren't being picked up on scans yet.    When I had my first scans after my first induction, things were the worst they'd been – new lesions in liver, lots of nodal involvement, etc. I then eventually showed 3 in the liver and the others stablized, until Jan. of this year. I'm now in the middle of my re-induction of Ipi. Like you and Leslie, I would have preferred to have had it a little sooner as there had been some discussion between radiologists (I've had my scans sent back to Dr. Sato since May, 2011). Dr. Sato's group always notes more that my local radiologists. Anyway, I had a large lesion cyberknifed between my first and second Ipi infusion and had my third infusion this past Wed. The radiologist did CT's of the abdomin this past Tue. and even though the lesion was larger, he said there was necrosis in the center and he expected it to shrink. But, other areas in my mysenteri and abdomin were also increased. I'm not really surprised at that though. I think I will just have to wait until my 16-24 wk. scans to really so how things go. Jonathan said his doctor had said he felt re-induction usually followed a similar pattern as the first course. Guess we'll see.

                        At least you are feeling good and that is something to be thankful for. Take care and keep us posted. I'll be thinking of you.

                        Warm wishes,

                        Nan in Nebraska

                        • May 18, 2012 at 6:54 pm
                        Nan in Nebraska
                        Participant

                          Hi Esther,

                          I've been thinking about you. As much as we'd like to see the lesions DISAPPER, I guess stable is good. I have heard of a few others who had brain lesions show up after starting Ipi.     Jonathan, on the Melanoma International board, had a lesion after starting Ipi, had it gamma knifed and has had none since. I truly believe that the Ipi causes an inflammatory response that makes things show up that weren't being picked up on scans yet.    When I had my first scans after my first induction, things were the worst they'd been – new lesions in liver, lots of nodal involvement, etc. I then eventually showed 3 in the liver and the others stablized, until Jan. of this year. I'm now in the middle of my re-induction of Ipi. Like you and Leslie, I would have preferred to have had it a little sooner as there had been some discussion between radiologists (I've had my scans sent back to Dr. Sato since May, 2011). Dr. Sato's group always notes more that my local radiologists. Anyway, I had a large lesion cyberknifed between my first and second Ipi infusion and had my third infusion this past Wed. The radiologist did CT's of the abdomin this past Tue. and even though the lesion was larger, he said there was necrosis in the center and he expected it to shrink. But, other areas in my mysenteri and abdomin were also increased. I'm not really surprised at that though. I think I will just have to wait until my 16-24 wk. scans to really so how things go. Jonathan said his doctor had said he felt re-induction usually followed a similar pattern as the first course. Guess we'll see.

                          At least you are feeling good and that is something to be thankful for. Take care and keep us posted. I'll be thinking of you.

                          Warm wishes,

                          Nan in Nebraska

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