12 week Ipi Scan Results…
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12 week Ipi Scan Results…

› Forums › General Melanoma Community › 12 week Ipi Scan Results…

  • Post
    • December 19, 2012 at 6:07 pm
    Erinmay22
    Participant

     

     

    Got my scan results. As my doctor said 'basically everything looks ok'. Except that a lymph node they were unable to remove during surgery has grown. Ipi can take awhile to kick in, right?   
     
    Next steps – being referred to the immunotherapy team at Sloan to try and get started on the anti-pd1 trial in January. Will share more details about that trial once I get more info!  
     
    The last 2 trials I tried to get in to didn't work out (meaning I didn't get in).  I was too far past the date with the Ipi trial in Jan 2011 since they had to biopsy lung nodules.  Then after lung nodules confirmed melanoma in Mar '11 I tried to get in to the braf trial.  When they scanned again in Apr everything was gone and I couldn't get in to the trial…  and then within 6 months both were fda approved!  Let's see if a 3rd time of trying to get in a trial is the charm?  One can dream, right?  🙂  Now if I could only get my anxiety under control!  lol!
     
    Happy Holidays Everyone!
    Erin
Viewing 8 reply threads
  • Replies
      • December 19, 2012 at 7:07 pm
      POW
      Participant

      "Everything looks OK" sounds like a great result to me! Congratulations! And, yes, the postive effects of all of these immune-based treatments can continue to accrue for many months after the treatment stops. Optimism is definitely warranted.

      Good luck with the anti-Pd-1 trial. Keep us posted.

      • December 19, 2012 at 7:07 pm
      POW
      Participant

      "Everything looks OK" sounds like a great result to me! Congratulations! And, yes, the postive effects of all of these immune-based treatments can continue to accrue for many months after the treatment stops. Optimism is definitely warranted.

      Good luck with the anti-Pd-1 trial. Keep us posted.

      • December 19, 2012 at 7:07 pm
      POW
      Participant

      "Everything looks OK" sounds like a great result to me! Congratulations! And, yes, the postive effects of all of these immune-based treatments can continue to accrue for many months after the treatment stops. Optimism is definitely warranted.

      Good luck with the anti-Pd-1 trial. Keep us posted.

      • December 19, 2012 at 10:59 pm
      vivian
      Participant

      Hi Erin,

      Wow, your scan results sound really promising – so glad!  Now, surely it is your turn to get into a trial.  When I see Dr. Wolchok tomorrow, I will remind him of that – lol!

      Keep up the wonderful healing work and have a happy and peaceful holiday.  

      Holding you in the light,

      Lear

      • December 19, 2012 at 10:59 pm
      vivian
      Participant

      Hi Erin,

      Wow, your scan results sound really promising – so glad!  Now, surely it is your turn to get into a trial.  When I see Dr. Wolchok tomorrow, I will remind him of that – lol!

      Keep up the wonderful healing work and have a happy and peaceful holiday.  

      Holding you in the light,

      Lear

        • December 20, 2012 at 2:43 pm
        Erinmay22
        Participant

        Lear  – yes everything looks good is a good response.  Of course I wanted a "everything is clear' but no new tumors and nothing in the brain is a win I guess, right?  Plus the lymph node details states: again containing central low attenuation consistent with necrosis…  so maybe that's a sign it's dying off?  

        Vivian – you see Dr W?  are you in his anti-pd1 trial?  (Sorry didn't look at your profile yet).  yes, I hope to hear from them today or tomorrow about getting appointments set up to get paperwork started for the trial.  I am supposed to see my oncologist tomorrow after I get a nerve test (EMG) done with Dr Chen.  Then hopefully no more appointments for the rest of the year…  I need a mental health break from the last few weeks of worry.  

        Happy Holidays!!

        Erin

        • December 20, 2012 at 2:43 pm
        Erinmay22
        Participant

        Lear  – yes everything looks good is a good response.  Of course I wanted a "everything is clear' but no new tumors and nothing in the brain is a win I guess, right?  Plus the lymph node details states: again containing central low attenuation consistent with necrosis…  so maybe that's a sign it's dying off?  

        Vivian – you see Dr W?  are you in his anti-pd1 trial?  (Sorry didn't look at your profile yet).  yes, I hope to hear from them today or tomorrow about getting appointments set up to get paperwork started for the trial.  I am supposed to see my oncologist tomorrow after I get a nerve test (EMG) done with Dr Chen.  Then hopefully no more appointments for the rest of the year…  I need a mental health break from the last few weeks of worry.  

        Happy Holidays!!

        Erin

        • December 21, 2012 at 12:40 am
        vivian
        Participant

        Erin, I am not in the anti-pd1 trial.  I have been seeing Dr. Wolchok every three months – he is my melanoma specialist, as we don't have one of his level here in Delaware.  He is just wonderful, don't you think?  When you get a chance to look at my profile, you will remember that you and I have a very similar melanoma beginning.  Last month I had a single lung met removed by VATs and hopefully have returned to NED status.  That little nodule was first visible more than a year ago but didn't begin to grow much until  August or so.  I have now been stage 4 for over a year with just that little lung progression and one other tiny in-transit met.  They say that's a good sign, so I am going with that idea.  

        You are right, I think, that "necrosis" means dying off – that should be very good!

        Happy, peaceful holidays to you.

        Lear

        • December 21, 2012 at 12:40 am
        vivian
        Participant

        Erin, I am not in the anti-pd1 trial.  I have been seeing Dr. Wolchok every three months – he is my melanoma specialist, as we don't have one of his level here in Delaware.  He is just wonderful, don't you think?  When you get a chance to look at my profile, you will remember that you and I have a very similar melanoma beginning.  Last month I had a single lung met removed by VATs and hopefully have returned to NED status.  That little nodule was first visible more than a year ago but didn't begin to grow much until  August or so.  I have now been stage 4 for over a year with just that little lung progression and one other tiny in-transit met.  They say that's a good sign, so I am going with that idea.  

        You are right, I think, that "necrosis" means dying off – that should be very good!

        Happy, peaceful holidays to you.

        Lear

        • December 24, 2012 at 6:35 pm
        Erinmay22
        Participant

        Lear – I really wanted to Dr W as my regular oncologist.  I really like my current one… but orginally Dr W was who I requested.  2 years ago today he took the time to email me back on Christmas eve about treatment options and getting an appointment at Sloan.  He stated he was on vacation even – I told him to enjoy his time!  but very much appreciated the time he took to email me back.  My onc at sloan has never even offered up his email address…  so I always have to call in or leave a message thru the portal.  

        I'll look at your profile closer!  sounds like we do have very similar beginnings.  Who removed your lung nodule?  I had Dr Rizk! that was in March of '11.  I was clear for a year and half before the intestine spot showed up.  I kind of wonder if that happen becuase I got the flu so bad last year and there were only so many things my body could fit off at once?  

        And yes hoping necrosis is a good sign it's dying… now just need it to shrink!!!  but still happy no other 'spots' have shown up!  

        Have a very blessed Christmas!

        Erin

        • December 24, 2012 at 6:35 pm
        Erinmay22
        Participant

        Lear – I really wanted to Dr W as my regular oncologist.  I really like my current one… but orginally Dr W was who I requested.  2 years ago today he took the time to email me back on Christmas eve about treatment options and getting an appointment at Sloan.  He stated he was on vacation even – I told him to enjoy his time!  but very much appreciated the time he took to email me back.  My onc at sloan has never even offered up his email address…  so I always have to call in or leave a message thru the portal.  

        I'll look at your profile closer!  sounds like we do have very similar beginnings.  Who removed your lung nodule?  I had Dr Rizk! that was in March of '11.  I was clear for a year and half before the intestine spot showed up.  I kind of wonder if that happen becuase I got the flu so bad last year and there were only so many things my body could fit off at once?  

        And yes hoping necrosis is a good sign it's dying… now just need it to shrink!!!  but still happy no other 'spots' have shown up!  

        Have a very blessed Christmas!

        Erin

        • December 24, 2012 at 6:35 pm
        Erinmay22
        Participant

        Lear – I really wanted to Dr W as my regular oncologist.  I really like my current one… but orginally Dr W was who I requested.  2 years ago today he took the time to email me back on Christmas eve about treatment options and getting an appointment at Sloan.  He stated he was on vacation even – I told him to enjoy his time!  but very much appreciated the time he took to email me back.  My onc at sloan has never even offered up his email address…  so I always have to call in or leave a message thru the portal.  

        I'll look at your profile closer!  sounds like we do have very similar beginnings.  Who removed your lung nodule?  I had Dr Rizk! that was in March of '11.  I was clear for a year and half before the intestine spot showed up.  I kind of wonder if that happen becuase I got the flu so bad last year and there were only so many things my body could fit off at once?  

        And yes hoping necrosis is a good sign it's dying… now just need it to shrink!!!  but still happy no other 'spots' have shown up!  

        Have a very blessed Christmas!

        Erin

        • December 21, 2012 at 12:40 am
        vivian
        Participant

        Erin, I am not in the anti-pd1 trial.  I have been seeing Dr. Wolchok every three months – he is my melanoma specialist, as we don't have one of his level here in Delaware.  He is just wonderful, don't you think?  When you get a chance to look at my profile, you will remember that you and I have a very similar melanoma beginning.  Last month I had a single lung met removed by VATs and hopefully have returned to NED status.  That little nodule was first visible more than a year ago but didn't begin to grow much until  August or so.  I have now been stage 4 for over a year with just that little lung progression and one other tiny in-transit met.  They say that's a good sign, so I am going with that idea.  

        You are right, I think, that "necrosis" means dying off – that should be very good!

        Happy, peaceful holidays to you.

        Lear

        • December 20, 2012 at 2:43 pm
        Erinmay22
        Participant

        Lear  – yes everything looks good is a good response.  Of course I wanted a "everything is clear' but no new tumors and nothing in the brain is a win I guess, right?  Plus the lymph node details states: again containing central low attenuation consistent with necrosis…  so maybe that's a sign it's dying off?  

        Vivian – you see Dr W?  are you in his anti-pd1 trial?  (Sorry didn't look at your profile yet).  yes, I hope to hear from them today or tomorrow about getting appointments set up to get paperwork started for the trial.  I am supposed to see my oncologist tomorrow after I get a nerve test (EMG) done with Dr Chen.  Then hopefully no more appointments for the rest of the year…  I need a mental health break from the last few weeks of worry.  

        Happy Holidays!!

        Erin

      • December 19, 2012 at 10:59 pm
      vivian
      Participant

      Hi Erin,

      Wow, your scan results sound really promising – so glad!  Now, surely it is your turn to get into a trial.  When I see Dr. Wolchok tomorrow, I will remind him of that – lol!

      Keep up the wonderful healing work and have a happy and peaceful holiday.  

      Holding you in the light,

      Lear

      • December 21, 2012 at 2:51 am
      Tina D
      Participant

      This sounds like a pretty encouraging report… Dr Linette said that most definitely it can take ipi some time to kick in.

      Now, I am hoping you can rest a bit, and enjoy a break for the holidays 🙂

      Tina

      • December 21, 2012 at 2:51 am
      Tina D
      Participant

      This sounds like a pretty encouraging report… Dr Linette said that most definitely it can take ipi some time to kick in.

      Now, I am hoping you can rest a bit, and enjoy a break for the holidays 🙂

      Tina

        • December 24, 2012 at 6:38 pm
        Erinmay22
        Participant

        Tina – yes glad that nothing else has popped up!  and yes I've heard with ipi things can get worse before they get better… hoping that is the case with me?  also trying to get in the anti-pd1 trial…  will see how that goes!  Meeting with them on Jan 8th!  It's nice though to go a few weeks without appointments.  I think that just adds to my anxiety!  🙂

        Have a great Christmas!

        Erin

        • December 24, 2012 at 6:38 pm
        Erinmay22
        Participant

        Tina – yes glad that nothing else has popped up!  and yes I've heard with ipi things can get worse before they get better… hoping that is the case with me?  also trying to get in the anti-pd1 trial…  will see how that goes!  Meeting with them on Jan 8th!  It's nice though to go a few weeks without appointments.  I think that just adds to my anxiety!  🙂

        Have a great Christmas!

        Erin

        • December 24, 2012 at 6:38 pm
        Erinmay22
        Participant

        Tina – yes glad that nothing else has popped up!  and yes I've heard with ipi things can get worse before they get better… hoping that is the case with me?  also trying to get in the anti-pd1 trial…  will see how that goes!  Meeting with them on Jan 8th!  It's nice though to go a few weeks without appointments.  I think that just adds to my anxiety!  🙂

        Have a great Christmas!

        Erin

      • December 21, 2012 at 2:51 am
      Tina D
      Participant

      This sounds like a pretty encouraging report… Dr Linette said that most definitely it can take ipi some time to kick in.

      Now, I am hoping you can rest a bit, and enjoy a break for the holidays 🙂

      Tina

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