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Scans show I’m still NED!!!!

Forums General Melanoma Community Scans show I’m still NED!!!!

  • Post
    Kim K
    Participant

    I also got a firm comitment on 6 month PET/CT whole body & brain MRI with and without contrast.  I go back in July unless anything pops up in the meantime.

    I also got a firm comitment on 6 month PET/CT whole body & brain MRI with and without contrast.  I go back in July unless anything pops up in the meantime.

    I also had to make sure they don't pull the "we can't give you your results over the phone and the Dr. is gone for the day" crap.  My doc was shocked when he heard they wouldn't tell me my results over the phone.  We already had a deal that it is fine to do so.  I mean it's not like because I am in medicine therefore I am being a pain, but rather, if there was something I would want to know everything PRIOR to my appt. so I can spend the time constructively developing a game plan that made sense.  I could spend the time more productively and have my questions lined up and research done PRIOR to my appt.  It didn't help that the receptionist at this particular branch office isn't the brightest crayon in the box…..

    I will recheck next week to ensure that it is the first thing that shows up is my Dr.'s consent to read me my results over the phone and or fax them to me as soon as they are reported.  Damn stupid beuracracy.  My doc did get a chuckle out of my Mela-sucka-noma shirt.  (The one that BG has).

    I also ran into my lung surgeon who seemed a little suprised I was still doing well.  If only I could be a fly on the wall at the next tumor board meeting…..

    I also can't wait for my new Sole 35 eliptical machine.  Now that I will be around for a while more, I guess I need to get my butt back in shape.  Jade my 5 y/o daughter insists Mommy is only fluffy and not fat.

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      Fen
      Participant

      absolutely phenomenal news! wishing you many miles of eliptical-ing!

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      Fen
      Participant

      absolutely phenomenal news! wishing you many miles of eliptical-ing!

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      lhaley
      Participant

      Fantastic news!!!!  

      It's ashame that your lung surgeon didn't realize that there is hope and surgery alone can work for many!!  Maybe now he will learn from you and become more aggressive without patients doing the asking!!

      Fluffy is ok, but it doesn't hurt to start working out.

      Enjoy, enjoy, enjoy!!!!!

      Linda

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      lhaley
      Participant

      Fantastic news!!!!  

      It's ashame that your lung surgeon didn't realize that there is hope and surgery alone can work for many!!  Maybe now he will learn from you and become more aggressive without patients doing the asking!!

      Fluffy is ok, but it doesn't hurt to start working out.

      Enjoy, enjoy, enjoy!!!!!

      Linda

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      KatyWI
      Participant

      Rock and roll Kim, I am overjoyed!!!!!  Great news!  Can you hear the cheering from Wisconsin, where it's four degrees?

      KatyWI

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      KatyWI
      Participant

      Rock and roll Kim, I am overjoyed!!!!!  Great news!  Can you hear the cheering from Wisconsin, where it's four degrees?

      KatyWI

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      filbert
      Participant

      AT times like this you want to say "who pays the bills for all this fancy diagnostic equipment around here anyway…..please give me my results."   You want time to be prepared and have an intelligent conversation with the doctor when you see him.  Good luck and I also like the shirt.

       

      Phil

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      filbert
      Participant

      AT times like this you want to say "who pays the bills for all this fancy diagnostic equipment around here anyway…..please give me my results."   You want time to be prepared and have an intelligent conversation with the doctor when you see him.  Good luck and I also like the shirt.

       

      Phil

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      debbieVA
      Participant

      Hi Kim…

       

      That is terrific news….Love to hear success stories… God bless….

       

      Debbie Stage 4 NED (2006)

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      debbieVA
      Participant

      Hi Kim…

       

      That is terrific news….Love to hear success stories… God bless….

       

      Debbie Stage 4 NED (2006)

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      MaryD
      Participant

      Wow – that's great news Kim – Congrulations!  And yeah, you're going to be enjoying that new eliptical machine for some time to come!

      Good for you for managing "the system" and mandating what you want and getting a scan schedule in place.   And you can tell your lung surgeon there are quite a few of us (me included) running around living life after having lung mets removed!

      Enjoy!

       

      Mary

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      MaryD
      Participant

      Wow – that's great news Kim – Congrulations!  And yeah, you're going to be enjoying that new eliptical machine for some time to come!

      Good for you for managing "the system" and mandating what you want and getting a scan schedule in place.   And you can tell your lung surgeon there are quite a few of us (me included) running around living life after having lung mets removed!

      Enjoy!

       

      Mary

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      NancyD
      Participant

      What great news this is!  The magic words, NED!  Better yet, STILL NED!!!  

      Nancy D

      Stage 3B

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      NancyD
      Participant

      What great news this is!  The magic words, NED!  Better yet, STILL NED!!!  

      Nancy D

      Stage 3B

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      What great news Kim!  I have been awaiting your news and this is the best possible,  Yippee!

      Has it been determined that you are a "complete" responder or does that title come after 2-3 years out? 

      Congratulations on getting your scan schedule in place too, a reassuring check on things.  Have fun on your exercise machine.  I think I am going to check out a gym tomorrow.  I really miss the group aerobics classes.  Since moving here nothing has seemed "normal" so my goal is to start making that happen. 

      Oh I am so excited for you!

      Take care,

      Shelly stage IV, 7+ months on Roche b-raf trial

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      What great news Kim!  I have been awaiting your news and this is the best possible,  Yippee!

      Has it been determined that you are a "complete" responder or does that title come after 2-3 years out? 

      Congratulations on getting your scan schedule in place too, a reassuring check on things.  Have fun on your exercise machine.  I think I am going to check out a gym tomorrow.  I really miss the group aerobics classes.  Since moving here nothing has seemed "normal" so my goal is to start making that happen. 

      Oh I am so excited for you!

      Take care,

      Shelly stage IV, 7+ months on Roche b-raf trial

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        Tracy Chicago
        Participant

        Congratulations! I love hearing good news!

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        Tracy Chicago
        Participant

        Congratulations! I love hearing good news!

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      dawn dion
      Participant

      That is AWESOME!!!! Yea for you!  Where can i get one of those great shirts.

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      dawn dion
      Participant

      That is AWESOME!!!! Yea for you!  Where can i get one of those great shirts.

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      JakeinNY
      Participant

      Congratulations Kim.

      Best wishes for a long life.

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      JakeinNY
      Participant

      Congratulations Kim.

      Best wishes for a long life.

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      Hawaii Bob
      Participant

      That's great news Kim….. I'm so happy for you and your daughters !

       

      Aloha,

      Hawaii Bob

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      Hawaii Bob
      Participant

      That's great news Kim….. I'm so happy for you and your daughters !

       

      Aloha,

      Hawaii Bob

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      ad2424
      Participant

      Hi Kim

      I read your profile and have some questions.

      I am stage 4 NED and trying to decide to wait and watch or do a trial (most prob Weber PD 1 in FL or GM-CSF off label).

      What drugs were used in your 02-06 trial?

      Why did you choose to do IL2/INF (sorry, forgot what you used) most recently if you were NED?

      Thanks.

      Steven ([email protected])

       

       

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      ad2424
      Participant

      Hi Kim

      I read your profile and have some questions.

      I am stage 4 NED and trying to decide to wait and watch or do a trial (most prob Weber PD 1 in FL or GM-CSF off label).

      What drugs were used in your 02-06 trial?

      Why did you choose to do IL2/INF (sorry, forgot what you used) most recently if you were NED?

      Thanks.

      Steven ([email protected]com)

       

       

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