Update
REGISTER
The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

Update

› Forums › General Melanoma Community › Update

  • Post
    • July 28, 2015 at 10:09 pm
    Julie in SoCal
    Participant

    Hi there Friends!

    Yesterday I had Pembro infusion #5 and it seems to be working!  When I started this round, I could feel four pea to grape sized in-transits, now I can't find any! Rock Star Doc couldn't find any either (and he's the expert!!!).  So we did the happy dance as he writes NED (no evidence of disease) on my chart again.

    The other news is that my Rock Star Doc has moved to a different hospital and they're still getting everything set up for infusions. Their temporary solution has been to use the VIP rooms–nice, big room to myself, private nurses, coffee or tea, and a TV to watch if I so desired. Rock Star Doc said not to get used to it…that might be difficult wink emoticon

     

     

    Wishing you all NED!

     

     

    Shalom!

     

Viewing 23 reply threads
  • Replies
      • July 28, 2015 at 11:06 pm
      DianaD
      Participant

      Hi, Julie.  I'm new on this forum.  So glad to read about your Happy News!  May it continue….

       

      DianaD

      • July 28, 2015 at 11:06 pm
      DianaD
      Participant

      Hi, Julie.  I'm new on this forum.  So glad to read about your Happy News!  May it continue….

       

      DianaD

      • July 28, 2015 at 11:06 pm
      DianaD
      Participant

      Hi, Julie.  I'm new on this forum.  So glad to read about your Happy News!  May it continue….

       

      DianaD

      • July 28, 2015 at 11:32 pm
      arthurjedi007
      Participant

      Sounds great.

      Artie

      • July 28, 2015 at 11:32 pm
      arthurjedi007
      Participant

      Sounds great.

      Artie

      • July 28, 2015 at 11:32 pm
      arthurjedi007
      Participant

      Sounds great.

      Artie

      • July 28, 2015 at 11:51 pm
      SABKLYN
      Participant

      fabulous!

      • July 28, 2015 at 11:51 pm
      SABKLYN
      Participant

      fabulous!

      • July 28, 2015 at 11:51 pm
      SABKLYN
      Participant

      fabulous!

      • July 29, 2015 at 4:17 am
      DZnDef
      Participant

      Very happy that our Rock Star Doc is doing right by you!  I haven't tried to see him since he relocated.  Did he take your records with him?  Or did you have to sign up like a "new" patient all over again at the new location?  I am really really happy for you, Julie!

      Cheers – Maggie

      • July 29, 2015 at 4:17 am
      DZnDef
      Participant

      Very happy that our Rock Star Doc is doing right by you!  I haven't tried to see him since he relocated.  Did he take your records with him?  Or did you have to sign up like a "new" patient all over again at the new location?  I am really really happy for you, Julie!

      Cheers – Maggie

      • July 29, 2015 at 4:17 am
      DZnDef
      Participant

      Very happy that our Rock Star Doc is doing right by you!  I haven't tried to see him since he relocated.  Did he take your records with him?  Or did you have to sign up like a "new" patient all over again at the new location?  I am really really happy for you, Julie!

      Cheers – Maggie

        • July 29, 2015 at 3:18 pm
        Julie in SoCal
        Participant

        Hi Maggie,

        I brought my records with me, and had them sent over from the other place, but of course the hospital still has all their forms that new patients have to fill out.  

        Julie

        • July 29, 2015 at 3:18 pm
        Julie in SoCal
        Participant

        Hi Maggie,

        I brought my records with me, and had them sent over from the other place, but of course the hospital still has all their forms that new patients have to fill out.  

        Julie

        • July 29, 2015 at 3:18 pm
        Julie in SoCal
        Participant

        Hi Maggie,

        I brought my records with me, and had them sent over from the other place, but of course the hospital still has all their forms that new patients have to fill out.  

        Julie

      • July 29, 2015 at 2:42 pm
      _Paul_
      Participant

      Awesome news Julie! Now let's hope you stay that way!

      – Paul.

      • July 29, 2015 at 2:42 pm
      _Paul_
      Participant

      Awesome news Julie! Now let's hope you stay that way!

      – Paul.

      • July 29, 2015 at 2:42 pm
      _Paul_
      Participant

      Awesome news Julie! Now let's hope you stay that way!

      – Paul.

      • July 29, 2015 at 5:41 pm
      Swanee
      Participant

      I'm so happy to check in and read this post from you!  I've followed you for a very long time and always amazed by what you've been through and how you always come back with new vigor and hope!  Today, is a testament of what hope and believing can do and remaining positive and vigilent no matter how hard the journey gets!  You are an inspiration to all of us Julie and I remain hopeful that better days are finally here for you….God knows how much you deserve this day!  Doing a happy dance for you…..

      Swanee

       

        • July 29, 2015 at 6:54 pm
        liberty04281
        Participant
        It is nice to hear it.
        Good Luck!
        • July 29, 2015 at 6:54 pm
        liberty04281
        Participant
        It is nice to hear it.
        Good Luck!
        • July 29, 2015 at 6:54 pm
        liberty04281
        Participant
        It is nice to hear it.
        Good Luck!
      • July 29, 2015 at 5:41 pm
      Swanee
      Participant

      I'm so happy to check in and read this post from you!  I've followed you for a very long time and always amazed by what you've been through and how you always come back with new vigor and hope!  Today, is a testament of what hope and believing can do and remaining positive and vigilent no matter how hard the journey gets!  You are an inspiration to all of us Julie and I remain hopeful that better days are finally here for you….God knows how much you deserve this day!  Doing a happy dance for you…..

      Swanee

       

      • July 29, 2015 at 5:41 pm
      Swanee
      Participant

      I'm so happy to check in and read this post from you!  I've followed you for a very long time and always amazed by what you've been through and how you always come back with new vigor and hope!  Today, is a testament of what hope and believing can do and remaining positive and vigilent no matter how hard the journey gets!  You are an inspiration to all of us Julie and I remain hopeful that better days are finally here for you….God knows how much you deserve this day!  Doing a happy dance for you…..

      Swanee

       

      • July 30, 2015 at 3:21 am
      JoshF
      Participant

      Great Julie…awesome to hear stories like this!!!!! Keep on; keeping on!!!

        • July 31, 2015 at 2:42 pm
        killmel
        Participant

        Hi Julie,

        Soooooooooooo Happy for your great news!

        Now that your NED, are you going to continue with your infusions? If yes, how long does your Rock Star want you tocontinue with infusions?

         

         

        • July 31, 2015 at 2:42 pm
        killmel
        Participant

        Hi Julie,

        Soooooooooooo Happy for your great news!

        Now that your NED, are you going to continue with your infusions? If yes, how long does your Rock Star want you tocontinue with infusions?

         

         

        • July 31, 2015 at 8:43 pm
        Julie in SoCal
        Participant

        Hi Anon,

        Our plan is for me to do at least a year of Pembro. RS Doc noted that while Pembro seems to be doing the trick for me the question is for how long.  Ipi did the trick too, but within a year Mel was back. So the plan is at least a year of Pembro.  After that who knows?

        Julie

        • July 31, 2015 at 8:43 pm
        Julie in SoCal
        Participant

        Hi Anon,

        Our plan is for me to do at least a year of Pembro. RS Doc noted that while Pembro seems to be doing the trick for me the question is for how long.  Ipi did the trick too, but within a year Mel was back. So the plan is at least a year of Pembro.  After that who knows?

        Julie

        • July 31, 2015 at 8:43 pm
        Julie in SoCal
        Participant

        Hi Anon,

        Our plan is for me to do at least a year of Pembro. RS Doc noted that while Pembro seems to be doing the trick for me the question is for how long.  Ipi did the trick too, but within a year Mel was back. So the plan is at least a year of Pembro.  After that who knows?

        Julie

        • July 31, 2015 at 2:42 pm
        killmel
        Participant

        Hi Julie,

        Soooooooooooo Happy for your great news!

        Now that your NED, are you going to continue with your infusions? If yes, how long does your Rock Star want you tocontinue with infusions?

         

         

      • July 30, 2015 at 3:21 am
      JoshF
      Participant

      Great Julie…awesome to hear stories like this!!!!! Keep on; keeping on!!!

      • July 30, 2015 at 3:21 am
      JoshF
      Participant

      Great Julie…awesome to hear stories like this!!!!! Keep on; keeping on!!!

      • July 31, 2015 at 8:36 pm
      stars
      Participant

      Great news, Julie! You're doc truly does sound like a star (or perhaps you are a star patient of his, too). So good to hear pembro is working its magic,

      Stars

      • July 31, 2015 at 8:36 pm
      stars
      Participant

      Great news, Julie! You're doc truly does sound like a star (or perhaps you are a star patient of his, too). So good to hear pembro is working its magic,

      Stars

      • July 31, 2015 at 8:36 pm
      stars
      Participant

      Great news, Julie! You're doc truly does sound like a star (or perhaps you are a star patient of his, too). So good to hear pembro is working its magic,

      Stars

Viewing 23 reply threads
  • You must be logged in to reply to this topic.
About the MRF Patient Forum

The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

Popular Topics