Almost NED
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.

Almost NED

› Forums › General Melanoma Community › Almost NED

  • Post
    • July 18, 2017 at 5:25 pm
    sister of patient
    Participant

    Hey all – we've had great news today to share, CT last week and results today are astounding. While onc won't say NED, we're just about there insomuch as splenic lesions appear to have resolved and last remaining liver met is gone. There's a couple of little things lighting up that they want to watch (2 new tiny spots, one in each lung but they could be anything and what is likely scarring in the spleen) so, yeah, it seems the monster is just about spent.

    Onc did admit today that Leisa's tumour burden was just about the heaviest she had ever dealt with to have such a successful outcome – we kind of suspected that. She will continue Nivo for another 3 months and of course, have ongoing scans but also received a schedule now to start a slow taper from the steroids too.

    So, it's a great day for us here (for some reason I can't stop crying – tears of joy though!!) and I sincerely wish everyone on here still suffering will soon get similar results and news!!

    Best wishes to all!

    Barb

     

Viewing 9 reply threads
  • Replies
      • July 18, 2017 at 6:18 pm
      Nicklindner
      Participant

      That is incredible Barb!  Thank you for sharing this amazing news with us. 

      Anything special that you guys did?  Diet, complimentary treatment, etc?

        • July 18, 2017 at 9:58 pm
        sister of patient
        Participant

        Thank you! No, she really didn't do anything special diet-wise (couldn't really eat much for close to a year) but made sure to get yogurt in there as much as possible, takes turmeric daily and eliminated as much sugar as possible. There was no other complementary treatment, no surgery (here, Canada, they are really loathe to cut). Best wishes to you Anon! 

      • July 18, 2017 at 8:24 pm
      jennunicorn
      Participant

      So happy to hear this Barb! Can't wait until your sister can officially say NED!

        • July 18, 2017 at 9:59 pm
        sister of patient
        Participant

        Thank you Jenn, so much!!! Can't wait 'til you hear it too!!!

        Our best to you, always!!

        Barb

      • July 18, 2017 at 8:27 pm
      Newmanbell
      Participant
      I just love posts like these, gives me hope for my husband. Congratulations.
      Donna
        • July 18, 2017 at 10:02 pm
        sister of patient
        Participant

        Thank you Donna! Our best wishes for complete success going out to you and your husband!!

        Barb

      • July 18, 2017 at 10:05 pm
      sister of patient
      Participant

      P.S. – We are celebrating tonight and breaking the "sugar rule" – grabbed an icecream cake from DQ and my sister had them write on it "F U cancer!" 🙂

      • July 19, 2017 at 7:35 am
      Jubes
      Participant

      Wonderful news. Maybe some champagne to go with the ice cream cake!

        • July 19, 2017 at 11:08 pm
        sister of patient
        Participant

        Thank you Anne-Louise!! We did have a little shot of liqueur with it 🙂 Take care!

        Barb

      • July 19, 2017 at 7:36 am
      Jubes
      Participant

      Wonderful news. Maybe some champagne to go with the ice cream cake!

      • July 19, 2017 at 1:04 pm
      jenny22
      Participant

      Congratulations Barb….wonderful news for your sister.  I love her message on the ice cream cake!!!

      Enjoy the good news, and cant wait until you can say NED.

       

      Best,

      jenny

        • July 19, 2017 at 11:12 pm
        sister of patient
        Participant

        Thanks so much Jenny and I'm glad you liked her message – that was daring for my prim & proper, schoolteacher sister, LOL. We can't wait for the official word either – it will almost be anti-climactic when it comes 🙂 Our best to you!

        Barb

      • July 19, 2017 at 1:04 pm
      jenny22
      Participant

      Congratulations Barb….wonderful news for your sister.  I love her message on the ice cream cake!!!

      Enjoy the good news, and cant wait until you can say NED.

       

      Best,

      jenny

      • July 19, 2017 at 1:13 pm
      ToddG
      Participant

      Fantastic news!  Always great reading about this kind of progress, giving hope to the rest of us!

       

      Todd

        • July 19, 2017 at 11:21 pm
        sister of patient
        Participant

        Thank you so much Todd!! And may the treatment keep kicking ass for you too!!! Best wishes for that continued success!!

        Barb 

      • July 19, 2017 at 6:53 pm
      DZnDef
      Participant

      Hey Barb, I cannot adequately express how thrilled I am for you and your sister.  Congratulations!  Enjoy the cake!  Relax and let the worry melt away.

      Cheers!

      Maggie

        • July 19, 2017 at 11:32 pm
        sister of patient
        Participant

        Ahhh – thank you so much Maggie! It is easier said than done for sure (the relax and not worry part) as you mentioned recently!! But we're thrilled to be where we are today and we are enjoying the cake 🙂 I'm going to be watching for your official "clear" too – may the next scan be it!!! Best thoughts for you always!!

        Barb

Viewing 9 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