sorry so long since I posted..update on Chuck the Nivolumab+IPI trial

AprilandChuck
AprilandChuck Member Posts: 110

Sorry its been so long..daughter was home for the summer and we actually got to keep the grandbabies for longer than a few days for the first time in a year..then we took an actual vacation for the first time in 15 years :D was a busy summer..

Okay here goes I am almost afraid to say it...It looks like at least for now as of today Chuck has had an almost complete response..the almost is becausea lymphnode they have been watching stabilized but has not shrunk yet..the radiologist reading the scans called the Dr (he was one who had never read Chucks scans before) and asked if Chuck really had metistatic disease..so the Dr refered him back to Chucks April scans for review...it takes a while for news like to sink in..we are hoping it will be a sustained response because as you know with immunotherapy it sometimes is not..whats next? It looks like possibly a few more doses of Nivolumab ..then he may go off it..because they are afraid with no solid tumors to fight it may turn toxic..then we wait..to see if its sustained..today is a good day!  and hope is a beautiful word..

These drugs offer something that those going through this and their families do not find in the old data..HOPE..we are headed to Tn to see the grandbabies tomorrow..but when we get back I am going to start a letter to the FDA..these drugs need to be approved so more people get access to them! 

Have a wonderful night everyone! Hugggsss

P.s. won't stay away so long this time I promise!

One more thing Dr Amin and his staff are amazing we will never be able to thank them enough! God answers prayers and he led us to a great place!

Comments

  • mrs_blkjak
    mrs_blkjak Member Posts: 103
    That's such great news!

    That's such great news! Keeping my fingers crossed for a sustained response. 

  • alice124
    alice124 Member Posts: 896 Member
    April and Chuck - So happy

    April and Chuck - So happy for you both! I agree with all you say regarding FDA approval allowing more people access and the HOPE reflected in these drugs.

     

    Congratulations.

     

    (And continue to keep Chuck away from the goats!)

  • Djinnie
    Djinnie Member Posts: 945
    That is wonderful news!...I

    That is wonderful news!...I am so pleased for you both! Here's to many, many more good days in the future!

     

    Djinnie x

  • I am alive
    I am alive Member Posts: 315
    alice124 said:

    April and Chuck - So happy

    April and Chuck - So happy for you both! I agree with all you say regarding FDA approval allowing more people access and the HOPE reflected in these drugs.

     

    Congratulations.

     

    (And continue to keep Chuck away from the goats!)

    :)

    April and Chuck, I am so happy to hear about Chuck's success. Mazel Tov and continued good fortune!  What with the grandkids' visit, a real live vacation and this news, you've had a fantastic summer! And you are so right - Chuck's response gives us all hope. I can drift off to sleep tonight with a smile on my face knowing that such responses are, indeed, possible. Thanks for posting.

  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    Djinnie said:

    That is wonderful news!...I

    That is wonderful news!...I am so pleased for you both! Here's to many, many more good days in the future!

     

    Djinnie x

    nivo + ipi trial

    Brilliant news for you two and enormously encouraging for the rest of us!  Please keep the good news coming again soon.

  • BDS
    BDS Member Posts: 172
    Latest Results

    After reading your post all I have to say is  - OH WOW! congraduations - BDS

  • foxhd
    foxhd Member Posts: 3,181 Member
    BDS said:

    Latest Results

    After reading your post all I have to say is  - OH WOW! congraduations - BDS

    New Poster Boy

    That is great!! I believe that I'll do well with the IL-2 because of my time with the MDX. Though I ended up failing, I am so glad for you improvements. This is the right track. Congrats to You!!!!!!!!!

  • GSRon
    GSRon Member Posts: 1,303 Member
    foxhd said:

    New Poster Boy

    That is great!! I believe that I'll do well with the IL-2 because of my time with the MDX. Though I ended up failing, I am so glad for you improvements. This is the right track. Congrats to You!!!!!!!!!

    Great news April and

    Great news April and Chuck.!!  Thanks for sharing such hope...

    Be Well All..!!!

    Ron

  • LynnLuc
    LynnLuc Member Posts: 22
    Great News!

    I was in the Nivolumab trial ( except I had 72 peptide injections as while for 30 monthe. I remain NED for nearly 3 and half years now! It's good news!

  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    LynnLuc said:

    Great News!

    I was in the Nivolumab trial ( except I had 72 peptide injections as while for 30 monthe. I remain NED for nearly 3 and half years now! It's good news!

    Great news indeed!

    That's some going and must raise hopes for everyone with the sneaky disease!    Are you on any further treatment?  It sounds as though there's a good case for considering that you've been 'cured', although not dropping one's guard is still the right  policy for the foreseeable future.

  • LynnLuc
    LynnLuc Member Posts: 22
    further treatment?

    For me I completed two 12 weeks then Nivolumab infusions once every 3 months for 2 years...I now moved from getting scans and blood work from once every 3 months to getting them once every 6 months...No furter treatment is needed so far. I'm am hopeful, but not stupid...since melanoma has never had a cure before...I am just prayful this is mine!-Lynn

  • Darron
    Darron Member Posts: 310 Member
    Fantastic News

    I have been wondering about your progress. What great news, indeed it was a good day!

    I am scheduled for an infusion on Thursday the 29th. Please let me know if you will be aget he hospital, I would love to meet you both in person.

    congratulations in such great news!