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

AprilandChuck's picture
AprilandChuck
Posts: 104
Joined: Feb 2013

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!

mrs_blkjak's picture
mrs_blkjak
Posts: 92
Joined: Apr 2013

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

alice124's picture
alice124
Posts: 881
Joined: Mar 2012

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!)

I am alive
Posts: 229
Joined: Jul 2012

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.

Djinnie's picture
Djinnie
Posts: 914
Joined: Apr 2013

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

 

Djinnie x

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

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

BDS's picture
BDS
Posts: 106
Joined: Aug 2012

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

foxhd's picture
foxhd
Posts: 2066
Joined: Oct 2011

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's picture
GSRon
Posts: 1306
Joined: Jan 2013

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

Be Well All..!!!

Ron

LynnLuc's picture
LynnLuc
Posts: 24
Joined: Sep 2010

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's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

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's picture
LynnLuc
Posts: 24
Joined: Sep 2010

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's picture
Darron
Posts: 242
Joined: Jun 2013

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!

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