Josh from Kansas - Dx Sep 2012

[D.ap]

Lynette

Yo , yo, yo! what up!?!?! =Hey
I wanted to share my kids short cut, above ,with my iPhone short cut
They were "looking "at my phone and ADDED the short cut

Josh is weighing in TODAY as 110!
Are goal is 120 by Jan 2017
Thank you Lynette for the well wishes
Love
Debbie

[jcs2007]

Debbie, thanks for sharing the info on opdivo med and glad his cough has improved. Also, hoping he is able to gain weight over the holidays!! Cindy

[D.ap]

Hi Cindy
So Kind..Your message
Love to you Sam and family
Today and always

[D.ap]

Hello all

Scans have been taken
2 Ct scans lungs and pelvic today
MRI yesterday
Thursday onc meeting

Will update
Love to all
Will let you know

[jenhy168]

Hoping for good results

<3

[arojussi]

I hope for good response. Have best of luck.

[D.ap]

Dear all
I just don't know where to begin ..
We are so incredibly happy !!

October 31, 2016 compared to Jan 24,2017.

Adrenal gland 2cm prior, --1.1cm
Liver previously 1.9, --9mm
Lesicion inferioly to gall bladder 3.1 to 1.3cm
And the best for last all brain lescions, except the LITT treated ,resolved ! Even the bone right frontal lobe !

Many thanks for all your messages and I'll write more later as I'm tearing up as the lung tumors reduction has happened too!

Love to all
Debbie

[Bonni Hess]

Dear Debbie,
WOW, WOW, WOW!!! I am sharing your happy tears and the immense happiness and great relief that Josh's incredibly good, wonderful, and encouraging scan results have brought!!! Thank you for your joyful sharing and for bringing the bright light of strengthened Hope for Opdivo treatment success to all of us in this ASPS Community. CELEBRATE!!!, and have a well deserved, and I know much needed, very relaxing and joy filled weekend .
With happiest hugs and thoughts for all of you, special wishes for dear Josh's continued healing and incredible treatment success, much love, and continued Hope,
Bonni

[ntran727]

Debbie and Josh,

I am so extremely happy to hear the good news and so so glad that the medication is working. I was just about to post my updates too

How long until his next scans? I am assuming he will stay on the current medication/dosage? How is he tolerating the side effects if any?

[Olga]

Deb - it is a super good news to hear! Post the lung mets/chest CT scan update too please as you are able. And repost everything systematically to the Opdivo forum. Do you see any locations that are not responding? Did I get it right and there is a bone response - in a bone right frontal lobe as you said?

I am sure that the OPDIVO (nivolumab) maker Bristol-Myers Squibb Company is interested in the drug activity in sarcomas - is the doctor reporting the results to them - as I remember there is some special arrangement was done for off label drug? I am just wondering if these data stats are getting collected somehow? There is an updated Opdivo safety leaflet from the Bristol-Myers Squibb Company (updated 17/01 as far as I can see):
http://www.opdivo.com/

[D.ap]

Hi Olga

Dr. Powers made it very clear he will
1) thank the Pharmaceutical company and board on our behalf
2) contact NIH to present Joshua's case

3) consider a molecular profile by way of blood and or the tissues that we have from various surgeries and or procedures
He is truly as excited as we are and hopes to benefit others with sarcomas, with Joshua's present response to Opdivo case .

[Olga]

Deb, what about the newly discovered liver mets when Josh just started Opdivo that we were wondering about what they were? Are they there or not?

[D.ap]

Olga
I've been without our main computer/ office since late December after a pipe burst. I have every thing EVERY WHERE
I'm trying to scout and make sure that I'm not missing the lower pelvic focus and quite frankly I have that same question .
Maybe Nhi can answer a question to me
Will a same radiological center call the liver the lung on a CT scan?
It's 3 dimensial or 2?

There is no new tumors currently, but a previous reffered to the Jan 24 report, a slight increase of 4 mm on the liver .

[Olga]

Deb - this is from your post (Sun Nov 06, 2016 3:23 pm) here after the previous scans:

1. overall worsening of metastatic disease in liver. Several new liver lesions are identified 19 mm and 10 mm . Ablated tumor decreased slightly

,
but now we are only talking about one liver met decreased (probably the one that was ablated and keeps getting smaller?). We were discussing these new findings as you were guessing them to be some kind of inflammation response to Opdivo?

[D.ap]

Ok olga
Looking at my scan hard copies
All liver tumors except a new lescion found in oct 2016,
and the cryoblated liver tumor , have shrunk .
I'll post the scan later today .
I think we began prior to the Opdivo start in June , with the ablated liver tumor, and 2 others being found by the extended CT scan.
We are following 4 now.