Joshua on Opdivo-compassionate use

[Bonni Hess]

Dear Debbie, My heart, deepest caring, most positive thoughts, and greatest Hope are with you, Josh, and your family tonight as you go through the scanxiety of waiting to receive Josh's scan results tomorrow. I share your special happiness about his encouraging weight gain during the past six months since beginning his Opdivo treatment and Hope that this is a promising indication of treatment success. I will be anxiously awaiting your update on the scan results when your time allows. Heart to heart with special caring thoughts, healing wishes, love, and continued Hope, Bonni

[D.ap]

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

CT extended chest / pelvic

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

[D.ap]

So CT Chest W/contrast
Comparison October 31,2016 to January 24,2017

Lungs and airways : innumerable bilateral pulmonary nodules noted. There is been significant improvement in size of lesions compared with previous study . Multiple lesicions are resolved. Left upper lobe pulmonary nodule on image #23 measures 0.8cm previously 2cm. One of the left lower lobe pulmonary masses measures 1.9cm previously 5.4cm. A dominant right lower lobe mass measures 2.7cm previously 6.3cm. There is stable scarring in both lower lobes
Pleura: unremarkable . No effusions or pneumothorax
Vessels : unremarkable
Heart: normal size. No pericardial effusion
Lymph Nodes: no significant hilar, mediastinal or aillary lymphadenopathy .
Bones and chest wall: unremarkable .

[Olga]

Deb, thank for the add info re. lungs. What can I say - OMG!!!
No wonder Josh feels better now - lung mets shrunk so much it makes his breathing almost normal now! And the adrenal met shrinking that much would be (probably) accountable for his ability to put on more weight.

[D.ap]

Yes Olga
I agree , OMG!
The 5.4 cm, on the left lower lung ,was the tumor I believe that Dr. Rolle tried to remove laser wise that was border line? He had told the kids that he almost had to wedge the tumor during the procedure .
However we are forever grateful that over 70 others were removed by Dr. Rolle in January of 2013.

All of Joshua's lung tumors back in 2013 were below 1 cm.
And now with Opdivo , not only has there been reduction in the larger tumors, some of the smaller tumors have disappeared .

[D.ap]

Ct ABD/ pelvic with contrast 1/24/17

Compared to 10/31/17-
Abdomen
Liver There is a stable 4.1cm mass in the anterior left lobe liver. The previously described new lesion in the medial segment left lobe liver has decreased in size now measuring 9mm compared to 1.9cm on the previous study.
The dominant lesion seen inferiority just to the gallbladder measures 1.3cm previously 3.1cm. Vague lescion in the right lobe liver on image #22 measures 1.4cm previously 1.1cm

Report
Spleen unremarkable
Adrenals. Nodularity involving the left adrenal gland is improved measuring 1.1cm compared to 2cm on previous
study

Impression
1. Overall improvement in mestatic disease in liver one lescion in right liver lobe is slightly larger however
2. Improvement in left adrenal nodularity

[arojussi]

Happy to hear Josh is doing so well.

[D.ap]

Thank you Jussi

[Bonni Hess]

Dear Debbie, Was Josh given a biomarker PDL-1 test to.determine if he was a candidate for Opdivo prior to beginning his Opdivo treatment, and if so, did he have a positive result to the test? Take care and have a good and relaxing weekend. With special caring thoughts, healing wishes, and continued Hope, Bonni

[D.ap]

Bonni
To answer your question
No. Josh was not tested.
However it would not surprise me if he were to be tested now after such great results .
It's my understanding that with the compassionate use, and the true lack of concenses from the medical field to
A) measure accurately Pd1
B) feel that all cancers respond the same ,
C) to know the range to accept with ASPS,
that we felt the measurement of pdl1 was not important back in June of 2016. What was important were results .

We truly put our faith in our team of doctors as well as our own research and feel so incredibly blessed !

Found this write up from 2015 to be a good explaination of the study of PDL1 concept

To PD-L1 or Not to PD-L1: That Is the Question

https://www.cancercommons.org/knowledge ... -question/

[Bonni Hess]

Thank you for the additional shared information Debbie
I had (apparently mistakenly) thought that bio marker testing for PDL-1 is required before patients can receive PDL-1 treatment. It would certainly be very interesting and beneficial to other patients considering PDL-1 treatment to know if Josh's tumors contain PDL-1, and perhaps this is something which can be explored through tumor tissue testing at some point. With deepest gratitude for your helpful shared information, and with special caring thoughts, healing wishes, and continued Hope, Bonni

[D.ap]

Good morning all

Josh had his 15th infusion on Thursday and weighted in at a wapping 127.2 lbs!

His sleep patterns are still skewed but he is working on creating normal schedules with his day . Getting back to NORMAL is so challenging as you all can attest to today

Last year at this time we had been off sutent for 6 weeks after we had a " toxic" experience and discontinued after taking from end of September 2016 to November 24, 2016.

Josh was down to 95 pounds and was coughing pretty much night and day . He was suffering from

A) lack of Energy, drive
B) pain from broken rib after coughing fit while on sutinib

His over clinical physic had the doctors believing that he was possible succumbing to cachexia.
We explored having a stomach tube surgically installed so Josh could gain weight and consulted and incorporated a natural doctor and dietician into our care team .

Tumors were appearing in his lower cavity after the November discontinuation of sutent at an alarming rate .
( we all know that 1 can feel like an alarming rate . )

-June 19 Opdivo --weight 105 ish
-Aug 2016-- brain tumors started to disappear

-October-- lung,lower pelvic / cavity tumors reduced , inflammation i.e. Larger image of liver shown


-Jan 2017--weight 124.2
Liver reduction as well as other lower cavity tumors being followed

All brain tumors gone except LITT 1cm tumor that got all practical purposes is dead

Feb 9 weight 127.2


I know and understand there have been others before us on trial monoclonal and immune therapies who've had these excellent results . Who've given there lives with dose escalating trials . Our hearts and thanks needs to be said to these families .

That being said I also am being realistic in always being ahead of the game if at all possible in the event we need to change .
We as a family are so grateful for this extra year that has been given to us with Josh and look forward to many more!
Any suggestions are welcome

Love
Debbie

[Bonni Hess]

Dear Debbie, With Josh's thankfully very successful and encouraging results thus far on his Opdivo treatment, why are you thinking that you might need to sometime possibly change treatment and are asking for any suggestions? Is there any data that indicates that the Opdivo might eventually quit working? I know that we all need to always be prepared with other possible treatment options, but I am just wondering if there is some specific basis for your expressed concern? You made a reference to knowing and understanding that "there have been others before us on monoclonal and immune therapies who have had these excellent results. Who've given their lives with dose escalating trials". Could you please further explain, clarify, and document this statement because I am not personally aware of anyone who has had excellent Immunotherapy treatment results but then lost their lives when the dose was increased, and obviously this is an issue of great concern that requires more information for anyone who is considering or currently participating in an Immunotherapy treatment. With special caring thoughts, healing wishes, and continued Hope, Bonni

[D.ap]

Bonni
Not previe to trials and sure know nothing is in front of us TODAY...
Folks have passed in trials of Clag etc
I venture to believe that it was dose stage 1 or 2?
My heart melts and I sure tear up
L
D

[Olga]

Bonni - remember when someone from the Facebook group made the connection here to us to let us know that there is a good response in few different immunotherapy trials - in Canada and US? They did not post here much so you might have missed that. Some of them already developed tolerance to their PDL1 drugs, some even lost their lives. We do not have any concrete info but this is what we could read there.
MEDI4736 was the name?
http://www.cureasps.org/forum/viewtopic.php?f=70&t=1104
https://www.facebook.com/groups/ASPSSupportGroup/