Joshua on Opdivo-compassionate use

[Bonni Hess]

Thank you dear Debbie for the shared updated information from Josh"s very good and encouraging most recent scan results. I am so very grateful that he is continuing to have a successful response to his Opdivo treatment with no new mets and shrinkage of his liver mets. Based on the reported decreased size of his two liver lesions, I am perplexed as to why you said that "because of the liver increase" you are now going to switch from Opdivo to a Pembrilizumab and Axitinib combination treatment. When time allows, will you please clarify about this discrepancy in the information?!? I Hope that dear Josh is feeling good and continuing to gain weight, and that he, you, and your family are enjoying a beautiful and happy start to summer. Sharing the good news of Josh's continued sustained disease stability with great joy, healing thoughts, and continued Hope, Bonni

[D.ap]

Hello Bonni
This is from my May 16,2019 post


“Also , apparently in June of last year , a liver tumor that I believe was with us before Josh began Opdivo July 2016
( 12mm)had shown growth on his pelvic CT scans .
It currently is 3.5cm x 5.5cm right lobe up from 12mm 2016”

So it looked like it was progression on the ct scan .
To have stayed on Opdivo we would of had to of added something to it and yervoy would of been the Med most studied at this time. The reports we were seeing talked of toxicity being quite likely to happened .
He still has joint pain and it could of become exacerbated enough to of negated any future move to Keytruda , I believe .

Having been on Opdivo since July of 2016,Josh I believe was indeed the longest ASPS patient to of been on the Med.

With the latest scan report we are in hopes the embolization along with axitinib and pembro , will be enough to address the 2 remaining liver lescions.

If need be we will are keeping in close contact with KUs
Interventional radiologist , who also performs cryoablation.

That you for checking in on us.
Love

Ps
I want to say how incredibly thankful and indebted we are to the manufacturers of Opdivo and Also to the Kansas University Sarcoma medical staff , for ALL that you have done. Without you we wouldn’t have our son with us today .
Love
The Pearson’s

[Bonni Hess]

Thabk you for the additional information and explanation dear Debbie, but I am still confused since the impression on the June 24, 2019 scan results states that there is a "decrease in size of hepatic metatases" compared with the April 12, 2019 scans with the largest liver met decreasing from 5.5 cm. x 3.5 cm. to 4.8 cm. x 3.5. cm.. and the other lesion minimally decreasing from 3.9 cm. x 2.6 cm.to 3.7 cm. x 2.1 cm. To me, this indicates that the Opdivo is continuing to provide met shrinkage and disease stabilization, so I still don't understand why Josh won't be continuing the Opdivo? I too share your deep gratitude to the Opdivo manufacturer for the gift of Life that their product has given dear Josh and the great Hope that it is providing for our ASPS Community patients and families. Heart to heart with special caring thoughts, healing wishes, and continued Hope, Bonni

[Olga]

Deb, after Bonni brought that to our attention - was only one of these liver mets treated with the embolization or both mets blood supply was affected? They both are decreasing. Would mean either abscopal effect or Opdivo is/was working and it was a pseudo-progression - the inflammation that makes it look bigger but not from the tumor growth but from the immune cells migrating to inside of the mets - can obviously happen anytime as I can see from the rare cases articles on the Pubmed.

[D.ap]

I believe only one was treated . The inventional radiologist said 3 vessels were treated and or 3 microspheres were used. Beings that it was
3.5 x 5.5cm ( now 4.8cm x3.5cm), I venture to guess it was the 3 vessels

The other liver tumor shrinkage could be attributed to scan readings , I feel .

[Olga]

The variations in scans might be too the case. I do not see any problem in switching from Opdivo to Keytruda though, as they might not want to keep paying for Opdivo for that long and after the signs of progression detected as with the ICI it is usually 2 years or till the progressing - what comes first. Some articles now object that and suggest keeping the treatment beyond the progression and the benefit might appear again at some point...

[D.ap]

The variations in scans might be too the case. I do not see any problem in switching from Opdivo to Keytruda though, as they might not want to keep paying for Opdivo for that long and after the signs of progression detected as with the ICI it is usually 2 years or till the progressing - what comes first. Some articles now object that and suggest keeping the treatment beyond the progression and the benefit might appear again at some point...

Olga
I feel that to be wonderful news as we've all seen good results with that school of thought.

[ntran727]

Bonni, I think Deb wanted to switch Josh to Keytruda because then they can add axitinib to it for less toxicity than the Opdivo + Yervoy combo. The met grew while he was on Opdivo and did shrink after the embolization, but I think she is concerned that because there was progression with Opdivo that something else needed to be added rather than just Opdivo alone. Is that right Deb? Anyway, I’m very happy to hear the good news and wow his lung Mets improvement is impressive! So currently you guys are just dealing with the lung Mets and liver Mets? No other Mets?

[D.ap]

Hello Nhi and Bonni

What Nhi has explained is exactly correct.
The brain tumor was the first to respond and then the lungs and pelvic areas . We were awe struck as that was back in 2016 and we had absolutely no clue as to how Joshua was going to react.

No other that I'm aware of are being noted.
Good to hear from you both but especially good to hear from you Nhi. : )

[D.ap]

May 2019 we moved to Keytruda /axitinib 😊

Because of liver tumors increases , while on Opdivo
Joshua has begun on Keytruda plus axitinib ( Inlyta)

https://www.cureasps.org/forum/viewtopi ... =76&t=1736

Our personal story

https://www.cureasps.org/forum/viewtopic.php?f=4&t=750

[Bonni Hess]

Thank you for your thoughtful update dear Debbie. I am so sorry about dear Josh's chest inflammation and pneumonia, and Hope that a benign and easily treatable and resolvable cause can be found. I am personally not an advocate of needle biopsies due to the risk of spreading tumor cells through the bloodstream, but Hopefully there are no remaining live tumor cells to be spread. My very best wishes will be with dear Josh, you, and your family for very good news from his upcoming liver MRI that will Hopefully show successful results of liver tumor shrinkage/disappearance from the November liver embolization. I am very grateful and encouraged by Josh's thus far apparently successful response to his Keytruda/Axitinib treatment with no new brain or other tumors. I will be anxiously awaiting your next update as I continue to hold Josh, you, and your family very close in my heart and my most caring thoughts with continued Hope, Bonni