Joshua on Opdivo-compassionate use

[D.ap]

Trying to figure out if Josh had complete response and scans just show remaining scar-tissue. Of course there is no way to be sure, so continuing opdivo is most likely best. Naturally 6.3 cm lung met wont just go away without leaving a scar-tissue. Immunotherapy doesnt clear scar-tissue, but over time scar can slowly Shrink. Also it is possible, that there is still living cancer and immunesystem is just controlling it.

In theory if remaining mets are big enough to be seen in pet-scan, that can identify if remaining lesion is metabolically active. If lesion is metabolically active then it is most likely living cancer and immunesystem is just keeping it under control. Of course you should continue opdivo either way so pet-scan would just satisfy our curiosity.

Jussi
Thank you very much for this sharing of your observation of Joshua’s response to ICI(Opdivo ) , thus far . It’s really quite interesting to ponder on..

[jcs2007]

Thanks for the update on Josh treatment.I forget to look here for his info. Sam is still on axi/ pembro but we are checking on a new possible met in femur so I'll post our news later. ASPS is challenging but glad there are more treatment options now.
PS. Glad he's keeping weight on!

[D.ap]

Cindy
Thank you for the lovely note.;)

Hope to see an update on Sam soon .
Love

[arojussi]

Melanoma can mutate and become resistant to immunotherapy, but asps grows and therefore mutates extremely slowly. In 10 years my asps had zero new mutations. There was just one aspl-tfe3 fusion gene, that they use to diagnose asps. Nothing else. And sutent trial proved,that this is typical for asps. So if there is proven significant response to immunotherapy asps is relatively unlikely to grow again. Of course all is unfortunately possible.

[arojussi]

I am going completely off topic now, but I trust that everyone understands. Tki can damage bones also head of the femor is common metastatic site for asps. If lesion in the bone is highly vascular, then asps met is unfortunately most likely explanation. If vasculature isnt clearly visible, then asps met is unlikely. Possible, but unlikely. I wanted to write this now, before I forget.

[D.ap]

I am going completely off topic now, but I trust that everyone understands. Tki can damage bones also head of the femor is common metastatic site for asps. If lesion in the bone is highly vascular, then asps met is unfortunately most likely explanation. If vasculature isnt clearly visible, then asps met is unlikely. Possible, but unlikely. I wanted to write this now, before I forget.

Thank you Jussi
This is excellent information !
I’m going to copy and paste to Sam’s personal so further discussion :)

[D.ap]

Hello all
Josh reports
After mom asking if heard anything ..


“Yep. Just a message from Oncologist , saying the scan results were stable to mild improvement.”

Truly happy news for this family .:)

These were our 3 month MRI, (brain) ct (lungs and pelvic area).
We’ve been on opdivo 29 months now .
Still having a degree of rheumatoid aches .
Weight still in mid 130s.
We are on 3 mg per kg dosing every 3 weeks .

[Olga]

An excellent new Deb, thank you. Makes an upcoming holiday season brighter for sure for all your family!

[D.ap]

Hello all
It’s been a while since my last post and some setbacks have occurred in our course on Opdivo .
One of our SRS treated brain tumors showed enhancement but we are pretty sure it’s radiation / brain material breakdown , being seen . We are at 3 month scans so we are keeping an eye on it.
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.

After the 12 plus
consecutive scans ( from 4/1/17 to current )the increase equaled over 2cms so the kids and our team were able to arrange for a interventional radiologist to perform what was called a “bland embolization “, on April 29th. He had to block 3 vessels with micro type spheres that were placed by a catheter by going in through the groin artery and near to the right liver tumor .

We will do our first scan after June 1 to see of the progress of the blocking of the tumors blood feed.
We expect to see inflammation however at 8 weeks we hope to know better of its possible success .

In the mean time we are staying on Opdivo .
Will update when I get more information.
Love

[Olga]

Deb, is this grown on Opdivo and embolized now right lobe liver met - the one that Dr.Aoun cryoablated before or it is another one?

[D.ap]

Olga
It’s another one
Cyro( not microwave my bad) was performed on the left lobe.
I believe the recently emboli-zed liver tumor was there before Opdivo .
Will double check at next appointment .

[ntran727]

Sorry to hear about the liver lesion. Hoping the treatment worked. How are the other Mets since Opdivo? How is Josh doing side effects wise?

[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 .

Wanted to remind you all how very very far we’ve come in our journey , from 2016–

June 24, 2019 compared to April 12, 2019

Chest ct and abdomen and pelvis study-
1. Heart remains normal size
2. Mediastinum and pulmonary hula: no adenopathy
3. Lungs and pleura: No significant change in several scattered pulmonary modules . Reference module in right lower lobe again measures 0.6cm. A left lower lobe nodule measures 0.6cm and is unchanged . Partially calcified right lower lobe nodule inferiority is unchanged .
NO NEW NODULES ARE SEEN. Extensive pleural scarring in the lung bases is again noted. No pleural effusion.

Abdomen and pelvis findings :
1. Liver and spleen: Hepatic metastases are again noted. The largest lesion now (the bland (embolized ) measures 4.8cm x3.5cm compared to 5.5 x3.5 cm previously . The segment 4 lesion is minimally decreased in size 3.7 x 2.1cm compared previously to 3.9 x 2.6cm. No new low density lesions are seen. A tiny segment 8 low density lesion is unchanged and may represent a small cyst on image 90 series 2. Spleen unremarkable
2. Adrenal glands and kidneys : unremarkable
3.Pancreas and retroperiotineum : pancreases unremarkable .

Impression
Chest
1. Stable scattered pulmonary metastases . No new pulmonary nodules.
2. No thoracic adenopathy.

Abdomen and pelvis
1. Decrease in size of hepatic metastases. No new hepatic metastases.
2. No abdominal or pelvic adenopathy.

[D.ap]

Because of the liver increase , we have decided to step up our game to combat them systemically but not with the Opdivo with the addition of Yervoy ( toxicity possiblities).
We are going onto a sister drug , pembrolizumab and adding axitinib .
Will be posting in ICIs , under Pembrolizumab .

[D.ap]

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