Joshua on Keytruda /axitinib off label

[D.ap]

Hi Olga,
Yes I believe this is scar tissue from the SRS treatment in April of 2016.
That being said , I’d like to point out that our first dose of Opdivo was subsequent ( July 2016) and maybe Joshua’s immune system saw the inflammation as an attractive target?

https://cureasps.org/forum/viewtopic.php?p=9238#p9238

[D.ap]

July 11-
Ie Brain procedure update -

Joshua’s brain procedure will be performed on September 9 and I will have more info as it becomes available .
The idea , as I understand it , is to electrically interrupt any brain activity that initiates a seizure as it is electrically happening ?
He is scheduled for his scan of the results of his April 23 liver surgery , July 27,
to show how well it’s regrown and to do a look see at the left side as well .

Hi all,
Our invasive EEG was rescheduled to September 29th and was performed by a Ct guided apparatus to place 9 wires, 8 as I understand it in the left occipital lobe region and 1in the partiel lobe region .
The surgery took over 3 hours and Josh was put under anesthesia during the CT guided wire placement .

Josh was taken off his Lamotrigine Thursday afternoon and will continues to be off it until there is gotten enough info to better evaluate what is being affected by his seizures. His episodes have thus far been uneventfully minor and they are monitoring him with 2 cameras 24 hours in hopes of capturing in real time a seizure.

It’s my understanding that the partiel lobe as a rule isn’t typically an origination area of a seizure but can be affected by the seizures radiating episodes.
The graph from the invasive EEG is showing IED (Interictal Epileptiform Discharges) and being the only detectable pulse thus far.

At the end of the study 2 weeks or so , the doctors will present their findings and opinions to what they would recommend Josh to do ( resect and or ablate ) with the occipital lobe inflammation /slough / scar tissue / and or tumor .
He has continued with Keytruda infusions to date .
Until next time .

[D.ap]

Hi all,
Our 2 week study ended earlier than planned as all the info we needed was complied earlier rather than later .😊
I’m sure I learned more then I ever wanted to know about the brain but I’m also sure that I’ll be learning more as time goes on.😏

We were able to get seizure info from minor seizure activities which I feel was a good thing .

It’s been determined that the left occipital lobe is where the seizures are limited at this time . It’s about a 1inch area of most likely scar tissue causing the seizures .
Once the information was mapped then the wires were used to transmit an outside pulse , while Josh gave feed back to how his vision was affected by pulse .

It’s looking like a degree ( 10-? %) of his peripheral outside vision would be diminished with resection but could eliminate future seizures.
Implanted devices are an option as well but placing them so as to not create “an artifact “ ie obstruction to his future MRIs is a possible problem .

He is home and feeling some repercussions ie facial muscle tension and some headaches .
His next appointment will be in a couple of weeks to get more information as to what the neurologist /epilepsy team has determined to be options .

Hope all is well with you all .
Love ,

[Olga]

Fascinating investigation performed by the treating team, thank you for the reporting. It is good to hear that there are no new brain metastases found. Hopefully the scar tissue can be removed with the microsurgery. Some locations are more easily accessible, Ivan's brain surgery was surprisingly easy for him to have and recover.

[D.ap]

Hi all,
Josh had a teleconference yesterday with both neurosurgeon clinician and oncologist .
The neurosurgery department has released him to normal activity ( no weight restrictions , driving restrictions ).
Our next appointment with neurologist/epilepsy doctor will be in a couple of weeks .

As far as the oncologist goes , Josh received his mri/ct of lungs and lower pelvic area by zoom as well.

Area of concern -
The lower left inflammation has disappeared but a new upper left inflammation aberration has appeared .
Oncologist would like to perform a biopsy to rule out malignant happening and Josh is waiting for a scheduling call back .

The liver looks excellent and is growing back nicely .😊
Will update when we have more info .

Love to all,

[Olga]

Thank you for the update. Where is this new lower left inflammation located?

[D.ap]

Hi Olga,

Medial left upper .
Was 4mm in late July and now measures 1.8cm
It looks to be infection , more inflammation than
nodular ?

[Olga]

Thanks Deb I means to ask what is the organ of concern it is not clear from your post.

[D.ap]

Hi Olga
You are correct
It’s non descriptive of the organ of interest 😏
It’s was Joshuas lower left lung inflammation we were originally watching for possible nodule growth reoccurrence, that’s looking good
. So currently it’s the medial lung area we need to watch biopsy for malignancy and or infection , and or ICI response .
It’s interesting to note that the inflammation of these 2 events seems to happen around liver procedures , which probably could contribute to the inflammatory response ?

What are your thoughts ?

Here’s where we were
Jan 23, 2020

Hello all
I haven’t posted since last year and we’ve continued on Keytruda and axitinib , on 3 week schedules since then.
In November we redid the embolization and will be doing a MRI this week to see the vascular results , to the liver .

Our ct scan in October showed improvement with our left lung inflammation, however our January CT chest reported inflammation increase once again .
The radiologist reported pneumonia .

We were presented with several option , to address this increase and have chosen to perform a needle biopsy to see what the heck is going on, with this happening.

Prior ct scans showed 3 small images that have been stable for years , near the trachea and a lymph node.
All else is stable and or is the case with the brain , no changes and or appearance of images .
Will keep you posted .

[Olga]

The increase is significant, from 4mm in late July to 1.8cm in late October - in 3 months? a bit strange for ASPS I would say, and to much for the inflammatory response to ICI, it is usually like 5 mm? Was the scanning done on the same scanner/same resolution? DId they re-review this nodule on the previous scans?

[D.ap]

Olga
Yes the increase was very much unlike ASPS.
Our biopsy was last week and oncologist/ infusion appointment ,today .
Will update .
Love,

[D.ap]

Hey all,

Good news ..no malignancy detected !
Granuloma is the diagnosis .
I believe Josh had a flu shot recently so maybe inflammation from it and or an infection from an inhaled particle of some sort ?
Culture of biopsy , will be ready in a months time to further define and or eliminate the culprit of the inflammation.

Anyways , good news it’s not ASPS.😊

[Olga]

Thanks Deb, we are super happy for Josh!