Joshua on Keytruda /axitinib off label

[Olga]

I am not sure re. spine. Found some review
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2077803/
what is the blood work like? side effects from the drugs need to be looked at, as seizures are noted as the infrequent side effect.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6327220/
https://www.mdedge.com/neurology/articl ... gic-events

[D.ap]

Thank you Olga
I’ll bring to our families attention and then the neurologist .

[Olga]

Acute and/or severe electrolyte imbalances can manifest with rapidly progressive neurologic symptoms or seizures, which may be the sole presenting symptom. Seizures are more frequently observed in patients with sodium disorders (especially hyponatremia), hypocalcemia, and hypomagnesaemia.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4712283

[D.ap]

Thank you Olga
I also sent the kids an article on calcium -sensing receptor autoantibodies .
Parathyroid issues and or other metabolic disorders .
I hope we can get to the bottom of this seizure episode, sooner than later .
However , we are so thankful it wasn’t a result of a new brain met.😊

[D.ap]

Hello all,

Josh has been put on vimpat( Lacosamide), and at the request of an epileptic doctor is having an EEG performed today .
Our goal is no seizures / black outs for 6 months while on an anti-seizure Med and reviewing and considering driving again.
Had Covid test Monday , infusion and Nurse practitioner visit then dashed to Ku Med ,for EEG .

[D.ap]

Hello all,

It’s been a while since I’ve posted .
Josh experienced another seizure at the end of August however has been seizure free since then .
We had our follow up liver scan and it’s looks like activity on the outer perimeter.
The 6cm tumor is deemed dead in the middle but has showed to of grown 4mm ish.
We are sched for cryoablation this Friday .
Had our infusion today.

Will update .

[Olga]

Thank you for an update Deb, despite some isolated growth in a previously ablated met in a liver, it was rather expected with the large size of the ablated met. Good timing with scheduling K within 2 days from the ablation, it should take care of this met and hopefully increase the immune system recognition of the tumor. Good luck with that.

[D.ap]

Thank you Olga.😊

However the scheduling was setup by the doctors so I govt them the credit of doing a good job!

Dr. Lemon, interventional radiologist , said he wasn’t surprised of the possibility of growth , considering thd 6cm original size .

[D.ap]

Morning all
Josh was released after procedure Friday , after an 8cm ablation of the right side liver tumor. 5 needles were utilized.

The original tumor was treated as well as the perimeter activity that was seen on the prior scan.

His report during the weekend was he was “sore”.😏
We will be scanning in a month .

[Olga]

Deb, thank you for the update. Josh should be very careful now with this is the large necrotic tissue in his liver, with some careful activity like walking could be beneficial but no heavy lifting etc. He probably realizes that himself.

[D.ap]

Hello all,

Scans of liver and lungs came back looking excellent !
The liver is NOT lighting up after our last 8cm ablation .
We are quite happy with the news.😊
Happy holidays to all.

Love ,

[Olga]

Very happy news indeed, Deb! Tell Josh that we all are rooting for him. It is very good to hear that now there is a good quality and experienced cryo ablation doctor for Josh available locally, it is important - no need to travel and something can be arranged rather fast. It was a large liver met to treat by cryo, but dr managed to do it in staged approach, it was expected that the initial treatment might leave some areas of the viable tumor, but with the good observational control it was noticed right away and fixed ASAP. Very well done indeed.
I'll ask Ivan to let Dr.Rolle know that the surgery he has done a long time ago paved the way for Josh to be able to benefit from immunotherapy and cryo later.

[D.ap]

Thank you Olga!
We are incredibly happy and thankful , for all that has been done for Joshua to have going on 9 years of life, after being diagnosed in Aug 2012.

Please do have Ivan let Dr. Rolle know of Joshua’s progress as well as our families gratitude for all his good work on Josh’s lungs in 2012 and 2013.

viewtopic.php?p=4508#p4508

[D.ap]

Hi all
Time line since April 2😊
April 2—-

Hello all again ,

After careful discussion and consideration , the kids have scheduled the resection of Joshua’s right lobe for April 23rd. The surgeon explained that the right side liver lobectomy will be considered a 60% resection .
The liver regenerates in about an 8 week period and generally grows back to around 80% of the 100%.
The kids pointed out that with the 3 prior ablative procedures and the embolization , and the tumor having grown 2cm since the last November ablation, they felt it time for surgical intervention .

The prior left side is still stable so the surgeon maybe using microwave ablation to treat it in addition to the resection . The gallbladder will be removed as well as it is in proximity of the right tumor area.
The right lobectomy will be a 60% resection which should result in an 80% regeneration in about 8 weeks at its maximum rate. Pretty amazing .
Josh will be in the hospital for a 4 day min.

Ie seizures
We go to Ku Med on Sunday and stay for a study off seizure meds , till the following Friday , to map the left occipital lobe and it’s potential for either surgery removal and or an implant , to eliminate his seizures .

Liver surgery - April 23

Joshua’s surgical procedure was April 23l and it took about 2 1/2 hours . His recovery before being admitted to his room ,was another 3-4 hours .

His total right lobe and gallbladder were removed .
The right lobe with the 6cm previously treated cryo, 9cms was removed , was found to be 50% necrotic for what that is worth , but defiantly TFE3 and MYD1 positive.

His gallbladder was clear of any metastatic issues. The leftside 4cm tumor ,looked dead from Joshua’s 2015 liver cryoablation in Michigan , by Dr. Auon.

He did stay in hospital till weds of that week and recovered well.

We had an infusion scheduled for weds of the follow week .
His brain procedure is on the back burner and will be addressed next after his 12 week recovery from this surgery . His vimpat and lomandrasine are keeping him seizure free although he has a degree of focal visual happenings , which he has associated happening prior to his seizures , while on still on the above meds .

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 .

Will update more later.

Love ,

[Olga]

Thank you Deb. Good active management with the good result. re brain - something irritates the area of the brain that leads to seizures? perhaps the scar tissue from the previous times?