Seth from South Korea, Dx november 2017

ASPS patients post updates here, including tales of success :)
seth94
New Member
Posts: 44
Joined: Wed Jun 06, 2018 2:37 am

Re: Seth from South Korea, Dx november 2017

Post by seth94 »

Thank you Olga!

There are good news. Left lung mets are almost disappeared and right lung mets are being attacked!

And last pet ct scan(at June) said there is a met in T2 bone. But 3 days ago, my cryo team doctors said that there is no met in T2 according to the ct scan(3days ago).

I dont know why this happened. Does pet ct is not that precise to asps??
Olga
Admin
Posts: 2349
Joined: Mon Jun 26, 2006 11:46 pm
Location: Vancouver, Canada

Re: Seth from South Korea, Dx november 2017

Post by Olga »

It is a good news!
Was the CT done with the contrast? MRI with the contrast is a better scan for the soft tissue and bone mets, but if the location allows this scan to be taken.
Olga
seth94
New Member
Posts: 44
Joined: Wed Jun 06, 2018 2:37 am

Re: Seth from South Korea, Dx november 2017

Post by seth94 »

Olga wrote:It is a good news!
Was the CT done with the contrast? MRI with the contrast is a better scan for the soft tissue and bone mets, but if the location allows this scan to be taken.
Thank you again Olga! Yes ct was done with contrast!

And i’ll take a bone cryo for my bone mets two weeks later!!
Olga
Admin
Posts: 2349
Joined: Mon Jun 26, 2006 11:46 pm
Location: Vancouver, Canada

Re: Seth from South Korea, Dx november 2017

Post by Olga »

Seth,
can you clarify pls what is the cost per one treatment? As I understand they bill one by one for each treatment?
Olga
seth94
New Member
Posts: 44
Joined: Wed Jun 06, 2018 2:37 am

Re: Seth from South Korea, Dx november 2017

Post by seth94 »

Olga wrote:Seth,
can you clarify pls what is the cost per one treatment? As I understand they bill one by one for each treatment?


Yes, they bill one by each cryo!

Bill includes, pay for doctors, hospital, ici, cryo probes.

For each cryo, i pay 9,500€ for doctors, 2,300€ for hospital, 2,500€ for ici, 1,500€ for cryo probes(it depends on size and number of mets that treated)!
So totally, 15,800-16,000€ for each cryo. At each cryo, i treated 2-3 mets!
Olga
Admin
Posts: 2349
Joined: Mon Jun 26, 2006 11:46 pm
Location: Vancouver, Canada

Re: Seth from South Korea, Dx november 2017

Post by Olga »

So they cryo ablated few 2-3 mets during each procedure. Do they inject ICI drug into each cryoablated met or into only one (do you pay one ICI payment or depends on the number mets treated)?
Olga
seth94
New Member
Posts: 44
Joined: Wed Jun 06, 2018 2:37 am

Re: Seth from South Korea, Dx november 2017

Post by seth94 »

Olga wrote:So they cryo ablated few 2-3 mets during each procedure. Do they inject ICI drug into each cryoablated met or into only one (do you pay one ICI payment or depends on the number mets treated)?
They inject each met! And i pay one ici payment and doctor divide it for each met!
Olga
Admin
Posts: 2349
Joined: Mon Jun 26, 2006 11:46 pm
Location: Vancouver, Canada

Re: Seth from South Korea, Dx november 2017

Post by Olga »

Hi Seth, we were wondering how did the treatment for the bone mets go and if you had any follow up scans to see if there is an abscopal effect in other non-treated mets so far?
Olga
seth94
New Member
Posts: 44
Joined: Wed Jun 06, 2018 2:37 am

Re: Seth from South Korea, Dx november 2017

Post by seth94 »

Olga wrote:Hi Seth, we were wondering how did the treatment for the bone mets go and if you had any follow up scans to see if there is an abscopal effect in other non-treated mets so far?

Hello Olga~~ i took the bone mets cryo two times for 4 bone mets. I came back to Korea at this Monday!

I took brain MRI few days ago, and dr said no recurrance for surgeried skull met, no meta for brain and cyberknifed skull met is almost gone!

My next scan is lung ct and pet ct 3 months later!

I’m considering keep the ici at Korea. What is your opinion for keeping ici? Do i have to take it? Or do i have to keep it for the future?
Olga
Admin
Posts: 2349
Joined: Mon Jun 26, 2006 11:46 pm
Location: Vancouver, Canada

Re: Seth from South Korea, Dx november 2017

Post by Olga »

It is really hard to say since we do not know if there was any abscopal effect from the multiple small ICI injections with the cryo treatments you had in Spain. How many ICI treatment did you have there in total?
The abscopal effect can only be found by comparing the scans before and after the treatments in Spain and looking at the mets that were not treated by anything - not the surgery/sbrt/cryo - nothing - if they look smaller (or at least inflamed without it is hard to tell from the progression). If they are smaller, you can hope that there was a systemic response and your immune system is now able to recognize the ASPS tumors around the body. I would have a CT scan earlier, to make a decision and to have a baseline scan if you start the ICI treatment.
But there is no harm in starting the ICI anyways if you can get an access especially trough the insurance.
Olga
seth94
New Member
Posts: 44
Joined: Wed Jun 06, 2018 2:37 am

Re: Seth from South Korea, Dx november 2017

Post by seth94 »

Olga wrote:It is really hard to say since we do not know if there was any abscopal effect from the multiple small ICI injections with the cryo treatments you had in Spain. How many ICI treatment did you have there in total?
The abscopal effect can only be found by comparing the scans before and after the treatments in Spain and looking at the mets that were not treated by anything - not the surgery/sbrt/cryo - nothing - if they look smaller (or at least inflamed without it is hard to tell from the progression). If they are smaller, you can hope that there was a systemic response and your immune system is now able to recognize the ASPS tumors around the body. I would have a CT scan earlier, to make a decision and to have a baseline scan if you start the ICI treatment.
But there is no harm in starting the ICI anyways if you can get an access especially trough the insurance.
Oh, about the abscopal effect, dr said shape of untreated lung mets are changed! No one knows it’s an abscopal effect or not. I took ici 6 times, 3 times injected directly to mets, other 3 times injected through vein. At all 6 times, i took 1/2 dosage for my weight!
Olga
Admin
Posts: 2349
Joined: Mon Jun 26, 2006 11:46 pm
Location: Vancouver, Canada

Re: Seth from South Korea, Dx november 2017

Post by Olga »

Thank you, very interesting indeed. So they do not always inject the ICI in a treated met, sometimes they make it a systemic treatment? which mets are not treated by the in the met IC - bone mets?
the half dose is not that bad at all - for some people there is no need for a bigger dose.
Olga
seth94
New Member
Posts: 44
Joined: Wed Jun 06, 2018 2:37 am

Re: Seth from South Korea, Dx november 2017

Post by seth94 »

Olga wrote:Thank you, very interesting indeed. So they do not always inject the ICI in a treated met, sometimes they make it a systemic treatment? which mets are not treated by the in the met IC - bone mets?
the half dose is not that bad at all - for some people there is no need for a bigger dose.

Yes, bone mets and some lung mets were not suitable for direct injecting!!
D.ap
Senior Member
Posts: 4104
Joined: Fri Jan 18, 2013 11:19 am

Re: Seth from South Korea, Dx november 2017

Post by D.ap »

Wow Seth ,
So good to hear back from you .

Truly interesting reports !

Thank you so much for your reports .

Low doses ( ici ) verses maximum doses , as Olga has pointed out are having success with some patients .

It’s speculative ( inconclusive) at least here in the USA , by virtue of a scan is my understanding

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5735832/
However ,you have graciously given us multiiple anecdotal experience(s). :)

When is a lung tumor not a good candidate to be injected directly by the ici?
Debbie
seth94
New Member
Posts: 44
Joined: Wed Jun 06, 2018 2:37 am

Re: Seth from South Korea, Dx november 2017

Post by seth94 »

I took a lung, abdomen, pelvis ct scan today.

All of my lung/lymph mets size decreased contrast to Scan of July 2018!

Dr. said pelvis is clear(no recurrence) and abdomen is clear.

But, scan result from radiologist is not completed yet!

I’ll send my ct scan images to cryo dr!
Post Reply

Return to “Personal Stories and Updates”