Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Hi everyone! It’s been a long time. After cryo + direct injection ici at Spain, i started to work and it was so busy :( One week ago, i had a pain at left abdomen. So i got a ultrasonography, and doctor said there is huge mass(17cm) by the left kideney. I think it’s missed cuz recently, i took ct fo...

Seth - am I reading correctly and non-treated mets are all gone? Please verify with your local oncologist and radiologist as this is a very important part of your treatment and we will be very interested to find this out. The possibility to cryoablate some mets with the ICI drugs injection into the...

I got message from cryo dr. No new met. Didnt treated mets are all gone. Treated mets are almost gone or much reduced. Good result! And i think it’ like an abscopal effect!!

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!

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 m...

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 trea...

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 fe...

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!

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€ fo...

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!!

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 t...

Seth I hope you are beginning to feel better after the pneumothorax experience. I’m sorry that happened. As Olga has said , thank you so much for sharing your experience as it helps all! : ) Are the responsive patients also ASPS patients ? Being called Stage 4 ? Looks like 3mg/kg is still the recom...

Hi Seth, thank you very much for an update. Your sharing the experience with us about the combination treatment of cryoablation for the lung mets with immunotherapy drugs small dose injected directly into the ablated site during the procedure is priceless, it is an unique treatment and now we can g...

Yesterday, i took 3rd cryo. Doctor said mets that took cryo at 1st and 2nd cryo is being dead. It’s not fully dead but at necrotic status. So, it’s good news! There was pneumothorax after 2nd cryo, but beside that side effects are very easy to deal with. Doctor said that abscopal effect was happemed...

Thanks Debbie!! I read it. And can get some hope:) I have some questions. I’ve been taking pazopanib from the first surgery(Nov. 2017). I really want to stop it. But i’m quite worried about rebound after stopping tki. So, after first cryo and ici treatment, i’ll stop taking tki. How do you guys thin...