Seth from South Korea, Dx november 2017

ASPS patients post updates here, including tales of success :)
Olga
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Re: Seth from South Korea, Dx november 2017

Post by Olga »

Hi Seth, we are looking forward to the scan results. You have to understand that after the cryoablation the size of the met initially increases as they freeze the met with the margins (usually at least 10 mm bigger overall). As the time goes, the necrotic tissue is being taken away by the body, some scars stay stable for some time, some start to get smaller sooner - depends on the organ/location etc. The size after 6 months post the treatment has to get smaller if everything is going on fine.
My questions for the radiologist would be:
1. Are there any new mets
2. Is there any reduction in any untreated mets (abscopal effect)
3. are the treated mets enhancing or not
Olga
seth94
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Re: Seth from South Korea, Dx november 2017

Post by seth94 »

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!!
Olga
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Re: Seth from South Korea, Dx november 2017

Post by Olga »

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 treated met just few doses and to be able to attract the immune system cells attention to the dead tissue and to create a tumor specific memory to be able to recognize the tumors elsewhere is much more interesting than the cryo itself - although just treating the multiple mets locally by cryo with the success is an excellent result by itself.
I also have an additional question re. arm. How is the met in the arm doing? as I remember you had the met cryoablated there to, do you feel any pain or problems with the bone?
Olga
seth94
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Re: Seth from South Korea, Dx november 2017

Post by seth94 »

Olga wrote: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 treated met just few doses and to be able to attract the immune system cells attention to the dead tissue and to create a tumor specific memory to be able to recognize the tumors elsewhere is much more interesting than the cryo itself - although just treating the multiple mets locally by cryo with the success is an excellent result by itself.
I also have an additional question re. arm. How is the met in the arm doing? as I remember you had the met cryoablated there to, do you feel any pain or problems with the bone?

Yeah, my cryo dr. said untreated lung mets are gone. He said “I have seen the CT: it lesions that we didn't treat are gone. Those treated almost all are gone or much reduced.” About arm mets, i didnt get scan yet. I think pet is next scan. Frequency of the bone mets pain is much lesser than before cryo! My treated bones are fully functionally.
Olga
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Re: Seth from South Korea, Dx november 2017

Post by Olga »

MRI with the contrast would be the best scan to check the treated bone mets
Olga
seth94
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Re: Seth from South Korea, Dx november 2017

Post by seth94 »

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 for pelvic and lung.

My last abdominal ct scan was 3 years ago.

It was very stupid.

But i dont understand how can it grows so fast..

I’ll take a ct scan and see surgery is possible.

Also pet scan too.
D.ap
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Re: Seth from South Korea, Dx november 2017

Post by D.ap »

Hello Seth,
I’m sure sorry to hear of the mass that was found recently.😔
Back in 2018 when you had discovered multiple bone mets , Olga had asked if you had had your pathology re- reviewed as ASPS and renal cell carcinoma. have a lot of molecular similarities .
Were you able to do that ? With the mass being 17cm(170mm) , the almost 5mm monthly average growth is pretty aggressive.
Not characteristic of ASPS?

Let us know how your surgical consult goes .
Much love ,
Debbie
Olga
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Re: Seth from South Korea, Dx november 2017

Post by Olga »

Seth, this is very unfortunate. Lets hope you are going to have a good success with the surgery. It makes a sense to look for the best experienced abdominal surgeon in the field. Good luck.
Olga
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