Ivan rocking it since 2003

ASPS patients post updates here, including tales of success :)
Naynay
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Re: Ivan rocking it since 2003

Post by Naynay »

Ivan,
Your progress is amazing and so glad to hear all scans have come back with no concern. What an amazing feeling that must be. Thank you for keeping us updated, it gives hope to those in the thick of it.
Ivan
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Re: Ivan rocking it since 2003

Post by Ivan »

Well, I need cortisol to rise while I'm asleep and I can't readily accomplish that. My sleep has been improving and I hope it to be back to normal in the next few months.
Ivan
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Re: Ivan rocking it since 2003

Post by Ivan »

Naynay wrote: Tue Mar 02, 2021 2:08 pm Ivan,
Your progress is amazing and so glad to hear all scans have come back with no concern. What an amazing feeling that must be. Thank you for keeping us updated, it gives hope to those in the thick of it.
It's been a long road. Your odds of making it today are so much higher than 18 years ago when I was diagnosed.
Ivan
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Re: Ivan rocking it since 2003

Post by Ivan »

Dear ASPS friends,

Happy to report that my latest scans are clear. They were insanely delayed since last October when I had my last round. After a huge struggle, finally completed them end of June. Brain, abdominal, cardiac MRI and CT scans is what I had done. While I don't have the reports in hand, abdominal and cardiac MRI reports are in good shape as per the doctor.
D.ap
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Re: Ivan rocking it since 2003

Post by D.ap »

Ivan and family,

Incredibly good news !
Could you remind us of the size and location of your primary and when it was resected?
Also when lung tumors appeared ?

Thank you in advance.

Love the Pearsons ❤️
Olga
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Re: Ivan rocking it since 2003

Post by Olga »

The full story can be found in the first post of Ivan thread.
Dx in 2003.
The primary was very small. Right arm, 18 mm when resected
First Lung mets were found few months later. Continued to slowly increase in size and number till the first laser assisted resection by Dr.Rolle in Germany 2 years later.
Dr.Rolle retired now and he and Ivan are the best friends for life, in frequent contacts about the life and nature
Olga
Cass_OK
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Re: Ivan rocking it since 2003

Post by Cass_OK »

Amazing news! You are my inspiration!
D.ap
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Re: Ivan rocking it since 2003

Post by D.ap »

Olga wrote: Wed Aug 10, 2022 8:06 pm The full story can be found in the first post of Ivan thread.
Dx in 2003.
The primary was very small. Right arm, 18 mm when resected
First Lung mets were found few months later. Continued to slowly increase in size and number till the first laser assisted resection by Dr.Rolle in Germany 2 years later.
Dr.Rolle retired now and he and Ivan are the best friends for life, in frequent contacts about the life and nature
Thanks for the reminder , Olga.
18mms was a fraction of Joshua’s 60mm right upper thigh tumor but Ivan’s lung Met numbers were comparable to Joshua’s numbers, that were removed by Dr. Rolle .

I wonder how when the primary sizes were so different , but the lung metastasis ended being pretty close in numbers ?
Debbie
Olga
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Re: Ivan rocking it since 2003

Post by Olga »

It is suspected that ASPS metastasizes very early in course of its progress, and the mets just stay dormant at the sites they attach themselves to i.e. lungs where the single cells are easily trapped at the dead ends of the twisted capillaries. The primary grows in the meantime, but the cells are still dormant, multiple, staying undetected due to a small size/inactivity. They often start to grow when the primary is resected or when it gets pretty large and the growth factors are elevated trough out the body.
This is why even localized ASPS is staged Stage 3 as the presence of the multiple but undetected mets is assumed.
Olga
ntran727
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Re: Ivan rocking it since 2003

Post by ntran727 »

So happy for the good news Ivan!
Ivan
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Re: Ivan rocking it since 2003

Post by Ivan »

Hello everyone. I continue to be in good health, and my scans are NED.
D.ap
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Re: Ivan rocking it since 2003

Post by D.ap »

Hello Ivan ,

That’s really wonderful to hear !so incredibly happy to hear of .
Love ,
Debbie
jcs2007
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Re: Ivan rocking it since 2003

Post by jcs2007 »

Thanks for the positive update!
Naynay
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Re: Ivan rocking it since 2003

Post by Naynay »

Ivan wrote: Tue May 30, 2023 6:08 pm Hello everyone. I continue to be in good health, and my scans are NED.
Congrats Ivan! Love to hear that! Thanks for the update.
Ivan
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Re: Ivan rocking it since 2003

Post by Ivan »

Once again, I had my latest round of scans. Everything is NED. In a few months, it will be 4 years since I've stopped PD-1 therapy in Feb 2020.
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