Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Dear ASPS Community Friends:

First of all, sorry guys for My english.
I am Kai's brother from china. Kai was diagnosed with ASPS in 2017, It's especially difficult for my family but I am very happy to find here, Thanks
Olga create this forum, I post here for record medical history and exchange experience with every patient, hope this can be help.

here is the list of treatment

2017.3.20 Right thigh, Surgery to remove primary tumor, the primary size is about 4x4x3.5cm, at that time lung nodules is about 0.3cm, after the
surgery, Dr.bai of Beijing Cancer Hospital give my brother IL-2R for few months(At this time, I think it's a big mistake).

2017.6.20 We did CT scan for primary and lung, the primary is fine, but the lung nodules is growing, the biggest size is about 0.7cm, at that time I
was so panic, I realize it's a cancer(Before this, I really have no idea about cancer), so I starting find a way to cure, I call Dr.bai ask for
some answer, but he told me my brother is in advanced stage of ASPS, he suggest starting take Pazopanib for control the lung mets;
after some online search and visit Dr.LiuJiayong we decide delay the target drugs and do the CT scan periodical.

2017.7.10 About this time we starting take traditional Chinese medicine, Actually, I don't know if this can work, but We decide to have a try, it's
so expensive.
2017.9.20 We did CT scan for primary and lung, the primary is also fine and lung mets size is about 1.2cm, and traditional Chinese medicine is
continue.
2017.12.10 lung mets is still 1.2cm, we thought the traditional Chinese medicine is working, maybe it's starting have control for cancel cells.
2018.4.10 unfortunately, the biggest lung mets is growing to 2.0cm, and the others seems never grow, At this time, we decide to do a cryo for
the biggest lung mets and take PD-1 drugs after cryo.

I will keep posted.

Patients from china can left a webchat, I will add you to my contact list soon.

Welcome to our board. Thank you for posting the story of your brother Kai.
From what you posted, I do not see any evidence the Chinese traditional medicine drug was working at all - it is a very frequent situation when the lung mets grow faster after the surgery to remove the primary tumor - the growth factors are very elevated at that post-operation period. Then they calm down and the growth slows down as well. Then they just slowly grow.
Currently the PD-L/PD-L1 immunotherapy checkpoint inhibitors are the most promising class of drugs for ASPS - Keytruda, Opdivo, atezolizumab. Any one of them are good to try.

Welcome. Unfortunately I share Olga`s opinion about traditional chinese medicine. These days asps can be effectively treated with surgeries, ablations and stereotactic radiation. Not to mention that asps is indeed the best responding sarcoma to immunotherapies. Immunotherapies are mostly used as last resort, because they are so new and still somewhat experimental. We don't yet have lots of experience about using them against early stage asps. I have lived over decade with asps so far.

Hello All

Welcome
I’m sure sorry to hear of your brother’s diagnosis but really glad to hear of the surgery of the primary .
As Jussi has stated ,it’s one of the most effective treatments to date.

What was the Chinese treatment ?

IL-2 is certainly a powerful Med however there are some suggestions that it can be used with PDL-1 meds to revive T cell , exhaustion .

“Molecular and cellular insights into T cell exhaustion”
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4889009/


Was the IL-2 used at a low or high dosage? Why are you feeling it was a mistake?

Our son is on Opdivo since 2016. Before we decided on Opdivo , we talked of using interlukins but our oncologist said he wouldn’t recommend then because of the toxic side effects .

Heres an article that talks of the combinding of IL-2 and anti PDL-1 meds, but at low dosing with IL-2

I’m not suggesting that your brother do the following, however suggestioning to why your team may of started with this systemic treatment.
It may of given them a clue to how your brother would be able to be treated in the future?
We are all still learning about Asps and systemic treatments.

“PD-L1 blockade synergizes with IL-2 therapy in reinvigorating exhausted T cells.”

https://www.ncbi.nlm.nih.gov/m/pubmed/23676462/

The treating of the lung tumor sounds like a good choice though.
Where’s it at in your brothers lung?

Nice to meet you.

Sincerely
Debbie

Olga wrote:Welcome to our board. Thank you for posting the story of your brother Kai.
From what you posted, I do not see any evidence the Chinese traditional medicine drug was working at all - it is a very frequent situation when the lung mets grow faster after the surgery to remove the primary tumor - the growth factors are very elevated at that post-operation period. Then they calm down and the growth slows down as well. Then they just slowly grow.
Currently the PD-L/PD-L1 immunotherapy checkpoint inhibitors are the most promising class of drugs for ASPS - Keytruda, Opdivo, atezolizumab. Any one of them are good to try.

Hi, Olga, thanks for your reply.

Agreed, We're going to try PD-1/PD-L1 immunotherapy.

About Chinese traditional medicine, the effect is very slow, especially for cancer, systemic nurse or something, but even more like a gamble, considering my brother's lung mets is growing to 2cm, I decide taking the effective way like PD-1, Cryo-Hit, etc.

arojussi wrote:Welcome. Unfortunately I share Olga`s opinion about traditional chinese medicine. These days asps can be effectively treated with surgeries, ablations and stereotactic radiation. Not to mention that asps is indeed the best responding sarcoma to immunotherapies. Immunotherapies are mostly used as last resort, because they are so new and still somewhat experimental. We don't yet have lots of experience about using them against early stage asps. I have lived over decade with asps so far.

At that time I was just want to try traditional chinese medicine, Now it seems that not working at all, anyway, I give it up. according to data statistics of 138 patients in china, the effective way for my brother is Cryo-Hit with PD-1, I will keep you posted.

D.ap wrote:Hello All

Welcome
I’m sure sorry to hear of your brother’s diagnosis but really glad to hear of the surgery of the primary .
As Jussi has stated ,it’s one of the most effective treatments to date.

What was the Chinese treatment ?

IL-2 is certainly a powerful Med however there are some suggestions that it can be used with PDL-1 meds to revive T cell , exhaustion .

“Molecular and cellular insights into T cell exhaustion”
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4889009/


Was the IL-2 used at a low or high dosage? Why are you feeling it was a mistake?

Our son is on Opdivo since 2016. Before we decided on Opdivo , we talked of using interlukins but our oncologist said he wouldn’t recommend then because of the toxic side effects .

Heres an article that talks of the combinding of IL-2 and anti PDL-1 meds, but at low dosing with IL-2

I’m not suggesting that your brother do the following, however suggestioning to why your team may of started with this systemic treatment.
It may of given them a clue to how your brother would be able to be treated in the future?
We are all still learning about Asps and systemic treatments.

“PD-L1 blockade synergizes with IL-2 therapy in reinvigorating exhausted T cells.”

https://www.ncbi.nlm.nih.gov/m/pubmed/23676462/

The treating of the lung tumor sounds like a good choice though.
Where’s it at in your brothers lung?

Nice to meet you.

Sincerely
Debbie

I just learned from chinese group, IL-2 sometimes they can help the cancer cell to growing, like double-edged sword, but the theory is complicated.
The most important of using drugs is to taking the one which have data statistic, lower the risk and improve return.

Hello All

I just learned from chinese group, IL-2 sometimes they can help the cancer cell to growing, like double-edged sword, but the theory is complicated.
The most important of using drugs is to taking the one which have data statistic, lower the risk and improve return.

Immunosuppresive meds sure can produce microtumor pop ups and or accelarated growth, in already seen/ scanned microtumors . 2mm and above

Was there venious / arterial and or bone involvement , that you know of described in the pathology report?
Just a thought..

Is it possible the lung tumors can now benefit from PDL-1 meds?
Sincerely
Debbie

D.ap wrote:Hello All

I just learned from chinese group, IL-2 sometimes they can help the cancer cell to growing, like double-edged sword, but the theory is complicated.
The most important of using drugs is to taking the one which have data statistic, lower the risk and improve return.

Immunosuppresive meds sure can produce microtumor pop ups and or accelarated growth, in already seen/ scanned microtumors . 2mm and above

Was there venious / arterial and or bone involvement , that you know of described in the pathology report?
Just a thought..

Is it possible the lung tumors can now benefit from PDL-1 meds?
Sincerely
Debbie

Any tumors can benefit from PD-1/PD-L1, there are few indicators for reference, like MSI/TMB/PD-L1/CD3/CD8, these can test from pathological section.
pathology report is quite straight forward, depend on the Dr. who wrote it. For us, it's the size of the lung mets(for example).
BTW, PD-1 and PD-L1 drugs can't use in the meanwhile, but take turns.

Hello All
How is Kai doing with his PD1 Med?
Was the cryo helpful ?

Which one is he on? Infusion and or direct injection into the tumor?

Seth from South Korea shared the latter treatment with us just recently . Of direct injection being performed after using cryoablation.

http://www.cureasps.org/forum/viewtopic ... 634#p12611

We just receive the last time CT scan report, everything is fine, but the lung mets growing to (2.0cm --> 2.2cm)

PD-1 is not started yet. Maybe this month middle.