Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Hi, I'm Seth from South Korea. 24 years old.

First of all, I'm not good at English. I don't have a problem about reading and listening, but have a problem about talking, writing and grammar. So, sorry about my poor English.

Secondly, i want to say thank you to all of you!! When i was diagnosed, i'm sososososo afraid. There was no information about asps, no asps patients in Korea!! So i found information in English, and finally, i reached this forum!
After reached this forum, i can build a plan for my mets.
Thank you so much you guys!!

This is my brief medical history.

when Dx : 11/2017

primary resected : resected at December 2017, it was left thigh, 11*6*5cm

any other distant metastases/resected or treated otherwise : right illium(resected June 2018, 7*6cm) / two skull mets(one was resected April 2018, another one was being cyberknifed April 2018, resected one was 2.7cm, cyberknifed one was 2.5cm) / right ischium(it will resected soon, 1.5cm) / right s-i joint(it will resected soon, 1.6cm) / both lung mets (multiple small mets, the largest one is 3.xcm, there are 5-6 mets that over 1cm)

chemotherapy : taking pazopanib after primary surgery, SD until now. To suppress metastasis after surgery, i have been take pazo. I think this strategy is working. Because there is no new mets after when i was diagnosed.

I send a mail to dr.Drewes(drewes@fachkrankenhaus-coswig.de->is it right adress?). I really want to Drewes says yes for my lung surgery. If he reject, i should go to LA for brachytherapy.

Hello Seth

My name is Debbie and my son Josh was dx’d in 2012.
Being dx’d is certainly so scary however it sounds like you are taking positive steps in addressing the tumors that your doctor team has found since your being dx’d in 2017.

Here is another patient , Daniel who Iives in South Korea, story on the icureasps personals .


http://www.cureasps.org/forum/viewtopic ... orea#p7585


While having your resections you are going off pazopanib to avoid possible bleeding issues correct?

The size of your lung tumors may be on the larger size for Dr. Drewes but I’m sure he will let you know what he thinks .
I sure agree with you in that the icureasps forum is a wonderful place of information and hope.

Let us know what Dr Drewes says .

Our son had both lungs treated by Dr. Drewes mentor ,
Dr. Rolle in 2013. : )

It’s nice to meet you .

Sincerely

Hi Seth,
may be you should try to find a way to try the Immune checkpoint inhibitors ICI (PD-1 and PD-L1 targeting drugs) (Keytruda, Opdivo or other of the same type) first, before going for more surgery. There are cases of it being very effective for some patients. These drugs are avail. on a clinical trial or off label. Read here: http://www.cureasps.org/forum/viewforum.php?f=70
and here: http://www.cureasps.org/forum/viewforum.php?f=73

Hi Debbie. I read Daniel's story. Thank you!!
This is reply about your question.
Yes, while having a surgery, i am going off pazo.
And i will update if i got a dr. Drewes' answer!!

Hi Olga!! Congratulations on the successful keytruda treatment of Ivan. He is my role model!


Why do you think i should try ICI before more surgery?? Because of my immunity??

In Korea, it's hard to try ICI because off-label is forbidden.

I have considered ici as the last hope. So, i want to take an ICI, when i can't get a surgery, cryo, rfa, radiosurgery or lasersurgery.

Seth, the surgeries have their side effects too - the damage to the organs is pretty big. We were going by the surgeries just becase there wasn't anything better available. In some people immune system response is very active and you might not need any surgery. Also you have other metastases besides lung mets, so it is better to try something that can be used on all of them - what if you happen to get a good response
I am also not sure that it is a correct that off label is completely forbidden - in Systemic treatment, Keytruda topic, I posted
Sample Keytruda application request for off label use in ASPS patients (updated June 2018)
http://www.cureasps.org/forum/viewtopic.php?f=76&t=1482
Discuss with the oncologist that. yes, you can not just buy and use this drug off label by yourself, but perhaps you can get it prescribed by the medical necessity reason by the oncologist. Or look for the clinical trial.
We had to fight very hard with the insurance to get that paid for, and we had to make a special request to a pharma company Merck in Canada to get it prescribed. You can contact their office in your country to find out the rules there.

I have nothing to ad at the moment, so I just want to say welcome to the forum.

Hi Seth,
May I know where do you live? I live in Seoul and do to Seoul National University Hospital (서울대학교병원) for treatment, where do you get your treatment?

Thanks in advance.

Just to point you guys out that you can communicate directly in private manner using Private messages tool - look on the right side up of the screen.

Tkank you Olga. I agree with you that surgery has their own side effects. My last surgery was done last monday, but im still tired and painful. There is no clinical trial for srcoma in Korea!! So i should find a oncologist that prescribe keytruda to me. How about cryo+ICI?? Is there an abscofal effect like radiation+ICI??

Hi Daniel! I live in Ilsan and im treated at KCCH(원자력병원)!

For abscopal effect fractioned radiation in 3-5 fractions with 8-10 Gy in one fraction for one tumor seems best for me. Ablation can also increase the likelyhood of abscopal effect.

Jussi
Correct me if I’m wrong but no more than 1 treatment per day and what you are saying is over a weeks time?
At a dose of 8-10 gray per dose ?

Deb, what Jussi is saying - it is the usual radiosurgery done as a hypofractionated SBRT - 8-10 Gy given in 3-5 treatment sessions (usually every other day or so adjusting for weekends). Ivan's was 8 Gy*4 times - every other day.
Seth - there are different ablative techniques that can be used in attempt to create the abscopal effect - radiosurgery, cryoablation, microwave, RFA. We have a member here - Jorge - he had a cryo few days before of the first Keytruda dose. We decided to go with the radiosurgery because I read the artcile re. immune response caused by the different modalities and although the cryo had the biggest response out of all, it also had the most variabilities - the responses ranged from immunosupression (the number of the needed (good) immune cells detected actually decreased in some patients) to awesome immune stimulation. With the radiosurgery the response was often smaller but never negative. Less risky in y opinion. Also less invasive and we have amazing radiosurgery doctor home, he was very supportive. Also Dr.Razak - sarcoma oncology head at the Toronto Princess Margaret Hospital who treated more ASPS patients - supports addition of the radiosurgery.

Hi Olga
That's very interesting re response to various modalities - could you please tell me the name of the article so i can have a read? Did Ivan have SBRT and did he have a good response? Did he follow up with immunotherapy drugs? Many thanks!