Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Hello everyone.my name is lee,andim from china.I'm glad to find this forum and so many kind friends here.
im sorry that my english is so poor.
I'm posting for my sister jessie,who is 29 years old.jessie was diagnosed in oct 2012. she had a lump in her pelvic cavity—about 10X12cm.she felt pain on her right hip since May 2012.but she thought it was not serious.untill oct ,it was worse.she took ct and mri,and they showed that her lump was in retroperitoneum,its too large to take a surgical excision .
i want to know if there is anything we can do ?
i have asked many doctors in china,they cannot offer a proposal.
I feel exhausted, confused.
Im looking for your advices.
thanks

Lee, hi, welcome to this forum,
Please do not worry about the language problems, it is not important and it will not interfere with the communication on this board. As long as you need to ask a question - we will try to understand it.
We have few people with the similar location of the primary. Most of them finally underwent a surgery to resect it although it took a time to find a surgeon that is willing and able to do it. I realize that travelling to US to have a surgery there might be not an option for your sister as it is very expensive here so I would continue to look for a daring and experienced abdominal surgeon in China. It is also an option to do a staged treatment and to try to have some local treatment to the primary such as cryoablation, radiosurgery, embolization to try to reduce its size to make the resection possible later.
If none of the above is possible, she might enroll into the clinical trial for cediranib drug at the NCI in US and they will pay for the drug as it is a study and for the flight from the US airport - she still needs to pay for the flight to Seattle or LA or SF and she needs to live in Bethesda for few months initially and to come for a check up on schedule later. Cediranib is a drug that is tested in ASPS patients and it is not known yet if it is going to prolong the lives of the patients or just to help them temporarily to stop the disease from growing. We had numerous people on this board participating in a trial and they had different experiences.

In our experience, any drugs are more effective on the metastases than on the primary especially when it is that big. For the bigger ASPS tumor, surgery is the best option.

Olga wrote:Lee, hi, welcome to this forum,
Please do not worry about the language problems, it is not important and it will not interfere with the communication on this board. As long as you need to ask a question - we will try to understand it.
We have few people with the similar location of the primary. Most of them finally underwent a surgery to resect it although it took a time to find a surgeon that is willing and able to do it. I realize that travelling to US to have a surgery there might be not an option for your sister as it is very expensive here so I would continue to look for a daring and experienced abdominal surgeon in China. It is also an option to do a staged treatment and to try to have some local treatment to the primary such as cryoablation, radiosurgery, embolization to try to reduce its size to make the resection possible later.
If none of the above is possible, she might enroll into the clinical trial for cediranib drug at the NCI in US and they will pay for the drug as it is a study and for the flight from the US airport - she still needs to pay for the flight to Seattle or LA or SF and she needs to live in Bethesda for few months initially and to come for a check up on schedule later. Cediranib is a drug that is tested in ASPS patients and it is not known yet if it is going to prolong the lives of the patients or just to help them temporarily to stop the disease from growing. We had numerous people on this board participating in a trial and they had different experiences.

In our experience, any drugs are more effective on the metastases than on the primary especially when it is that big. For the bigger ASPS tumor, surgery is the best option.

thanks for your help.
we found a doctor in beijing .and the doctor said that aboat 30% patients have good effect on chemotherapy.so he asked us to take this therapeutic method for 2 course.and if it dose work, and the size of the tumor is reduced .then she can take a surgenry.but as i known from all the articles that chemotherapy is useless.but we have no choice but to take this method.
i mentioned embolization to the doctor.but he held the view that the tumor in pelvic cavity can not get a good result.because there are too many vessels support the tomur.embolizationto can not block the right vessel.
as for the cryoablation,i wonder know that if it can used on the tumor which has many vessel.
and there are some nodules on her lungs.the biggest one is 1.5 cm.
actually,we dont know what to do .
and thank you very much.i dont know how to express my feelling.but just so kind of you all.

Lee
I hope you have found some resolution to Jessie's tumor shrinkage/removal
Please update when you can
Sincerely
Debbie, Joshua's mom