Cure Alveolar Soft Part Sarcoma International (iCureASPS)

So Afinitor didn't work :evil: My mom has a new tumor in her sacrum and more growth in her lungs. The areas targeted with radiation (lung, rib and right hip area) are all stable. We've decided to try an immunotherapy PD-1 inhibitor clinical trial at UCLA: Pfizer's PF-06801591: https://clinicaltrials...

Thanks so much Ivan!

Thanks for the info. Her oncologists looked at the scans and said it is actually a met to the 11th rib. Her radonc is evaluating if he can treat it at the same time as her hip area and lung. We begin radiation next week. He also said that the met in her lung has grown to 7cm and it would be too risk...

Hi Sharmaine, My mom has been fighting this disease for over 2 years now, we also live in LA area. I can 100% relate to your frustrations with insurance companies. I have cried out of frustration many times, and I think it's good and healthy to get that out when you're feeling that way. Keep perseve...

So happy to read about your positive news. I wish you continued success with this combo of drugs! I believe this is the same drug combo the new ASPS clinical trial at the university of Miami is testing. Very promising

Her doc just emailed saying we should have the rib x-rayed to see more of the fractured rib and determine cause. Does this sound right? If the cause is in soft tissue and not the bone itself would that show up? She had the full bone scan and a chest CT (fracture showed up on the bone scan, not menti...

Hi all, My mom had an anterior hip replacement last wednesday, 3/9. She's at home now recovering, in a good amount of pain but getting better each day. The doctor replaced the hip joint and scraped out as much tumor from the acetabulum as possible. In 2-3 weeks she will have SBRT radiation to the re...

I will ask her onc to send her scans to dr. Suh and refer us. I guess if insurance doesn't approve the referral we can see how much a consult would be out of pocket. UCLA is out of my mom's network. American health insurance is incredibly corrupted. It's actually sickening. Anyway looks like we will...

Happy to read Ivan is doing well. He's an effing warrior and, like Martin said, an inspiration. Lots of love to you guys.

Hi - Thanks for your replies ladies. We saw the radiation oncologist yesterday and him and his team are confident they can target the mets to her lung and hip bones with SBRT radiation. We found out that she actually has 3 spots in her right hip area: the largest being 3.5 x 3.5 x 2.5 cm in her acet...

Hi all Thank you for your throughtful replies. I apologize for not being super active on this forum, it is hard for me and our family. I know it is helpful for others to share this info, and I deeply appreciate your advice, so I will do my best to post updates on my mom's treatment and status. Just ...

Hi all - It appears my mom has developed a resistance to Votrient after one year. Growth was detected in her lungs after comparing the recent scans to the scans from a year ago. Her doctor has recommended she try Everolimus/Rapamune next. Has anyone had any experience with these drugs? He is also re...

Hi all - hope everyone is doing well. Just a quick update, my mom is still on Votrient. She's experiencing some unfortunate side effects still like upset stomach, fatigue and now a lot of joint pain. Her doctor suggested reducing her dose from the maximum (I think 800mg) down to try and help curb th...

Hi all, Quick update - my mom has been taking Votrient for a few months now with manageable side effects (fatigue, upset stomach, white hair). We'll find out in a few weeks if it is working to stabilize her lung mets. She recently received the genetic testing back from Foundation One which found a m...

Hi all, a few quick updates to share: A few weeks back my mom had a ct guided lung biopsy which unfortunately was unsuccessful. The doctor was unable to penetrate any of the lung nodules. She plans to try again in a few weeks. In the meantime she has begun taking votrient at 800mg a day. She started...