Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Thank you so much Olga and Bonni for your quick responses! We will continue to seek your guidance and support, and we are so grateful for it. I am glad you picked up on my frustration, and support my want for better care for our girl! I did ask about clinical trials, but that too was pushed aside. I...

Hello everyone! We had our CTscan and bone scan done in November and had follow up this past Monday. Bone scan came back clear and Ct Lungs came back unchanged! We had to move her brain MRI, will be done at the end of December...Dox/Ifosfamide chemo was brought up again, but they even said they don'...

Hi Ivan, Thank you so much! I have read your story, gives me so much hope! She had her first CT scan done August, (after the PET/CT scan) so they will schedule her in in November. It will give her the month of October to get back to grade 12 and some normal teenage life! I will definitely be inquiri...

Thanks guys! Appreciate everything!

Good Evening All! Surgery went well! Surgeon says he got CLEAR margins, had to take part of her shoulder joint (which he repaired) and 25% of a nerve bundle, but did say that he was able to move her shoulder while she was still under. It was a pretty major surgery, she is recovering nicely at home, ...

Thank you so much everyone! Surgery tomorrow to get this thing OUT~ !! Will post after surgery! I am so grateful for this board and the support that we have received so far!

Hi again..thank you for your replys, genuinely appreciate them. Quick update... Orthopedic Oncologist was on holidays, so did not get a chance to discuss their proposed tx plan until today. However, a week ago, she did have a PET/CT Scan done that came back clear other than 2 nodules of suspicions o...

Thank you Debbie, your sons story gives me hope! We are seeing an Orthopedic Oncologist , who specializes in Sarcoma. There is a Sarcoma team here in Calgary and we will be treated by them. We did ask about just doing surgery and they seemed to skirt around the request. Thats why we are seeking anot...

Ugh... I have been reading and re-reading all the posts here for the past 2 weeks. My heart goes out to all of you and celebrate all your successes. My daughter was just diagnosed with ASPS, she has a 6.5 cm tumour on her shoulder. This process started back in May, when we first noticed the mass. We...