Cure Alveolar Soft Part Sarcoma International (iCureASPS)

She isn't on treatment, no. Her scans from the first week of September were clear save for this large mass in her upper right lobe. But it was stable. In the past 4 weeks it grew significantly. Her pulmonologist performs cryroblations, not the same type of specialist as the Dr. in Detroit. He says h...

The location of this tumor is too close to her heart / center for resection. It is not an option. The bronchoscopy clears the airway and stops the bleeding. Yes her brain tumor was positive for ASPS. Her pulmonologist here at UCLA is very good at this specialized type of bronchoscopy to “debulk” the...

Hi guys, My mom has been healing and has recovered an amazing amount from the brain injury caused by the brain met. She completed targeted brain radiation to the resection area last week. She’s regained 85% of her cognitive functions. She has been having random focal seizures since the surgery, and ...

Also... since my mom was already on an anti PD1 immuno trial, she likely will not qualify for another, correct??
What is the likelihood of getting Pfizer to give her the drug that worked so well for her on the trial 2 years ago as compassionate use?

Thank you Olga. I will make sure to ask this of her oncologist at UCLA when we go see him. They did a brain MRI before the resection which showed the mass, but from my understanding it also showed bleeding so the image of the tumor is not super clear. The surgeon told us that the post OP MRI showed ...

I have not read scan info for exact location and measurement but I do know was in the Occipital Lobe. Her memory/speech has already improved significantly since Wednesday which I believe is due to the swelling decreasing. So my mom got really bad neuropathy while on the clinical trial where she was ...

Hi friends, Sorry I haven't been on here lately. My mom recovered from the lung abscess in January and started Keytruda. She received 3 rounds of it but her neuropathy came back so they discontinued it. Unfortunately last Wednesday my mom was rushed to the ER for what ended up being a brain bleed ca...

Hi guys, thanks for the advice. My mom finally got to go home from the hospital after one full week admitted. She’s on a 4 week regiment of two antibiotics to treat the abscess / post obstructive pneumonia and extended release morphine + lidocaine patches for pain. She also had to go home with oxyge...

Olga - we asked about cyroblation but three doctors( albeit not cyroblation specialists) said this spot is not a good place for that therapy. I’m not sure about surgery to remove it... they’d have to remove her whole upper lobe I think? Also very concerned about any general anesthesia after the late...

Hi Debbie,

They tested her sputum and said it's only showing anaerobe bacteria. So it must be that. She had a PET scan in August, and recent brain and pelvis scans within last 6 months. She's not sure when exactly and I don't have the records.

Also - just to clarify, the clinical trial was extremely effective for my mom. It completely evaporated the numerous, "countless" mets in her lungs except for this one large mass that shrunk and just remained stable for a long time. We thought it was just dead tissues and scarring from the...

Hi All, It's been a while since I logged into this forum. Just been trying to pretend the disease doesn't exist I guess. My mom has also been in good health so we've been enjoying that. She had to go off the clinical trial about a year ago, and we were just monitoring with scans every 3 months. She ...

My mom continues to see tumors shrink & remain stable on the trial! Her doc is very encouraged and said she is having the best reaction of his patients on the trial. Target lung lesions: Lesion 1: September 2016: 14 x15 mm Feb 2017: 4x3 mm Lesion 2: September 2016: 16 x 14 mm Feb 2017: 6x4 mm Th...

We got the results back from my mom's first scans on the trial. Good news! No new tumors, the smaller tumors in her lungs have DISAPPEARED! The larger nodules in her lungs and bones got bigger, but that may be because her T cells are invading and battling the bad cancer cells. Her onc is encouraged,...

I haven't heard of Anlotinib, but it looks like a promising TKI that has been in trials in China: "With regard to STS subtypes, several appeared to derive more benefit from anlotinib than others: 69.2% of leiomyosarcoma patients were progression-free at 12 weeks, as were 76.92% of alveolar soft...