Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Bonni - what location was Brittany's spinal area met? And how large was it? Did you already know it was growing fast before it was treated? And do you think the spread was caused because the radiation treatment had failed? What type of radiation treatment was it?

Also, honestly I don't care that much at this point to stay on the rgx trial. The scans came back mixed so why should I even believe it's helping. So if I had a choice between 1) get liver and spinal area met treated and get kicked off the trial vs 2) don't get spinal area met & liver treated bu...

Okay, I will definitely press and ask more questions about the spinal area met. I hate when doctors swing in and out and don't give enough time to review scans with me. If it was up to me, I would want to have the doctor look at when this spinal area met first appeared, and how big was it when it fi...

All very good advice and suggestions. Thank you so much. I'm definitely open to cryo or RFA, or even SBRT (although I am afraid of the potential damage to nearby structure for SBRT). I would need to get my onco on board because his stance is to do nothing and wait for 2 months and see if there's any...

What about SBRT for soft tissue next to spine met?

Thanks you for the advice and info. Yes the interventional radiologist looked at the CT abdomen scan. He's pretty sure it's recurrence. I guess no one here has had Y90 embolization, but I feel like this treatment type would be less effective than re-ablating the recurrence with microwave ablation. I...

Hi Bonni, I'm probably the 1st ASPS patient to be on RGX 104. I've basically tried most treatments that are suggested for ASPS patients, so we decided to go out of the box and try RGX 104. My doc had another sarcoma (diff type) patient on RGX 104 and he/she experienced less pain at their tumor site....

So so sad and heartbreaking.

My thoughts and heart goes out to her family. <3

Hi Debbie, Liver values after ablation are stable or smaller (can't remember). Dr said it looks good after ablation based on the CT scan. Re. progression amount to discontinue Opdivo. Chest CT scan showed increased size in some lung nodules by 2-3mm...the increase in size ranges depending on specifi...

hi guys, quick update - i'm off opdivo and axitinib since it wasn't working. Just started a phase 1 clinical trial RGX 104.... I've pretty much tried almost all therapies and our oncologist and I had to think outside the box and try something else...(RGX104) https://clinicaltrials.gov/ct2/show/NCT02...

Hi all, I actually really like the doctor (Dr Padia). He's informative, listens to your questions, seems to have a good amount of experience doing these liver ablations. I would recommend him for RFA or Microwave ablation. I play to have a 3 month follow up scan w contrast. I'm weathering axitinib o...

I feel better now. The pain persisted for about 2-3 days and then the pain decreased dramatically after. Thank you

hi guys, Had my liver microwave ablation on Friday. It went well, no complications. The doc ablated with about 1 cm margin on each side...so even though the lesion was 13mm, i think the area that was treated was about 30mm total. the first couple days of recovery was very very painful because the pa...

Next infusion scheduled for Monday May 8th. They always tell me how much I'm getting each time I get infused, but I usually don't pay attention to the amount.

I'll ask onco why 5mg 2 x /dayfor the axitinib. Do you know what the standard starting dosage is for axitinib?

Opdivo infusion - I'm at the standard recommended dosage. It wasn't lowered because of my size. I asked my onco to see if I should lower it when I started, but he said no. btw - the opdivo is causing extreme itching and rash on the tops of my hands/fingers and feet. It wakes me up like 10x a night b...