Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Yes my main onc definitely understands ASPS...and that asps is radio resistant...but SBRT is a different and much much stronger mode of treatment. Saw my onc today and it seems like we may be leaning towards doing surgery for the paraspinal met. We will continue anlotinib for one more cycle (2 weeks...

I see thank you. I consulted with an orthopedic oncology surgeon, and he said he could do it but he wants to consult with the radiation onc and my primary oncologist all together in one room to discuss what's the best mode of treatment. He doesn't want to subject me to a surgery if not necessary.......

Thx all Yes i'm still on anlotinib. Still trying to see if i can get cabozatinib. Insurance already denied it twice. Your advice is obviously wise - i will need to consult the doctors specifically because treatment risks / pros / cons depend on location and size of met. Anyone have experience of fas...

Is there evidence that surgical removal of a met can create abscopal effect?

Also if you're not sure if it's a met or not, a scan of some sort can't show if it's truly a met?

Which is better to treat my 1cm muscle met near spine?
1) Resection via surgery
2) SBRT Radiation
3) Ablation

Thx everyone.
I tried Opdivo with vandetanib for 3 mos, then opdivo with axitinib for 3 mos in the first half of 2017.

I might of even taken opdivo maybe in 2016 or 2015...i can't remember off the top of my head....

Find out, what specialist, who is going to treat soft tissue met thinks is too close to a spine to treat. Looks like sooner or later you will unfortunately have to deal with this met, so I wouldnt risk it becoming too big or too close to a spine. Asps usually grows slowly, but if this met suddenly ...

Jen Truly glad you all are exploring options !:) https://www.cureasps.org/update-on-alveolar-soft-part-sarcoma-clinical-and-preclinical-studies-from-the-annual-meeting-of-ctos-in-november-8-11-2017/ What is biggest lung met ? Has radiologist seen any mets disappear ( lung or otherwise) over the cou...

Has anyone tried cabozantinib? I think this might be similar to pazopanib...

My onco suggested cabozantinib IF I do decide to stop anlotninb and treat the muscle met near spine.

I'm not sure what Post-op high dose proton radiation entails, but SBRT is usually a 1 day treatment since it's super strong radiation. How many treatments were Brittany's high dose proton radiation? Over a couple weeks? My onco just said that i have to discontinue and stop Anlotinib clinical trial i...

Hello again dear Jen, We had no idea that Brittany had a spinal met until she became symptomatic with cervical/thoracic back pain for which we immediately requested a spinal MRI. Heartbreakingly the MRI showed a large spinal met which had inexcusably been unreported by the negligent radiologist in ...

Jen I echo Bonnis suggestion of certainly taking care of the spinal met. And also Olga’s observation of possible rebound happening ? There are a multitude of immune therapy choices to move to from your EGFR Med . I realize you’ve tried Opdivo but there are more out there . What does "ICI"...

Dear Jen and Olga, Based on our experience with Brittany's spinal met, I think that ANYwhere in the back is too close for an ASPS met!! Had Brittany's spinal muscle met been reported and treated when it first became visible, it would not have progressed to the point that it was threatening spinal c...

Jen, are you still on anlotinib? The SBRT treatments are pretty good if you are on ICI drugs as the means to cause the abscopal effect but with the TKI drugs there are precautions that needs to be taken. Besides it looks like there is some small progression already happening on this drug, so you mi...

D.ap wrote:Hello Jen : )

Were you tested by the way of your primary of the EGFR mutation ?
And if so what were the results ?

i don't know....they've tested something with the primary a couple years back...but don't remember what....

=/