Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Hi Everybody,

I'm 25, had pains for years and complained to the doctor but it wasn't until 4 months after a misdiagnosed hernia (surgery) that they found a primary 12cm tumor in my pelvis. The surgery made the pain worse and the doctors kept prescribing me different pills but I insisted there was something else, that something I could feel was ASPS which was diagnosed about 7 months ago. I've been on immunotherapy (Pembro 200mg) and Axitinib 5mg but unfortunately still have metastatic spreads to my spine, lungs and the base of my cranium. I was pulled off those meds very recently and my oncologist is now recommending sutent after I get surgery on my spine to remove the spread and repair my fractured T1 vertebrae. The primary growth in my pelvis has remained fairly stable throughout this time, however the side effects of radiation to that area were hellish.

I met Ivan who put me onto this forum and I'm now seeing the enormous value here. I'm feeling a little overwhelmed now that I'm 7 months into treatment and basically going back to square 1. I hope my knowledge can help everyone here.

Hi Dominic,

Welcome to this forum. Ivan is great and so are many knowledgeable people here like Deb, Bonni, Jussi and of course Ivan’s mom Olga. They have all helped me tremendously. My name is Nhi and I was diagnosed in 2016 with primary to my right gluteus Maximus muscle now with spread to the lungs and bones (also cranium and spine like you along with right iliac and manubrium bone). I was on Sutent initially with stability of my lung Mets for about 2 years until I developed the bone mets. The TKIs do work, but seems to work with less tumor loads and it seems to get less effective over time with sometimes pretty terrible side effects. You were on a very good combination of meds because Axitinib is also a TKI And it suppresses the growth of the tumor while Pembro works on your immune system. Unfortunately immunotherapy doesn’t work for everyone and they are all trying to figure out who it works best for. Did they ever remove your very large pelvic tumor or only did radiation to the area? What kind of radiation was done and the timing associated with when you started your treatments with pembro/axitinib? Was it the only medications you tried? Showed progression steadily or was it stable ever on that combo? And could you be more specific in your time line with the sequences of events? Sorry for the million questions. It’s nice to meet you, unfortunately in this situation, but we all keep going everyday to fight this awful disease.

Love,
Nhi

Hello Domenic

My name is Debbie and my husband and I have a son, Joshua that was diagnosed at 32 years old in 2012.
He is just starting the pembro/axitinib combination after being on Opdivo for 3 years with great success.

Here's that link to Josh on opdivo
viewtopic.php?f=82&t=1297

Here's his personal accountancies-

viewtopic.php?f=4&t=750

I too wonder how your oncologist ( sarcoma doc?) decided the pembro and axitinib were not working?
And also your time line over your 7 month treatment to date.

I wanted to assure you that there is lots of good information to be found on icureasps, and the folks here are contributing good information every day to our so very rare sarcoma understandings.

Keep the faith and nice to meet you.

Hi Domenic, welcome here. I am Ivan's mom Olga. Thank you for posting the story and contributing to our group sharing your info with us.
When is the surgery? Good luck with it. Let us know what the pathology report says after the surgery, it is important to know how immunotherapy affected this metastasis composition.

I just want to tell everyone that Domenic has successfully undergone surgery as planned and is recovering well.

Good news Ivan.
Thanks for the update !

Domenic,

Here’s to a speedy recovery !
Love