Cure Alveolar Soft Part Sarcoma International (iCureASPS)

I’m sorry I haven’t updated on Sam in a while but his 10/20 brain/Occipital surgery went well( happy belated birthday Bonnie🤗). However, he developed seizure activity so he now takes Keppra. Then, in February the stupid tumor grew from the sphenoid bone again into the occipital space so he needed ra...

Sam is now just doing 3 week regimen of Opdivo without Yervoy. His oncologist may add the Yervoy back in the future if needed. He has begun pre op for removal of the orbital tumor on 10-20. We are very happy that the skull met is no longer visible on the MRI and his sternum met has “melted away.” Af...

Just a quick update: the neurosurgeon wants to remove the growing orbital tumor since it’s causing pain and vision issues. Also, she recommended replacing the metal plate with a fake bone since these plates deteriorate overtime. Good news is that skull met has disappeared and everything else has sta...

Thankfully, Sam is healing nicely from jaw surgery. His CT scans showed decrease in lung Mets, stable sternum and rib Mets,but the pesky knee tumor has caused a lot of destruction so he will need knee replacement surgery possibly next month. There is also a concerning area in his right hip which may...

Hey, Sam is healing nicely from having the plate removed from his jaw and had his 4th dose of Opdivo/yervoy. We are hoping the immunotherapy will work better by eliminating the chronic infection. He will have scans done 8-28 so hopefully I’ll report positive news! Also, he has slight case of thalass...

Just wanted to do a quick update. Sam wasn’t prescribed any steroids, but his diet has been affected by the wound in his jaw from his surgery 2 hrs ago so a new doctor recommended he remove the plate in his jaw. We think the weight gain is from too much ice cream and donuts and limit exercise due to...

Thanks for the positive update!

Sending prayers to you today and please post when you are able to do so.

Thanks for sharing an update on your sweet Brittany. I’m so sorry to hear that she has a lot of pain, numbness,and unexplained seizure-like symptoms. I hope the doctors can manage her symptoms and determine the cause of it too. This disease is certainly challenging and I appreciate you guys for shar...

Just a quick update on Sam: The thoracic surgeon presented Sam’s case to the tumor board to evaluate for lung “wedge” surgery due to increase in lung Mets, but surgery isn’t recommended at this time. There was increase in Mets in his rib, sternum,and femur, but his right knee met has shrunk with rad...

Thanks for the update and I hope you are adjusting to life in Georgia. I’ve heard good things about Emory so I hope they find the right systemic treatment. We will be discussing a new systemic treatment for my son as well since he had progression. One option mentioned is the opdivo/ Yervoy too. Send...

Unfortunately, after 3 infusions of Atezolizumab, Sam has had Mets in his left rib, sternum, and hip increase in size. Also, many lung Mets have grown which most of these spots have been dormant for many years. He is doing radiation for the knee which has helped with the pain. The plan now is to mee...

I guess all the doctors who viewed his MRI are sure it’s a tumor verses a cyst so he had his first Atezolizumab infusion yesterday which I am hopeful It helps him since he’s had progression these past 2 years. He is excited about this new medicine but not too thrilled about radiation. However, he wa...

Yep, it was an mri of the femur. The surgeon called it aggressive and destructive but I’m afraid his leg ct were done 6-2021 and xrays and sonogram 12-21. This ongoing wound care of his left leg has really affected him in 2022. The idea is to hopefully shrink it with radiation and new Atezolimunab m...

This knee/ femur met wasn’t there last year but it was called aggressive by 2 MD’s since it grew large and fast.Sams been on a lot of antibiotics this past year which I don’t know if that’s related or not. The orthopedic surgeon wants to do radiation and change to Atezul medicine to see if we get it...