Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Hey, I cannot believe I haven’t posted in such a long time but Sam has been super busy with doing wound care after his mandible tumor was removed in 6-1-21. The surgery went well but his jaw and leg where they took bone from formed wounds that are finally healing. He goes 3x a week for bandage chang...

Hey Olga, Sam hasn’t had his adrenal gland function checked, so I’ll have to ask. He still has a surgical spot that isn’t healing well so he’s keeping it covered with saline covered gauze. He has been eating blueberries and blackberries. He usually heals so quickly but this last surgery of the jaw w...

Asking for advice: My son had to go on antibiotics for a spot that was not healing after surgery so he is doing yogurt and probiotics. any other suggestions? He is more lethargic lately too, but his hemoglobin was 8 back in june after surgery. he has labs this wednesday. Thanks

Hello Ethan, first I encourage you to answer Ivan's questions regarding diet and mobility. However, I wanted to welcome you since my son has been battling ASPS since 2007 in florida( Sanford). His first tumor was removed by orthopedic oncologist (Parker Gibbs at UF Shands). We have had 2 brain, 1 lu...

Deb, thanks for your input too. Dr. Trent mentioned getting as much out of Anlotinib as possible at the moment verses switching. He had been off Anlotinib for 2 months after brain surgery so I assume that’s when the mandible met grew? I had plan to ask that question about Keytruda again at his May a...

Thanks Olga, I hadn’t considered that but will definitely look into that as a possibility. This tumor came on quickly. It is 4.7cm and involves muscle and bone. I just wonder if Keytruda would help shrink it too? Also, would like something that helps with blood-brain barrier since this is his 2 brai...

Well, Sam finished radiation treatment to right brain( frontal and orbital) last Monday and has fatigue and bad headaches off and on. Sadly, the ct of craniofacial left jaw showed a tumor.Head and neck surgeon recommend surgery for cheek and mandible by using bone from fibula. He has no pain here bu...

Thanks for posting about nutrition because my son has gotten away from this for different reasons which I felt at least helped him to recovery from surgeries quicker. His blood pressure and pulse are higher now especially once he started radiation treatment. Going to have his Vit D checked too.

Thanks Olga, although I hadn’t posted in a while, I jump on and read post especially Ivan’s. I thought I read something on his page about diet and micro. Sam was not placed on steroids this time. He started radiation yesterday which they are using the most precise beam so we had to drive alttle furt...

Thanks Deb for that article. Sam’s doctor put him back on Anlotinib ASAP since there was also slight growth of lung Mets at the initial view of the CT. He’d been off Meds for 2 months and there maybe a new spot in his cheek. He went off while healing from brain surgery and wisdom tooth pulled. He st...

Hey, thanks Olga and Deb for your quick response and I was going to ask about Keytruda or like drugs verses just doing Anlotinib with radiation. I don’t know the exact size of the remaining tumor after debulking and removing on Jan 8,but the issue is that it involves the orbit so future vision loss ...

Hello, I haven’t updated my son’s treatment in awhile since he went on Anlotinib in 2019. It has controlled lung Mets very well with the main side effect was foot and mouth ulcer and fatigue. Sadly, Sam had a brain met removed in January and will need radiation too( choose that route verses removing...

I am truly sorry to hear this news. Jussi was so willing to help others in their fight against asps. He will be missed. Sending prayers to his family.

Olga, I just want to say that I really appreciate this website for helping us over the past 12 years. I wish we had treated that pesky lung met before it caused trouble, but we were so focused on what to do with the pancreatic met at that time which is the reason we chose to do systemic verse surger...

Hello, Sam is actually on .05mg levothyroxine which brought his levels within normal range. His brain mri should a spot on the skull that looks like the same lesion that was in his femur but brain was clear. Pet scan was done as a required end of study protocol for the axi Pembro trial. Since his lu...