Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Hi Olga, Thank you again. We are taking your questions with us to NIH on Monday. 1. they used Ct and MRI - A biopsy was done on a lymph node about 6 months ago that showed both live and dead cells. We will be asking again about a biopsy. 2. Yes, this is a different met than the on in the spine - tha...

Thank you all for reaching out and helping us navigate the next steps. We are heading down to NIH to discuss options on Monday. Here is what we are being told so far. The sacrum (bone) appears to have more extensive involvement of bone. The radiologist compared it to the one in January and felt it i...

Olga and Debbie,
Thank you so much for your responses. I have taken all of your questions to Dr. Chen at NIH. I also copied Dr. Burgess at UPMC. I will let you know what we find out. I am thankful for the help.

Kathy

Hi Everyone, I am writing with the news that Tom is no longer on the Atezolizumab trail. His recent scans showed a new tumor in the sacrum. He had another tumor in his ribs that was treated with radiosurgery and they feel that one did not respond. I don't have a lot of details as he took the call an...

Hi Everyone, Tom has had 5 bowel obstructions in the past year. 3 since November and 2 in the past month. His surgical oncologist decided it was time for exploratory surgery to see what was going on. They thought they would find scar tissue, tumor, a kink...but they found nothing. They said they wen...

It has been too long since we have posted but we are always reading updates and keeping you all in our prayers. We learned that while most of TJ's tumors are responding to the trial(we are so excited and thankful for this), there is a tumor at the S2 vertebrae that is not. Every other tumor has eith...

We are very thankful to report that Tom's tumors continue to shrink. We were told that there is nothing new, 2 of the lung tumors have shrunk by 40%, and one of the previously treated Brian tumors is completely gone. Thy also said the troublesome L4 tumor is smaller. So far Tom feels really good esp...

Hello everyone, It has been too long since we have posted and for that I apologize. Tom started the following trial at UPMC this past June. https://clinicaltrials.gov/ct2/show/NCT03141684 His last scans done 6 weeks ago showed no new mets, 2 mets in the lungs were smaller as well as the met at the l...

After learning that more tumors have shown up in the lungs and others have grown slightly, Tj and his oncologist agree that he will start the immunotherapy trial this summer. It should be ready to start in Pittsburgh in June or July. Until then we pray everything stays in check. The brain tumor that...

it is showing up and has showed up on the pet scan, but hasn't been detected on the ct scan. Not only is it showing up on the petscan but it has increased in size when compared to 2 years ago. What other testing or scan could be done. I don't want something to be missed or assumed to not be an issue...

Hello Everyone, I need your help in explaining something to me. TJ had a CT scan last week to get a better look at everything in the lungs and abdomen. This test was done at our local hospital. The report was faxed to Dr. Burgess in Pitt but we are mailing the actual scan to her today. She called TJ...

Hello Everyone, We are eager to hear your opinions and advice on the latest with Tom. He has been taken off the Votrient. He never felt good on it so although it did not work, we are trying to remember the comments of our youngest when she found out. "Oh phew, now we can find something that wor...

Hi Everyone, It has been a while since I have updated you all on how Tom is doing. We don't have a lot of details as we have not read the reports, but we are being told the Votrient is not working. There is increase in the L4 and small increase in a few lung mets and a new spot showing "2.2 cm ...

I should add that we have had no luck with Sloan Kettering. They said that they could not operate and had not other options at this point but to keep in touch. This was certainly not the news we were hoping for. Tom's oncologist is reaching back out to them to get a more detailed explanation then th...

Hi Everyone, TJ had a check up with his oncologist yesterday. They are going to increase his dose of votrient to 600mg because he is tolerating the 400mg so well. Scans will take place in a month. His blood pressure and blood work were all good. He continues to amaze me at his strength and faith. I ...