Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Amanda,

I am so sorry to hear of the ASPS diagnosis in your jaw!!! I sincerely wish you the best and am thinking about you. I liked the story of the doc hitting on you, it was very cute

Sincerely,
Cheryl (Todd's mom)

Take care, Amanda. Thinking of you and wishing you continued healing!!!

Cheryl

Yeah, I should probably work on getting those original scans from U of Minnesota. His Milwaukee doctor has them, but I would like Dr. Littrup to see them as well. I may wait till closer to spring so as to not bother Todd with it again so soon. On a good note, since Todd had his next CT scans of lung...

Thinking of you, Ivan, and hope the brain MRI is clear!!!!

Thanks all of you, all great advice!!! Nice to hear that hemangiomas also can grow. I did let Barb know a couple of times that this "spot" has grown since 2007. She had forgotten at one point, so I did remind her. I just know since they don't have Todd's complete medical records, it could ...

Sorry I have been a little slow in updating. Dr. Littrup's nurse finally got back to us about a week and a half ago. Apparently Dr. Littrup and other docs reviewed and compared Todd's liver scans and they think it is a thrombosed hemangioma, which is great news. However, I am not convinced they are ...

Thank you for all your well wishes!!! I still have not heard from Dr. Littrup regarding the reading of Todd's liver MRI. I e-mailed his nurse last Friday and still haven't heard back so if I don't hear by tomorrow I will probably try again. I am sure he is busy after vacation. Wishing you all a heal...

Todd's doctors found a liver "spot" in 2007 and failed to mention it to us. When he changed doctors in Jan. of '13, we were told that it had grown from 9 mm to 15 mm since 2007. Don't know rate of growth since abdominal scan was not taken from the 2007 one to the 2013 one. Since Jan. of '1...

Thank you for all your good advice. I am sorry haven't posted in so long, just so busy with the holidays and everything!!! Todd had an MRI of the liver and CT of lungs last week. Preliminary read (only from oncologist) is that liver met could be benign hemangioma. I am suspicious of this as I have r...

Thank you all for your wise advice. I am so on board with you. The problem is that Todd is an adult, and if I get too pushy I risk him not letting me have access to his records and reports. So far he has taken my advice, it just takes a little convincing. He does not discuss this disease with anyone...

Thank you for so kindly welcoming to the site!!!! I have been meaning to write for a long time. Todd has given me his permission to share his story, but right now is not interested in sharing directly. He is a quite stubborn and does not like to think about this disease unfortunately, so I appreciat...

Hi, My name is Cheryl Lippman. My son Todd was diagnosed with ASPS in June of 2005, on his 16th birthday. The primary tumor was in his right forearm. Surgery was done to remove that tumor followed by six weeks of radiation therapy. Everything remained stable until May of 2007 when multiple lung nodu...