Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Dear all, Just to let you know that nothing substantial has changed since our last update; Elisa is still going to the NIH, and everything seems stable. We managed to get an appointment for an MRI of her thigh for next week and will hopefully soon be able to see a surgeon with the images to discuss ...

Hi Katrina, Thank you so much for your detailed postings! Reading through your lines, I remembered the sleeping problems that Elisa had for a while (and still sometimes has). We suspect that it is linked to the fact that Cediranib de-balances a few things in the body, often also the thyroid function...

Hello, It’s been a while – again! - that we haven’t updated the board on how Elisa is doing. The short answer is: pretty good. She is still in the Cediranib trial at the NCI, and her situation has remained stable for more than a year now, with the usual but bearable side effects. The CT scans in May...

Hello Allison, I just wanted to comment on the pain that you are feeling in your leg. My girlfriend Elisa has been on a similar drug (Cediranib) for 15 months, with initial shrinkage of the primary in the thigh and the lung metastases and stable disease since then. She felt severe pain in her thigh ...

Hi, Happy New Year to everyone! It's been a while that Elisa and I haven't posted an update. The situation hasn't changed much though: Elisa is still in the Cediranib trial at the NIH/NCI that she started eight months ago and continues with the initial dose of 30mg per day. After the very good respo...

It's been a while that I wanted to post this abstract of a presentation on ASPS at the 2010 German Cancer Congress (http://dkk2010.de/). The authors conclude that Trabectedin, Everolimus and Sorafenib seem to be active in ASPS. I guess the findings don't make these agents a first choice-treatment, s...

Hi everyone, Thank you for all these cheering messages you've posted! This support is wonderful. It's quite possible that the cramps and diarrhea I've experienced lately were linked to dairy products. Although I still have diarrhea a few times a week, I've been feeling much better when I avoid dairy...

Hello, It’s been a while that we haven’t updated the board on how Elisa is doing. First, the short story: GOOD NEWS! She was enrolled in the Cediranib trial at the NIH/NCI about three months ago, and the first re-staging scans showed a reduction of 23% of the biggest lesions in the lungs! To the det...

Thank you, Olga, for your quick and helpful reply. We were also a bit surprised regarding the Avastin suggestion... I agree that Sutent would probably be preferable in comparison to Avastin. But regarding the rebound effect, I am not too sure. It seems to me that this is generally a problem of anti-...

Hello, I’d like to introduce my spouse, Elisa. She is 29 years old and was diagnosed with an alveolar soft part sarcoma a few weeks ago. The primary tumor is located in the thigh (11 x 24 x 7cm), and she has multiple lung metastases (around fifty; up to 2,7cm). After the initial shock, we started to...