Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Hey Debbie,

my bilirubin values are in the norm, usually around 0.2-0.4 mg/dl. And no, not that I would know.

Hey Debbie, yes it was pretty weird to be sent to the ER without any specific reason 😅 I was also researching about the possibility of LITT, but iirc it can cause an increase of the lesion of up to ~300%? which would have definitely been too much for my 3cm lesion, but maybe it will be an option for...

Hey everyone, it has been a while since my last update. I have been on Pembro and Axi for over one year now and the response has been mixed. The 3- and 6- month update scans showed one new brain met each (~5mm) and both have been treated with SRS. Also the nodule in the lung increased by about 1mm a...

Hey, just wanted to give a quick update. Last scans revealed two lesions, one in the right lung and one in the brain. The one in the lung was a pre-existing node that showed a growth of about 2mm (so now ~4mm) and the one in the brain was a bit bigger, 8x7x5mm in the left frontal lobe. Unfortunately...

Hey Debbie, thank you for your wishes :) My oncologist told me I should recover from my cold that I have right now and just start axitinib after that. I can't tell you anything about the brain tumors, as I did not have any scans for them so far, they decided to just go with my regular schedule and c...

Hi all, I have had discussions with my oncologist the last few weeks regarding the possibility of pembro monotherapy and the side effects of axi/pembro therapy. She understood my concerns and consulted again with the head of the sarcoma center. However, she also concludes that combination therapy is...

Hi Olga, thank you, this forum and all the members contributions have made it much easier to dive into the important points of the disease. Yes, I am aware of it, also psyllium husk looks like a great addition. Judging by a quick search it looks like it is increasing those bacteria cultures that are...

Yes, that is what I found too. I think that old clinicopathological study from 1989 already noted a link between age and outcomes, though there is no definite explanation to that. Also the study from 2006 by Kayton et al. noted favorable outcomes in young adolescents, although that might be correlat...

I just checked the first report I received about the tumor in 2012. On the sonography report the tumor size was noted as 6cmx3cmx3cm (also that report mentions that I first noticed the bump at my shin in 2011 already). So it seems like it did not grew too much until 2015 or maybe just in one dimensi...

I agree with you, taking it as a good sign. Yes, I have been 16 when it was removed, one month before my 17th birthday. We noticed it first when I was around 13 years old, as my shin started to hurt when running for longer periods of time. Scans later revealed that the tibia was fractured a bit due ...

Hey Debbie, thanks for your reply. Actually I am doing quite well, physically and mentally. Since my thoracotomy I have been doing lots of active recovery but also took a rest when it became necessary. I am also following almost all of the advice already, eating clean, walking and stretching daily, ...

Hey everyone, I am Nino, 24yo from Berlin/Germany and I was diagnosed with ASPS last year. I was on holidays with some friends in Sweden in July 2022 when I suddenly experienced three seizures within a matter of a few days. MRI in a swedish hospital revealed two lesions in my brain (1cm and 0.5cm). ...