Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Dear Connie,
I am so sorry, we haven't been here for long, but we feel that this site is part of our family journey.

Take care.

Damian and family.

Thanks for your thoughts and kind words.
This popped up 10 minutes ago:
http://www.bbc.co.uk/news/health-29756238

Damian

G'Day everyone, It's been a while, but that's OK as Annika is doing well and is having a good and mostly normal school year, great compared to last year! We have our next scans in January during the summer holidays. I research extensively daily, mostly trying to catch up to people here who have vast...

Hello all, I had an interesting conversation today with a doctor I met through work. It is interesting that is seems that many doctors are resistant to pursuing surgical clearance of tumours as the first course. He'd never hear of ASPS, but he was dubious as I described how it is chemoresistant and ...

Fantastic new Amanda! I'm glad it went well, thanks for sharing your journey so that others can learn.

Dear Kat and Damian, Happy belated 9th Birthday to dear Annika and greatest shared happiness for the VERY good results of her most recent scans and the return of strength to her arm :-) She is truly an amazing and very courageous little girl and I know how very proud you must both be of her :-) G'D...

This was interesting; http://www.cell.com/cell-reports/abstract/S2211-1247%2814%2900527-0?_returnURL=http%3A%2F%2Flinkinghub.elsevier.com%2Fretrieve%2Fpii%2FS2211124714005270%3Fshowall%3Dtrue?_returnURL=http%3A%2F%2Flinkinghub.elsevier.com%2Fretrieve%2Fpii%2FS2211124714005270%3Fshowall%3Dtrue Shutti...

Thanks for that info. I've been reading about aldoxorubicin being effective in some lung cancers and STS, also the NK92 natural killer cells look interesting. Now that they have a line os ASPS tumours xenografted into skid/ncr mice, I hope they are testing all available treatments to see what works....

Thanks for your words, it's such a relief to hear "clear scans". Our neighbour has just been diagnosed with small cell lung cancer and is suffering badly, we haven't told the kids. They caught his tumour while checking his pancreas, the edge of the CT showed the base of his lung. He has on...

:D Annika's MRI and CT are clear! The surgeon was very pleased with her progress, her arm has full motion and nearly full strength despite her losing 75% of her triceps. She is up to 1kg weights for her skull crushers and she needs 1.25kg ones, she does stacks of physio! Our onc wants to see us in J...

What exactly is a bone scan? We'd like a full body MRI.

Dear Damian, Thank you for your thoughtful update with the wonderful news of dear little Annika's good scan results from her April MRI :-) I am so happy for all of you and share your great joy and relief :-). From your update I assume that the only scan that was done in April was an MRI of Annika's...

April scan clear! We went back to SCH (Sydney Children's Hospital) and Ronald MdDonald house in April for our MRI. This went well with Annika being her normal cheerful tough self. Our oncologyst was away however and we went home before we got the results (we live 5 hours away). After some chasing, w...

Hi, Just checking in. Annika has just had her second round of post-surgery scans (we are now 6 months after diagnosis). She had an MRI of the primary site and a CT scan of her chest (they did a fine res of 0.5mm). Both scans were clear! Hope that the new year brings much good health, good news and g...

Hi Everyone, Thanks for the comments and advice so far. Olga, my research has backed up what you have said about brain mets usually only appearing after lung mets and this has been the justification for not doing a brain scan as explained by our oncologist also. I will try justifying the scan in ter...