Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Thanks everyone, Ntran - yes Annika just had the two surgeries, and lots of scans.... Have fun in Sydney.
D

Hi all, Sorry it's been so long, we've been incredibly busy. Annika's scans this month are clear and our onc says that we're boring and healthy. Annika continues to grow quickly and is happy and healthy. We had fun summer holidays and school has started again, Annika is in year 6, the last year befo...

Hi MJ,
I seem to remember reading somewhere that even if there is rebound from a brief treatment gap, that it can help as the cancer cells "rev up" and then get the drug again, as they are more active it may hit them harder.

Damian

Here we are at Perisher, Annika is front right, crazy girl!

Thanks all for your posts, Annika is very well and is happy at school and she is playing soccer and netball for the town teams. We went to the snow with Camp Quality recently, it is really helpful for the kids to play with others in the same boat, and good for us to talk to other Onco parents! Zak i...

Hi all, Annika's MRI and CT are clear! We've just been to Sydney Children's Hospital Randwick, all good,the Onc is very happy with her and says she's growing in perfect proportion, she's grown 70mm since Christmas! She's also 11! Where did that go? He wants to see us in January for the usual scans. ...

Hi Debbie, Thanks for that, I'll have a look in a sec. I'm fairly convinced that cytotoxic chemicals are not the way with ASPS, at least our ones currently. So I"m after anything that sets ASPS apart from normal cells, so that the difference can be targeted to destroy ASPS cells without massive...

G'Day everyone, happy Australia Day! Just a quick question, does anybody know if ASPS is upregulating PARP? There has been quite a few articles about PARP inhibitors lately. I fact, do we have a breakdown of what ASPS commonly expresses? This was interesting: http://www.nature.com/ncomms/2015/150810...

Dear Bonni, Yes it was surprising how the options are not all explained, we have found time and again that we research something, and query the team, and they say, sure, we can do that or will look into it. I'm amazed that all options re scanning and treatment aren't on the table when you visit your...

Thanks Olga and Bonni, I was hoping they could extend the chest CT down through the abdomen, I'd love a MRI instead, but I think the chance of getting that is remote. I do know a radiographer, I might talk to her about radiation dose from the larger scan, I'd like a baseline scan. I'm sure that you'...

Dear MJ,
I'm so happy that you will get to enjoy the cruise, Annika would love it, so I'm sure that Priarie will to.

Damian

Thanks Bonni, exactly my thoughts re the scans. I might start a dialogue with our onc about scans and mets and slowly and gently nudge him towards being concerned about hidden abdo mets.... The only scan Annika's had of her abdomen was the original PET scan, which I regard as mostly useless as it di...

Thanks Olga, Yes the rare cases are what concerns me..... ASPS is so rare that I don't even think statistics are of much use, the numbers are just too small, all we can say is that "most" cases get lungs mets first.... I don't like the extra radiation, but I may request the abdo CT to chec...

Hi Bonny, thanks for that post! The kids are enjoying their summer holidays, but they were shocked when I said school is now only two weeks away! Oh well, they're enjoying the beach and bike riding. With the scans, I had to drag our onc team kicking and screaming to get the head MRI, I wonder if an ...

I just read Meng's update with medi4736, more to look up! Exciting stuff.
It is a bit scary, but ASPS is so sneaky we need the breaks off!