Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Positive update: 🌻 Ellie, my daughter who is 19, has just had a body ct scan with contrast. I am pleased to report that there was no new lung Mets and no growth. We are now nearing 8 years since the diagnosis of asps and 7 years since Ellie started cediranib. The lung Mets have been stable for quite...

Ellie has just had the yearly mri scan of her brain. I am pleased to report that there was nothing showing up. The radiologist still needs to report on it but the oncologist has had a good look and she’s very happy. Ellie has also put on a few pounds in weight since April which is great. She has bee...

Thanks Debbie ❤️

Ellie has just had ct scan of her lungs. I am pleased to report all stable with no growth, no reductions and no new mets. These scans have moved to 6 monthly so the next one is in October. Ellie has also put on weight which is great. She had some breathing difficulties a couple of months ago which w...

Hi Sandra, like you we are also from the UK. My daughter was diagnosed 6 years ago and her primary was also in her lower leg (calf muscle). This was also removed with clear margins but unfortunately has also spread to her lungs. She has been on cediranib for 5 years which has kept her pretty stable ...

My daughter has just had her 4 monthly lung ct scan and things look stable. So much so, the oncologist is moving her scans from 4 monthly to 6 monthly. This is due to prolonged stability / reduction. Less radiation will be good too! History: *Primary in calf muscle, removed Sept 2016 approx 3cm with...

Good news!! The suspected abstract on the yearly brain mri was just that. An abstract!! Phew. 🙏😊

Thanks Ivan.

Treatment seems to have come on a bit in the 5 years since Ellie was diagnosed but do you think there is ever going to be an end to this cancer? 🙄😢🙏

Thanks both. I’ll discuss with the team 👌

In the oncologists words she wouldn’t give a size as the whole team of oncologists and radiologists are sure it’s an artifact and assured me not to worry. She was a little annoyed as one person said to do a scan hence causing unnecessary worry. I am trying to take comfort from the fact the “artifact...

I’ve just received a phone call from the oncologist advising that there is nothing to worry about but the brain mri scan is showing a “fleck” on one of the slides. It isn’t showing on the many others of the same place. The team (radiologists and oncologists) have carefully reviewed and discussed and...

Thank you Olga. The oncologist has never given us an exact figure just that there are many! I like figures as how do you quantify the word many? I’m not sure if this the norm with oncologists? But, I appreciate it’s difficult to quantify if there are lots but I would like to be able to see or know h...

My daughter, age 16, had her yearly brain mri scan on Friday and it was good news and all clear. ❤️ The ct scan she had in June, to monitor her lung mets which has now been reported on by the radiologist, showed stability. ❤️ I did ask what the largest lung met measures and it is 4mm. This is in con...

I know Olga, time has flown by and I sometimes can’t believe she’s 16!

So thankful for cediranib and how it is keeping things stable. Long May it continue

Thanks Janice, you too. X

My daughter, aged 16 years, had her lung ct scan yesterday. She’s on cediranib and has been on it 4 years gone May. She is having 4 monthly ct scans along with the bloods and other routine checks. 1 brain mri per year (Ned) I’m pleased to say the results of yesterday’s scan show stable disease with ...