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Re: Ellie from England - Dx Sep 2016 at 12 yrs old

Posted: Fri Jul 29, 2022 4:01 pm
by Disco76lover
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 been experiencing headaches but after lots of questions by her oncologist, she thinks they are more tension headaches which makes perfect sense. She doesn’t take anything for them and like most teenagers, she has recently sat exams, spends lots of time on a screen and doesn’t get enough fresh air.

History:
*Primary in calf muscle, removed Sept 2016 approx 3cm with clear margins.
*Brain / bones / lungs clear
*Lung mets discovered Dec 2016 in both lungs.
*Cediranib started May 2017 which is taken daily (20mg)
*Ongoing stable disease with shrinkage in some mets. Largest met under 1cm
*yearly brain mri
*6 monthly lung ct scans

Re: Ellie from England - Dx Sep 2016 at 12 yrs old

Posted: Sun Jul 31, 2022 6:46 am
by D.ap
Hello Melanie ,
Good to hear on the brain scan .
Was it a MRI?
How’s the artifact area looking , that was reported on last year?
Love,

Re: Ellie from England - Dx Sep 2016 at 12 yrs old

Posted: Sun Jul 31, 2022 2:03 pm
by MartinBube
Great news, i was wondering are you still on Cediranib for such a long time?

Re: Ellie from England - Dx Sep 2016 at 12 yrs old

Posted: Wed Aug 10, 2022 7:33 pm
by Olga
Its for her daughter she was 12 yo in 2016, 6 years ago so she should be 18 now. Ellie is still on cediranib, in UK

Re: Ellie from England - Dx Sep 2016 at 12 yrs old

Posted: Fri Feb 23, 2024 2:38 pm
by Disco76lover
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 some time. I would love to know if they are necrotic but obviously this can’t be determined without removal which is not an option and not necessary.


History:
*Primary in calf muscle, diagnosed and removed Sept 2016 approx 3cm with clear margins.
*Brain / bones / lungs clear
*Lung mets discovered Dec 2016 in both lungs.
*Cediranib started May 2017 which is taken daily (20mg)
*Ongoing stable disease with shrinkage in some mets. Largest met 1cm
*yearly brain mri
*6 monthly lung ct scans