Ellie from England - Dx Sep 2016 at 12 yrs old

[Disco76lover]

Thanks Olga. Hopefully it will continue to work for a long time x

[Disco76lover]

My daughter had her 4 monthly ct scan yesterday and it showed her lung mets are stable. She was diagnosed with asps in her calf muscle, September 2016, with no sign of asps elsewhere in her body. She had the tumour removed 2 weeks after diagnosis with a clear margin.
Three months later there were lung mets found on both lungs in a routine ct scan.
Cediranib was started in May 2017 and this drug has halted the fast growing mets and has even started shrinking them. We saw a year or two of the mets not growing and then the past 12 to 18 months we have seen the mets start to reduce in size. Her mets are all below 1cm with the majority 5mm or less. The largest is 8mm.

[Olga]

Thank you for this very positive update. It is going in a right direction and we sure hope the mets will all disappear in time. Are there any prominent side effects from the cediranib long term that you notice? It is already 3 years on it, correct?

[Disco76lover]

Hi Olga, yes Ellie has been on the drug a while now, 41 months to be exact and the side effects are minimal thankfully.

She does have sore hands and feet at times as well as toilet issues but nothing that stops her living life as a normal teenager.

Whilst talking to the oncologist on Wednesday, she did say that these new drugs are just that, new, and therefore we don’t yet know the long term effects they may have. They might give her a break from taking it, in the future, but as of now there are no plans to do so.

[Disco76lover]

My daughter had her lung ct scan in Feb. She’s on cediranib and will have been on it 5 years in 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 the last scan show stable disease and shrinkage in a couple of the mets.

Primary in calf muscle removed Sept 2016
Brain / bones clear
Lung mets discovered Dec 2016
Cediranib started May 2017

[Olga]

I am so very happy to hear re. Ellie continued success with cediranib. Perhaps one in 6 months CT scans would be ok, or once in 4 months but alternating with the simple X-Rays - then the obvious rapid growth bill not be missed if it happens but the radiation exposure will be greatly reduced - I know that the alternating regimen is used if the long term surveillance is done on a young patient.

[D.ap]

Melanie ,

Excellent news!!
Good to hear from you .

Love ,

[Disco76lover]

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 shrinkage. I should add that for the past two years, we have seen shrinkage each scan.

Radiologist will confirm in more detail in a week or two but we are very happy.

Primary in calf muscle removed Sept 2016 approx 3cm with clear margins.
Brain / bones clear
Lung mets discovered Dec 2016
Cediranib started May 2017

[Olga]

I can not believe that Ellie is 16 now! Good scan results, continued shrinkage. Cediranib is uniquely active in ASPS, I am not even sure if it is approved for other indications yet?

[Janice]

So glad to hear Ellie is doing well. Thank you so much for the continued updates. With such a rare cancer - mom's like me continue to watch other's journeys and rely on those who have gone down the path ahead of us. Joy be with you and your daughter.

[Disco76lover]

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

[Disco76lover]

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 contrast to 1cm around 12/18 months ago. I don’t know whether to be concerned that this scan has shown stability whereas the past scans have shown reduction. 🤷🏼‍♀️ Don’t get me wrong, we are ecstatic and grateful about the stability but I wonder why no reduction this time?!

I did ask the question about the Mets being dead or necrotic (I think that’s what they call it). The oncologist advised that this could be the case but we won’t know as cutting them out for testing is not an option which I agree with.

Primary in calf muscle removed Sept 2016 approx 3cm with clear margins.
Brain / bones clear
Lung mets discovered Dec 2016
Cediranib started May 2017

[Olga]

Melanie
the heterogeneous response from the mets is the usual thing and also the ability of the specific organ tissue to dissolve the necrotic tissue is different. Lungs are very soft and it can stay there for longer. There is nothing really to do except monitor carefully, also ask them to map and quantify the several mets in the reports and want the sizes. Ask to compare the sizes with the longer interval also such as 6 months or a year. Overall the result is excellent.

[Disco76lover]

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 how many aren’t there now or out of the many, how many have reduced and by how much?

I haven’t pushed this though but will definitely ask the question.

Thank you again 😊

[Olga]

The radiologist is usually able to pick out 10 or so the bigger ones and designate them as target lesions, and map them. After that they can be watched more closely than the rest.