Ellie from England - Dx Sep 2016 at 12 yrs old

[Disco76lover]

Where would I find the latest cediranib trial results? I’m sure one has just been released. Thanks

[D.ap]

Melanie
Has Ellie had a genome/genetic type analysis performed ?
Here’s a study on ced and possible gene mapping Med success routes, specific to genetics .


http://www.cureasps.org/forum/viewtopic.php?f=45&t=1557

https://www.ncbi.nlm.nih.gov/pmc/articl ... po=1.00000

[D.ap]

National Cancer Institute, National Institutes of Health, Bethesda, MD 20892, USA. kummars@mail.nih.gov

Maybe contact Dr Kummar :)
She’s in charge of the Bestheda Maryland study here in the USA.
Pertaining to Ced and ASPS
Bonni should have a suggestion and or reference too.

:)

[Olga]

There was a result from the kids trial on ASCO this year:
Cediranib phase II study in children with metastatic alveolar soft part sarcoma (ASPS).
http://abstracts.asco.org/214/AbstView_214_216489.html

[Disco76lover]

Thank you Debbie and Olga for the information. It seems to be more beneficial in adults than children but I suppose the larger cohort of adults will make a difference.

[Disco76lover]

Ellie had her 3 month ct scan yesterday to see how her lung mets are doing on cediranib. The last two scans showed no growth whatsoever and the one yesterday showed a reduction in a couple of mets. We are overjoyed and hope they continue to reduce or disappear. Ellie will have been on cediranib 2 years in May. Scanxiety never gets any easier but we are very thankful and relieved today xx

[Olga]

I am so happy to hear that and it is a very interesting report overall - that the stability might be long before the response (reduction) is detected. Brittany Hess even had a heterogeneity in response with one met enlarging - they had to resect it - and then the rest slowly disappeared. So the lesson is - if there is a stability, it makes sense to wait and see may be the response will follow

[Disco76lover]

Yes I agree Olga. We definitely hope for more reduction that’s for sure.

[arojussi]

Great news. Cediranib is not immunotherapy drug, but there is no resson why cancer cell death from cediranib couldnt activate immunesystem against cancer.

[Disco76lover]

Thanks Jussi. We certainly hope cediranib will do that and continue to kill the lung mets. Hope you are doing and feeling better with your treatment Xx

[Disco76lover]

A quick update as it’s been 12 months since I last wrote. Ellie has been stable on cediranib for a while with the last scan in February showing reduction in two tumours that we know about. The oncologist advised she has 95% healthy lung and the mets she does have are small. None are over 1cm and she is fit and well living a normal life for a 15 year old. Slight reductions have been shown in a couple of the recent scans.
However, on Wednesday she suffered a pneumothorax. The respiratory consultant advised the many he sees, especially in Ellie’s age group, are all tall and slim people. She fits the bill perfectly for this and is unfortunate! She is recovering well with a chest drain. There is no way of knowing whether it is related or not unless they do a thoracotomy. They will only do this if it doesn’t heal on its own. So far, it’s looking positive but we will see. She has 100% lung function and heart etc are performing perfectly well. She is off cediranib while the lung heals and then she will be put back on it as it’s doing what we need it to do.
I should add that there is no evidence to suggest cediranib causes this and although it can’t be ruled out, the thoracic / respiratory consultant and the oncologist don’t think it is linked. Ellie has been on the drug for 3 years in May with continued stability and reduction seen so far.

[D.ap]

Melanie ,

Thank you for the update .
It’s truly wonderful to hear of Ellie’s stability.😊
Sure hoping to hear of Ellie’s pneumothorax resolving and Ellie feeling better ,soon.
Love,

[D.ap]

Hello again Melanie
I was doing a search on the forum and found an article on votrient having caused a pneumothorax during its phase 3 trial , back in 2015.

viewtopic.php?p=8090#p8090

It looks like the pneumothorax accrued at the beginning/initial dose tho , in this trial and Ellie’s been on cediranib for 3 years .

In addition I linked on that post to an article on pneumothorax . Within that link it pointed out that a spontaneous pneumothorax can also be linked to the end of a females menses and or fibroids in the uterus ? The term is :
“Catamenial:
This is when a pneumothorax occurs 1 to 3 days after a woman's monthly period begins. A catamenial spontaneous pneumothorax is more common in women with endometriosis.”
https://www.drugs.com/cg/spontaneous-pneumothorax.html

[Disco76lover]

Thanks Debbie. The consultant has been tonight and I think they are going to do a thoracotomy as the air is still leaking. They will find out the reason behind it once they operate. I would like to think it has nothing to do with her lung mets, but we will see. Xx

[D.ap]

Melanie
Gods speed
My TKI knowledge is VERY limited other than healing is limited as a rule ? Chest tube possibly .

Love to all
However ,
I’m sure Olga and Bonni will respond when able .


Love,