Ellie from England - Dx Sep 2016 at 12 yrs old

[Disco76lover]

Thanks Debbie. Sorry I meant son not daughter in my previous post! Xx

[Bonni Hess]

Dear Melanie, We are sitting in the waiting room at Cross Cancer Institute in Edmonton, Alberta while Brittany is having her 4 month Cediranib Clinical Trial chest/abdominal/pelvic scans, and then we will meet with her Clinical Trial oncologist to receive, discuss, and review the scan results tomorrow. As always, we have great scanxiety but are holding VERY tight to Hope for GOOD NEWS of continued disease stability and no new tumors. I have very limited computer/internet access here in Canada, but will write more in tesponse to your post and questions after we return to the USA on Saturday. In the meantime, please take care, stay strong, and let Hope lead you through each day on this challenging journey which all of us on this web site share. With special caring thoughts, healing wishes, and continued Hope, Bonni

[arojussi]

Thanks for update. As long as Ellie is on Cediranib trial I think surgery is not an opinion but after trial you should be able to wait until tumors grow big enough for cryoablation and or laser surgery. Also if there is new mets you can treat them with similar manner as long as you have regular scans for all vital organs. As long as Cediranib works nothing grows and there is no need or possibility to do anything. Unfortunately Cediranib is very unlikely to work forever. Some cancer cells are more resistant to treatments than other. These resistant cells often survive systemic treatments, so they must be treated locally. After asps beomes resistant to tki it can grow quicker. I reallly cant say anything about prognosis at this point. Sorry I didnt notice that Ellie is having Cediranib outside clinical trial, so she can have ablation and or surgery if one or two tumors dont respond to Cediranib. This is great news.

[Olga]

Actually we do not know if Ellie is having Cediranib outside of the clinical trial - I asked and got no answer.

[Disco76lover]

Sorry Olga I must have missed that. Ellie isn't on a clinical trial. The oncologist has worked tirelessly to obtain it on compassionate grounds. The clinical trial finished and a paper has been presented (June). Sorry for not replying to your question earlier.

[Disco76lover]

Thank you so much Jussi and Bonni for your responses and I pray Brittany and yourself Jussi are well and the scan results are good. I hope too that cediranib will keep the mets at bay for a very long time. I also hope with them bring very small (3mm is the largest) that the drug may kill them off. But I know this is very unlikely!! I'm following up a surgical option for if and when it doesn't work. I'm not even sure if laser therapy would work on mets this tiny but hope to have answers soon from Dr Drewes and Mr Ladas the Thoracic Surgeons.

[Disco76lover]

Sorry I should add Olga that Ellie is having a 20mg dose daily which she is fine with. The recommended dose is 17mg. So far there has been no need to reduce dosage. Ellie is currently on week 6 of treatment. Her bloods, blood pressure, weight and urine are good.

[Olga]

Thank you for clarification. the significance of the on trial or not is the rules that limit what the patients can do if they are on phase 2 or 2 clinical trial. As Jussi said sometimes there are few mets that develop mutation and do not respond anymore, if on a trial they kick that patient out. If on the off label it is between you and the oncologist and knowing that some mets can be treated locally/resected and the drug continued if works for the rest.

[Disco76lover]

Thank you Olga x

[Bonni Hess]

Dear Melanie,
I responded to your questions regarding Brittany's Cediranib experience on Brittany's Cediranib topic. I Hope that the information is helpful to you. Please know that I am here to help with any shared information that I may have, and that you and dear Ellie are being held very close in my heart and my most caring thoughts.
With special hugs, healing wishes, and continued Hope,
Bonni

[Disco76lover]

Thank
You Bonni.

[D.ap]

Melanie and family
Prayers are with you with scans approaching

Love the Pearson family

[Disco76lover]

Thank you! I'm also currently waiting on Dr Drewes from Germany to respond as I sent him all Ellie's ct scans up to now. We hope surgery is an option to remove if cediranib doesn't work. I'll keep you all posted as news comes in from scans and Germany x

[Disco76lover]

Ok so here's an update on Ellie's latest scan which is the first once since starting cediranib 3 months ago. The ct lung scan showed no new lung mets and no growth on current mets. This was great news as all ct scans have shown growth up until this point. Ellie is continuing to do well in herself. Dr Drewes from Germany got in touch to say he can and would perform surgery to remove lung mets if they don't increase in number. This will be our option once cediranib stops working.

[Disco76lover]

I should add that all scans have been sent to Dr Drewes as well as the Royal Brompton. They were discussed in a monthly sarcoma meeting. RB said they wouldn't operate as there are too many (35 in one lung and 25 in the other). However if cediranib reduces the number then it might be an option. The largest met being 10mm. Germany said they would operate but Dr Drewes is aware ellie will be staying on cediranib until it stops working. We will continue to liaise with Germany in the meantime to Update them every three months as to Ellie's scan results and our oncologist will continue to liaise with the Royal Brompton also.