Ellie from England - Dx Sep 2016 at 12 yrs old

[Disco76lover]

Hi Debbie, yes they compare the latest scan to the base scan.
Jussi we were pleased and relieved there are no new mets and very thankful for that.

[D.ap]

Melanie
Also wanted to remind you of Olga’s statement , back in 2017... as you aren’t on a trial and IF there are tumors that aren’t team players ..

It’s always comforting to me to have knowledge of a
plan B, IF need be.

Have a beautiful weekend and savor the good news as well as enjoy every day.

Love
Debbie


“Re: Ellie dx Sep 2016 England age 12
Thu Jun 22, 2017 9:10 pm

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]

Ellie had her three monthly lung ct scan and 12 monthly brain mri scan on Friday. Thankfully her brain is clear and no change on the lungs. The radiologist needs to look at the scans but the oncologist is happy as there are no more mets and she says it is stable disease for now. We are relieved. Ellie is doing really well on cediranib with no side effects really. She’s living a normal, healthy life which is good for a 13 year old.

[D.ap]

Melanie

Such wonderful news to hear ..

Is Ellie still on 20mg of cediranib?
Thank you for sharing

Love
Debbie

[mikko]

GREAT NEWS! So glad to hear this.

[Disco76lover]

Yes she is still taking 20mg daily which is max dose for her age.

[Vega343]

Reading through the story - great news the med has minimal impact on her life and everything remains stable!! Prairie is taking 15mg 5 x week - and struggles with keeping weight on, and energy levels. The diarrhea is manageable. She is a tiny thing though, 60lbs @ 12years old. She has had less than 20% growth in her lung tumors for over 2.5 years on the Cedirinib.
Trying to get back into the forum, and will look for updates!
MJ

[Disco76lover]

Ellie had her regular three monthly ct scan on Tuesday to see if her lung mets are still stable under cediranib. Fortunately, our oncologist advised that her lungs are showing that cediranib is still working for us with barely any change since last August when she had her first lung scan since starting cediranib. The oncologist is very happy with things as are we as we are literally talking mm difference in 12 months. Ellie is continuing with minimal side effects and she will turn 14 next month. This is good as the older she gets, the more options will be available to us for clinical trials. As we know, unfortunately there aren’t as many trials for children which is deeply concerning but I think, once one becomes 14, the trials open up. Hopefully though, the cediranib will continue to hold the growth/spread for a long time.

[arojussi]

I am sorry, what I am going to say is hard to hear again. As asps naturally is very slowly growing and smaller tumors naturally grow slower, because smaller tumors are less dividing cells there are. So if there is any suspicious growth even if growth is just mm in year that means that sooner or later you need to figure out new plan. I try to think ahead as far as possible, because when acute situation is there I cant think straight. Fortunately most likely you dont need to look into clinical trials yet. If all cancer is removable with surgeries it can dramatically increase lifespan of sarcoma patients. This is specially true for slowly growing asps. So if any surgeon can operate lungs using laser tools, that would be my next move. Of course new tumors can appear, but thanks to ablations and stereotactic radiosurgeries they can be destroyed. Proplem with immunotherapies is that these drugs are very expensive and still experimental, so once you try them it is very difficult to have them again. At the moment nobody knows what is optimal compination for immunotherapy. As you know I believe in using radiation to one met to create abscopal effect in compination with pd1-inhibitor.

[Disco76lover]

Thanks Jussi for your advice. We spoke to a surgeon who is excellent in his field and he wouldn’t operate due to size and number. We also looked into ablation but we decided against it as the size of the Mets are very tiny and there was / is a high probability that the surgeon wouldn’t get them all, putting her through the operation twice for both lungs, ending up with lots of healthy lung tissue being removed only to find more mets at the next scan. Ablation / operation would never be ruled out but we are very fortunate to have an excellent oncologist who is part of a very good team that work and keep in touch with teams from all over the world in clinical trials etc. I really appreciate your advice Jussi and I have found it to be very valuable. For now, we are happy with the results and I should have maybe said that only some have grown and very minimally along with some reduction. That said, we know it won’t hold it forever and at that point will look again at all the options.

[Olga]

All in all it is a good result for now. She still have a chance to be able to wait on cediranib till the Keytruda approval, so may be no clinical trial would be needed. I understood the growth is small, but what is the absolute size of the bigger lung mets?

[D.ap]

Nothing to add Melanie other than wonderful news to hear.
: )

[Disco76lover]

Thank you all. Olga, the largest met is just under 1cm with the rest being smaller.

[Olga]

The optimal size for the cryoablation is 10-15 mm, just keep it in mind.

[Disco76lover]

Thanks Olga. We will definitely keep that in mind.