Persistant disease


(bisera van cott) #1

Has anyone being treated for relapse with oral chemo called Mekenist (Trametinib)?
My niece supposedly relapsed 6 weeks after the frontline therapy, and we asked for some treatment that will give her quality of life and they put her on mekinist. She had 2 spots on MIBG scan at that time 11/2018. We just had a new scan because her right eye turned bruised and her curie score is 17 and the lesions are so big that one on the skull is pressing on her brain membrane.
We are being treated in Cincinnati Children’s. We had a second opinion from Memorial Sloan yesterday and they said at this point disease progressed so bad that her chances are zero. They also said that this is persistant disease not the relapse.
I am so upset at her oncologist and the way he handled this. I believe that we were not informed enough and that something could have done before this happened.
I know it is not good to think what if but I am loosing a child because of it.
Has anyone else have similar story?


(Pat Corrao) #2

I am so very sorry to hear about your niece. Our granddaughter passed from neuroblastoma after a 28 month battle, she too went through all frontline treatment and relapsed 3 months later, as it turned out the oncologist had missed a spot on her 6 week scans and it was not discovered for another 6 weeks on another scan. She then went into a clinical trial and then more chemo and finally 2 MIBG treatments which gave her an additional 6 months here on earth before she passed. I pray your family has a different outcome and that you find a treatment that can help. From my heart to yours.