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.

(bisera van cott) #3

Hi Pat,

Thank you so much for sharing your story.
It is very interesting because our oncologist on her first scan, 6 weeks after the last therapy , saw 2 spots on skull and shoulder and decided to wait 6 weeks. Then those 2 spots were bigger and he decided to put her on this oral chemo which started 12/24/18. He said next scan should be 3 months from then and it was scheduled for 3/27. She got bruise around her eye 2 weeks ago and he ordered mibg scan and the results were that disease progressed so bad that lesion on her skull is now pushing on her brain . I am so upset. How did you deal with anger that oncologist missed the disease? I cant shake it off…

(Pat Corrao) #4

I don’t think even now the anger is gone and it’s been 4 years since she has passed, it has diminished some and I am not full of anger all the time. I am still angry it happened to our family, not that I wish it on any family but it shouldn’t happen to any child. I think over time I came to realize that even if it hadn’t been missed 6 weeks out it would not have made a difference in the outcome because she had the most amplified gene code. We miss her everyday and I believe we will be with her again one day and she will be free of cancer. Your still in the fight and don’t give up hope. Don’t let your anger take away your time with her today.