Relapse after Immunotherapy


(JOE CORTESE) #1

Hi, my 12 year old nephew has battled neuroblastoma for just over 4 years now. After several surgeries, endless chemo/trials, it looks very likely we will lose him for good, any day now. I have read a few stories here about relapses right after immunotherapy. My nephew (Thomas) went to Seattle for Car T Cell therapy in Oct 2017. (we live in Montreal Canada). before he left he was actually doing very well and even after he got back, he looked great.
However, a month later, he was in the hospital for almost 2 weeks from pain in his hip and leg. Doctors said there was significant progression in the bone. Thomas has never been in remission at any point. It was a series of slight tumor shrinkage here, progression there. We never had any kind of news to really celebrate. I was just curious as to how many cases there have been of unexpected relapse shortly after immunotherapy. not looking to lay blame. It just struck me as odd to read a couple of stories about it and how it was similar to our case. Please reach out if you have experienced this or have heard of similar cases. I have been speaking to an Oncologist from Houston who is also interested in knowing. He is preparing to run a trial.


(Pat Corrao) #2

Our granddaughter passed from Neuroblastoma, she relapsed 3 months after immunotherapy and then she did 2 clinical trials but neither one stopped the disease. I wish you all the best! I don’t know if anything would have stopped it but of course I do think about the what if’s.


(JOE CORTESE) #3

Hi, my nephew did not make it either. He passed in March. It was brutal and his deterioration started a month after immunotherapy. I have my doubts and I even expressed them with Seattle childrens only to have them get insulted by my remarks. enough to make them call his hospital in Montreal to complain. Some bedside manner !


(Pat Corrao) #4

I am so very sorry to hear of your nephew’s passing. It’s a terrible disease with a brutal treatment program. You never get over losing a child you just somehow manage to stumble on but never the same. We carry her in our hearts but I would much rather be caring her in my arms.:heart:I wish you strength and someday the comfort of good memories.


(JOE CORTESE) #5

Hi, thank you Pat. It was indeed a brutal 4.5 years of black clouds over our heads and the end was especially difficult. We may not express it but we are broken inside and I truly don’t think will ever be repaired. Death is death but death of a child is bar too high. I am still full of anger.


(Pat Corrao) #6

I still feel rage sometimes and even anger and it’s been almost 4 years, we will never get over losing her. My rage and anger was intense the first 18 months and then subsided a bit. Losing a child is just too much to bear. I am so sorry for your family.:heart: