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Hi @alishawith4, I'd like to add my welcome. I'm sorry to hear that your son has medulloblastoma (MDB).

"In 2017, two CAR T-cell therapies were approved by the Food and Drug Administration (FDA), one for the treatment of children with acute lymphoblastic leukemia (ALL) and the other for adults with advanced lymphomas. Nevertheless, researchers caution that, in many respects, it’s still early days for CAR T cells, including questions about whether they will ever be effective against solid tumors like breast and colorectal cancer." https://www.cancer.gov/about-cancer/treatment/research/car-t-cells

Researcher are studying the potential of CAR-T therapy for pediatric brain tumors
– CAR T Cell Therapy for Pediatric Brain Tumors https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7435009/

Alisha, I write this information in part to share with other members reading this discussion. Clearly, the above information is not new to you.

You're right that clinical trials for new and novel therapies can give false hope, despite the careful consultation of researchers and signing of consent forms. It is altruistic and laudable when patients with late stage disease agree to take part in a clinical trial that will knowingly not prolong life and potentially can cause harm so that future patients may benefit.

I completely understand your decision to withdraw your son from the trial. You said that your son's medical management has taken "a grimm detour." I'm so sorry to hear this. What treatment is he getting? Are you also in the care of a palliative care team?

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Replies to "Hi @alishawith4, I'd like to add my welcome. I'm sorry to hear that your son has..."

Hello and may i please mention that my son was not in any late stages of cancer. We were presented with a very grimm bedside mannerism by the primary oncologist and lead to the trial. The marketing and the verbal mentions of " We'll see you in seven years and you'll be ….." – " remarks on social media "cartcells are less toxic, harmful to organs than conventional chemo, etc" THIS IS ABSOLUTELY MISLEADING" The context of adverse reactions are not linked to the proper adversities (as in the headache and hydrocephalus) and therefore it is untrue." The idea of "You may change your mind right up until the needle is above your head" is ludicrous, more on that later. Also, " Hey buddy you may hop from trial to trial if you dont like it". This is huge!!! ONE DOES NOT REALIZE THE CARTCELLS HAVE ALREADY INSULTED the body to the point of no return. This means ineligible for any others and frankly with these lingering monsters who would be eligible, as the results would be inconclusive. These engineered t cells change our entire immune response permanently, in fact, they remain indefinitley -for the good of nothing IN SOLID TUMORS. I will present my story piece by piece if i am able to. I speak the truth and can back it up anytime. Thank you for this warm welcome. I am making the most effort to not personally criticize . Thank you again. Let me add this as I am always intending to do so. Leukemia is doing very well with this cartcell immunotherapy but one should start from scratch and not piggy back off another when using the treatment for an entirely different system. Also we are not speaking of any experiences from the Mayo Clinic.