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@alishawith4

Hi there, my son has relapsed MDB and enrolled in the cartcell trial. Found that the risk/benefit was marginal, all but one has passed away. We terminated shortly after signing , my son's medical management and the roadmap has taken a grimm detour as a result. I have learned so much about this and want to share my experience with all but, in all truth the cartcells are unable to penetrate the solid tumor's antigen and hydrocephalus developed due from the excess csf This incident was a code blue when my son had a seizure from the pressure–the csf was extracted via Ommaya and we learned this was to be a common event. The Ommaya will result in tumor seeding as well. This is a palliative , last resort, and death is expected so it is not reported ( an IRB loophole I call it) The researcher states, "IT WONT BE YOU WHO GETS THE CURE BUT THE NEXT GUY." Sadly some believe they are the next guy.

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Replies to "Hi there, my son has relapsed MDB and enrolled in the cartcell trial. Found that the..."

Hello @alishawith4 – Welcome to Mayo Clinic Connect.

I am so sorry about the difficult situation you are in concerning your son, I can’t even begin to understand what you may be going through. I have had the experience of discussing Palliative Care for myself with my Oncologist however not for my child.
I do not profess to be familiar with MDB, I am sure like many forms of cancer it unfortunately is capable of affecting people differently in many cases.

Mayo Clinic Connect could be a good platform for you to share your story as there are perhaps some members that have found themselves in a similar situation as yours.

You are obviously a very brave person, thank you for taking the first step in sharing your experience.

Bob

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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