Mayo Clinic Connect
My brother is facing a recurrent anaplastic ependymoma even after irradiation. I am looking for views on benefits of CAR-T cell therapy, dendritic or any other non conventional therapy which if you have experienced. Thanks
Hi @pravin1, welcome to Connect. You'll notice that I moved your message to the Brain Tumor group I did this so you can connect with other members, like @jcorcoran @annemaree @annrmarie and @beckyziegler, who know first-hand about ependymoma. You can read more about each of them in this discussion:
– Ependymoma/subependymoma of the 4th ventricle https://connect.mayoclinic.org/discussion/ependymomasubependymoma-of-the-4th-ventricle/
Pravin, from what I understand, CAR T-cell therapy is currently FDA approved as standard of care for some forms of aggressive, refractory non-Hodgkin lymphoma and for patients with relapsed or refractory acute lymphoblastic leukemia up to age 25. While there are many ongoing trials of CAR T-cell therapy for other forms of blood cancer, I'm not aware of its use for brain tumors. What have you heard?
Here are current clinical trials for childhood ependymoma for https://www.cancer.gov/about-cancer/treatment/clinical-trials/disease/child-ependymoma/treatment
And this one for adults:
– Carboplatin and Bevacizumab for Recurrent Ependymoma https://clinicaltrials.gov/ct2/show/NCT01295944
Is your brother a child or adult?
Hi, @pravin1 – wanted to check in with you to see how your brother has been doing?
I had an ependymoma tumor growing inside my spinal cord near my brain stem..I was 56 years old at the time and Vanderbilt Hospital gave me about 6 weeks to live. Thank you Mayo, Dr. William Kraus for saving my life. Though I am tetraplegic, I am now 66 and strong. Please tell me if I can help anyone with this unique condition.
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I'd like to add my welcome to Mayo Clinic Connect, @rikrider. That is quite a story of going from news that you had 6 weeks to live to having life-saving surgery. My father-in-law has another type of tumor, neuroendocrine, but 2 years ago he had a similar situation where he was basically told he had about a year left to live, as tumors had filled a lobe of his liver and treatments were not working well on his disease. Finally, somehow he qualified for surgery and a surgeon at Mayo Clinic who takes on very complex cases basically saved his life.
I'd like to introduce you to some others who have mentioned ependymoma tumor who may be interested in hearing more about your story or asking you some questions, like @beckyziegler @jcorcoran @spacemoth @annrmarie.
You mentioned you are currently tetraplegic, rikrider. Do you have sensory and motor loss, or just one of those?
Initially, I was paralyzed and in a motorized wheelchair. I was going through intense physical therapy for the 52 days I was there.
I stayed in physical therapy for about two years but continued on my own. I moved to a regular wheelchair as I gained movement in my arms and legs. My primary issue has been pain, but had to push on. I then graduated to a walker, then a cane. I stayed determined and kept pushing. Unfortunately, it was more than my spouse could bear and I divorced after 30 years of marriage. It was then that I adjusted my thinking, and it was the most important thing. I increased my own therapy and got serious about my health. I discovered ketogenic eating and it changed my life. I took off 40 pounds and walked and used stretch bands to develop muscle tone. I married a wonderful lady and stay on course.
Now, as far as motor skills-I have numbness in my limbs and my right hand always has burning sensations but they move and work. it was 10 years on October 29, (my reborn date), and I continue to work and learn. So far, no recurrence of the tumor. I cannot say that I have gotten used to the pain but I manage it through meditation and care of my body. Motor skills? I may stumble some but I blame it on my lack of feeling in my legs and feet and concentration overcomes.
I hope this helps a bit.
I have been following the stem cell treatment for spinal cord injuries and wonder if it might be helpful with a condition like mine.
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