The Story of Carolyn
It was September 2012 when I had a first seizure. During my lunch break at work I was talking to my colleague when I started feeling weird. It was as if my eyes crossed. Then I woke up lying on the floor with a doctor asking me questions. My colleague was looking at me in fear. I was 35, a mother of two girls and in good health.
I spent several days in the nearby hospital. An MRI and biopsy revealed that there was a grade 4 glioblastoma in my left parietal lobe. Together with family and friends we did some research and in the end we decided to go to the Johns Hopkins Medical Center, close to the John Hopkins University which for several months has been providing data on the pandemic to the whole world. They were amazed that I had not been operated on urgently because they said, a tumor of that size should be removed immediately, regardless of its grade.
I was operated on with the aim of removing most of the tumor and the surgeon inserted a Gliadel Wafer into the tumor cavity. After the surgery, I completed standard treatment with radiotherapy for four weeks and Temozolomide. After radiotherapy, I continued on Temozolomide and continued MRI monitoring every two months. Seven months after my diagnosis, I had recovered well enough to be able to take long walks. However, during the summer, Temozolomide made me feel weaker and the resonance indicates that there was a recurrence in the same tumor site. At the time of initial diagnosis, tests had been performed which indicated that my tumor’s genetic profile was such that it did not respond well to Temozolomide, but I did not expect a recurrence in such a short time.
In the fall of 2013, my family and I began looking for clinical trials available on clinicaltrials.gov. After a couple of failed attempts, I was admitted to the UCLA clinical trial involving the use of immunotherapy with modified T cells.
My husband and I flew to Los Angeles and had a second surgery. My surgery involved removing the tumor and inserting a port through which to deliver the therapy directly to the tumor site. Some cells were selected from my glioblastoma and were used to train my T cells and others provided by donors to recognize and attack my glioblastoma. The trained T cells had to be injected through the gate that was implanted during the surgery. The plan was to carry out T-cell insertions during bimonthly treatments. Each treatment involves two T-cell insertions one week apart.
I then returned home to await the first treatment in January 2014. After the surgery, I had lost sight in my right eye. I had a modest fever, but still I was ready to fight. After the first injection of lymphocytes, the fever became very high. I had meningitis caused by the rejection of the door that was implanted in my brain. I underwent another surgery to remove the door. During the surgery, doctors decided to place the modified T cells directly on the tumor site. I was hospitalized in intensive care and underwent antibiotic treatment and fortunately after several weeks I recovered from meningitis. However, they informed me that I could not continue the clinical trial. But, my MRI showed no signs of the tumor. They then suggested me to go home and wait. I have waited 6 years and to date my MRIs are clean. I still have some epileptic seizures which, however, are controlled with drugs, I have not recovered the sight in my right eye, I had to quit my job as a mechanical engineer but I’m here and I feel lucky. I am a stay-at-home mom and enjoy life with my family, friends and daughters.
Is there any other data about Carolyn in the meantime…?
I’m Sara and my father was diagnosed in May 2010 with GBM IV.
the last update I have about Carolyn is dated May 2020. If your father was diagnosed in May 2010 he is a long term survivor and I’ll be more than happy to host his story on this website. In case you like please contact me. We need to give hope to GBM patients!
hi dear sara
my wife 53 y old just operate on 15th feb. 2021 and we will starrt rt on 08 02 2021.
i just start search for GBM
also the dr said apprx 14 month life.
how / what dıd you do for long life for your father.
sinan küçük /
Hi. Hope this comment finds you well and hope everyone is having a good time with they’re beloved ones. I am writing this as a request for a contact with you because i have my dad with GBM and with e recurrence. In hope you will contact me by email just for talk.
My email: firstname.lastname@example.org