A Story That Inspires
I haven’t published a story for a while but I found this by chance on an inspirational site not related to glioblastoma and I was impressed with it and I know how in these holiday times people with lethal life-threatening diseases draw hope from stories of patients who made it despite the statistics and survived. This is the story of a survivor who tells it like this …
“My GBM was diagnosed after a syncopal episode in which I hit my head in the posterior position. I was hospitalized and found that I had a syndrome that required the implantation of a pacemaker. A CT scan showed a lesion right where I hit my head. So I was unable to get an MRI for 6 weeks due to the pacemaker that was implanted in me. I was not worried as I was asymptomatic… until I received the MRI results: GLIOBLASTOMA. I am a doctor, so I knew it was a death sentence with a median survival of 16-18 months. I thought, but I have just retired for 6 months: what an injustice! After an internet search, I chose the Houston Methodist Hospital for the therapies. I was operated on by Dr. David Baskin, complete resection, no neurological deficit. Then it was 6 weeks of radiotherapy and 2 years of TMZ. The administration of TMZ was longer than recommended, but with the neuro-oncologist, Dr. Ivo Tremont, we both decided to continue for as long as possible. We stopped the TMZ cycles only after my hemoglobin started to decline. I have since had MRIs every three months every time with quite a bit of anxiety. Some changes in MRI later revealed side effects and outcomes of radiotherapy. The miraculous news is that Dr. Tremont eventually stated that my GBM was IN REMISSION – a rare term in case of GBM. It has now been SIX YEARS since my surgery in March 2016 !!
All this time I tried to be positive and optimistic about my illness, the support of my wife, my family, my faith, a good diet and regular moderate exercise allowed me to live a normal, active and fulfilling life.
Many have asked me to define some factor that may have contributed to this result, MGMT or IDH status or other biomarkers of my GLIOBLATOMA. Well my GBM was methylated, IDH wild type. I continued to take supplements like mushroom extract, Vitamin C Vitamin D3 and fish oil, all of which could help and didn’t cause any problems. I also believe that the prayers of many people have contributed.“
I hope this article gives everyone who has glioblastoma and the people caring for them the knowledge that there are many survivors out there. To all of you I wish you a Happy Easter, full of hope!
Hi there. I m so happy for you and has the chance to read your story. I have Glioblastomas grade 4. Had an operation, tumor is removed 95%. Now I m on radio and TMZ chemotherapy. Your is giving me a big hope. That is why I will hi appreciate you to share your opinion with the post chemo treatment. Can you, please share with me more detailed information about your experience? You mentioned mushroom extract – which one, please? And what ever is best you can share. Thanks in advance. Rumen
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: jozefkola99@gmail.com
Prayers to you and your family.
Reading this gives all of us hope!