Hello everyone my name is Patrick. After having no symptoms, I had an absent seizure then fell 2 times in July. I went to the ER after and the CT showed a mass. I was then taken by ambulance to a hospital with a level 4 Neuro ICU unit.
On July 12th, I had a craniotomy and my neurosurgeon surgeon was able to do a gross total resection of the tumor. This was confirmed by 2 post surgical MRI's at the hospital.
The hospital setup ostensibly release visits with a radiation oncologist as well as a medical oncologist. At my first visit. with the radiation oncologist, he shared that the pathology showed the tumor was a Right Parietal lobe glioblastoma. The radiation oncologist then put together a plan for 30 targeted radiation treatments in coordination with temozolomide as the additional tumor testing showed the characteristics of my tumor were very responsive to the treatments.
My first radiation and chemo treatment was August 20th and I have been very fortunate there have been no negative side effects.
After treatment was complete, I had an MRI Oct 26 which showed everything was still clear. My medical oncologist then cleared me for adjuvant chemotherapy only. since November, I have been taking 350mg of temozolomide 5 consecutive days each month.
I just had a CT scan 5 days ago which came back normal. My next MRI is January 22. Needless to say im nervous and scared. This disease is horrible. but im so grateful to have a support group to come to.
Hi Patrick
a warm welcome to the online community. Thanks for sharing your story. Sorry that its a tale that you have to tell but it sounds as though things are stable so that's a win.
I supported my late husband through the three years of his GBM journey so I can empathise with your nervousness and fears. (You can read the gist of our story in my bio)
Don't really have much to add to what Chris has already said but just wanted to reach out. This is a safe and supportive group so please reach out anytime. There's always someone around to listen who gets it, someone to hold your hand and to offer a virtual hug when its needed. You're not alone. We've got you.
It’s always good to talk so please remember that you can also call the Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available. This service provides lots of cancer information, emotional support, benefit and financial guidance or just a listening ear.
For now though I'm sending you a huge virtual hug and lots of positive energy
love n hugs
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
