Oct 19, 2017 Latest post:
Apr 18, 2018
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I am a 48 year old, mother of three wonderful kids, A 15year old Boy, Benjamin, and two girls, 12year old Jena and 9 yr old Katie.
I had an Astocytoma in the right Parietal portion of my brain. But as of Feb.2017, it has been upgraded to a Glioblastoma. I was diagnosed Dec. of 1996 and had a tumor resection February 6, 1997. It was the size of a tennis ball I was told! Then, in January, 2006, one month after I gave birth to Jena, I had another grand mal seizure and found out that it had grown back In the same cavity and was bigger in size. It was missed by our local Neurologists! So February of 2006 I had another surgery to remove that. We decided against radiation, til it was absolutely necessary. It became necessary, as it started growing again, during the summer of 2007. I had my 3rd surgery on Monday October 15th, 2007.I had radiation treatments starting 12-13-07 til January 24th 2008. Then, On my scan August 29th, 2013 Wake Forest found some growth starting again. October 25,2013 I went back in for my 4th tumor resection at Johns Hopkins in Baltimore. It is now an Astrocytoma, grade 3. We decided to Start going to UVA for treatment & MRIs.
On Wednesday January 8th 2014 I started a Temodar regimen of 5 days of Chemotherapy pills and 23 days off. I took it for a year and a half. August 2016 it has started growing back. So I did 2 months of Chemo, and in my October MRI, it had actually grown a little bit. The discussion was to do the stereotactic radio surgery, (The Gamma Knife) I made the appointment, but in the meantime, my neurosurgeon from Johns Hopkins called me after seeing the MRI and the decision my neurologist made to use radiation. He was concerned that it was too much of a response for such a little lesion, especially because I'm not having neurological effect. I took the daily Chemo up until my Dec. 20th. MRI. The results of the MRI showed that it had grown bigger, plus there is an additional area of change. My neurosurgeon, Dr Weingart at JHU, suggests surgery as my best option. I had my 5th brain tumor resection February 3, 2017.
Chemo and radiation have been completed, and I am now undergoing immunotherapy.
I have not seen much response to immunetherapy, at least we dont think there is. But because of the extreme neurological loss to my function on my left side my Dr had to keep me on the steroids. Which is contraindicated with steroids We are just now tapering steroids slightly, hoping again to, Maybe do another round of immunetherapy. Right now I am getting an infusion of Irinotecan Chemo along with Avastin every two weeks An anti tumor drug.