Jan 28, 2013 - 12:22 pm
I have been on and off this site.
My husband was diagnosed with GBM in March 2012. We have had our fair amount of ups and downs, MRIs showing improvement and then spread. We live in Massachusetts and I brought my husband to Brigham and Women's, as well as Dana Farber - having seen one of the most knowledgeable doctors in the Boston area, who is from Duke University. There has been some forgetfulness, etc. There has been some increasing forgetfulness, but it's funny how the brain is able to find new paths. We lost my father-in-law unexpectedly 2 days after Christmas. We had been on Temodar as most GBM patients start with. Initially, it was helping and there was shrinkage. My husband has 3 tumors, all inoperable. Our last trip to Dana Farber, he was hospitalized at BWH and had an MRI around 9/25/2012, which showed spread to the brain stem, left side of brain (original tumors on right), "fingers", and some suspicious cells in his CSF - this was a shock to us because he had been doing so well. We then had another MRI on 10/30/2012, this showed no cancer at brain stem, the new left tumors had shrunk and so had the original 3 tumors - Yahoo.
My husband had his follow up MRI on 12/31/2012. Dana Farber has switched him to CEENU because back on the September MRI, it showed that the Temodar had stopped working. This new MRI (12/31) shows wide growth, the right and left tumors were larger, there is cancer on the brain stem, pons, medulla. This was the day before my FILs wake. Again, another shock. These are the ups and downs experienced by most GBM patients. I'm writing today because our local oncologist and physician at Dana Farber are suggested trying 1 more course of CEENU and doing another MRI in 3 weeks to see if this therapeutic agent is working. I've have noticed that since his last course of CEENU, last Wednesday, as well as the full week prior, he has been complaining of "sinus" headaches (which he used to get when he was healthy)." As of this new course, he has pretty much stayed in bed and has been sleeping a tremendous amount. If I ask him a question, it takes him a while to respond. I'm getting very concerned and wanted to check with those of you, who have experienced this terrible disease and this journey and did you also experience this. I have voiced my concerns to friends and our oncologist and they said it could be a number of things. I guess I'll probably just have to wait for the MRI. I came on hoping that some of you could share with me your experience and what worked/didn't work for you or your spouse or child? I find myself crying daily and do pray to find the strenght to make it through this dreaded disease. Thank goodness I have God. Thanks in advance for any information you may have. Have a blessed day!