Feb 22, 2012 - 4:57 pm
I am starting a new thread to hear the experiences of you who went through a radiation treatment second time. I wanted to learn as much as possible before I make the decision for my husband. Jacob has a recurrent Oligodendroglioma grade 3 on the left frontal lobe. He had the dx in 1997 with oligo 1 and went through radiation in 1998 and temodar chemo (no surgery, because all 4 oncologists we consulted said no to surgery because of the tumor location). He has been leading a normal life followed with MRI every 6 months with two biopsies and temodar chemo now and then. In 2008, the tumor level changed to Oligo 3 and he has been continuously on temodar followed by CCNU for about five months. In December 2011 he went through a surgery to remove blood/fluid that was accumulated in the brain. Then, in January this year he got his first infusion of Avastin and which resulted in an acute bleeding in the brain. Now, Jacob is very weak cognitively .We met with our NO last week and he was saying that a second radiation is the only hope for Jacob ( not gamma knife or high dose at one time , he says recent studies showed promising outcome if give low doses over a week time as second round of radiation).
Our NO called me over the phone today and said that the tumor is very stable in the MRI they took yesterday compared to the one they took on Jan 23rd. He said he's scheduling radiation treatment for Jacob in 2 weeks Please share your thoughts/opinion/suggestions freely; good and bad. Don't feel shy to say the facts and I promise I will look at it very objectively. I just want to make sure I did my best for my husband (he has been making the decisions until about 6 moths ago so it was not this hard for me. Now he can't and I have to do it for him which I find it very hard emotionally. Thank you in advance for all your support.
Thinking and Praying for all who is fighting this disease with me and Jacob.
I am listing excerpts from our phone conversation today to get an idea of my current situation :-)
Me: Dr, I am not comfortable with a second time radiation after hearing the experiences of my tumor friends. Because Jacob's cognitive ability is affected very negatively after this bleed, I am very concerned. Aren't we taking a big risk with side effects?