After consulting with my plethora of doctors, here is the plan we came up with. Dr. Liau is concerned that the chemo may not be working for my tumor, as it’s grown slightly since I started chemo in February, albeit slight. She first recommended that I proceed with radiation, but after a phone conference with her she agreed with my appeal to give chemo a couple more months to kick in, scan again and then go from there. I’m still hesitant to play the radiation card for a couple of reasons. First, it’s still only a low grade tumor. I can only do radiation once, so if it happens to upgrade down the road, I don’t have this option. Radiation is generally not used for low grade tumors because of this reason. Second, she said that radiation will not shrink this tumor, it should just keep it from transforming to a higher grade tumor and hopefully keep it from growing more. My thought was that I’ve had this thing for 5 years now and it’s mostly remained low grade so that wasn’t too concerning for me, even though it’s always a risk. If radiation would actually shrink this thing and get it out of my brain, then I might be more willing to jump on that bandwagon. I asked her what the deficits would be radiating the area that needs to be radiated. She said that I will possibly have more visual deficits than what I already have, as well as memory issues and hair loss at the insertion site. Not too bad, but still not my choice at this time. I’m so thankful that she’s open to just giving me her advice, but still willing to let me make the decision and supporting me in what I decide. I can’t imagine going through this whole mess without her!
On the alternative front, we’re going to keep on keeping on. We’ve been keeping DMSO out of the mix for the most part since last November, so we’ve thrown that back in at quite a high level. It stinks, literally, but it seems to have been effective during last summer and fall, so we’re going to see what we can do with it back in the schedule. I am alternating the DMSO and high dose Vitamin C on the days that I’m not on chemo to throw something at this tumor every single day. Since I’ve been told by my surgeon that there is nothing out there right now that can shrink this tumor, I’m going to try anything I can to make that happen. For those of you wondering, she is aware of what I’m doing and supportive, as is my oncologist. I’ve been blessed with several doctors in my life that will let me make a lot of my own treatment decisions with their guidance, but support me in whatever I decide. LOVE that.
Thanks for all of your emails, phone calls, cards etc….it’s great to feel loved and supported. Next scan is June 30th….you’ll be seeing me before then (-;