So today’s MRI indicates that my tumor is stable. I guess this basically means little to no growth. I am really relieved, however, in meeting with my neuro-onco, I have decided to start with radiation therapy as soon as possible. I had been given a choice of a high dose chemo treatment (first week of every month for the next 1 to 2 years), radiation therapy, or wait and watch. I realize there's still a very long road ahead. Of course open biopsy had only removed what tumor tissue that could be removed, but did not provide any sort of treatment to prevent the remaining tumor tissue from future growth. Although today’s MRI showed little to no growth, as we all unfortunately know, it does not necessarily preclude the tumor from growth in the future. Considering this, most likely, the remaining tumor will begin to show signs of growth at some point and treatment is inevitable. So it’s either treatment now, or treatment later so I figure doing now is better and I can just try to move forward with my life.
After meeting with my neuro-onco, I went to over to the radiaton-oncology office to let them know of my decision. I will be hearing from them sometime soon regarding the scheduling of my treatment, which should most likely start in the next week or two. According to the neuro-onco and the radiation-oncology nurse, I should be able to drive myself to and from UCLA which will make it possible for me to receive treatment up there which I am thankful for. I had been concerned whether fatigue may prevent me from driving myself, but it appears that it won’t be an issue and hopefully it won't. They did say that the worse of the fatigue will probably come towards the end.
So at this point, radiation therapy should consist of 28 sessions over a 5 to 6 week period. Each session should last roughly 30 minutes although most of the time should be primarily to set up everything. The actual radiating should only be 2 to 4 minutes in duration. The very first session as I understand it should be a bit longer because of the making of the mask. The radiation therapy will be conducted using the TrueBeam linear accelerator.
This was a somewhat tough decision because there doesn't seem to be a clear advantage between chemo and radiation for low grade tumors for adults. The effectiveness of both in treating tumors seem to be on par. Therefore, it basically came down to what I feel comfortable with and what I can live with after weighing the pros and cons of each and what I want out of life. Again for me, although I know this will be part of my life now, I really just want to try and move on and live my life. I don't want to possibly feel bad for possibly 10 days out of every month for the next 1 to 2 years because of the chemo treatment. Overall, I feel okay about this decision to go with radiation therapy, although there is always the unknown of course. I know the potential of the delayed side effects associated with radiation therapy, but like everything it seems involving brain tumors, they may or may not happen and really it's just up to chance it seems. I might have considered chemo, however my tumor doesn't have the genetic markers to indicate that it would be chemo sensitive. My mythalation score is 0 and I don't have the 1p and 19q deletion. There is still ongoing research regarding genetic markers and how it can be possibly used to determine the treatment and I understand that not having the genetic markers at this point doesn't preclude chemo from being effective, but it just goes to show just how razer close radiation therapy and chemotherapy are I suppose.
Not all the news was good though. In meeting with my neuro-onco, I was able to talk more depth with him about my recent bouts of dizziness and the feeling of off-centeredness. Since my second surgery in August, and up until 2.5 weeks ago, I had actually been dizzy free and had no feeling of off-centeredness unlike how I had been pre-second surgery. Although my dizziness has turned into more of a feeling of off-centeredness the past several days, my neuro-onco is still concerned that I may be having mini-partial seizures. I told him about my visit with my PCP last week who believes these sensations may be due to hypotension (low blood pressure). However, my neuro-onco thinks that it could be both hypotention and the tumor causing these issues and wants to be on the safe side and rule out anything that’s possible to be ruled out. So starting tomorrow, my Keppra dosage will be increased from 1,500 mg up to 2,000 mg to see if it makes a difference.
When I first was prescribed Keppra a couple months before my second surgery, I started out at 500 mg 2x per day. For a the first couple of weeks after my surgery, it was increased to 1,000 mg 2x per day and then decreased back down to 500 mg 2x daily because my dizzy spells were non-present. When I started getting the dizziness again 2.5 weeks ago, my neuro-onco changed my regimen to 500 mg in the morning and 1,000 mg at night.