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.

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Comment by John on November 22, 2011 at 8:04pm

No worries. I didn't think it was blunt at all. Brain tumors are so individual specific so it really does come down to what each of us feel is right considering everything. Glad to hear that things are holding steady for you 2 years out now.

Comment by Ed on November 22, 2011 at 7:33am

Hi John,

I might have come off as being to blunt and for that I apologize. My Dr. also said the same kind of thing but felt the wait and see was better for me "right" now but things can change. Work being one of the major issues, insurance and things like that. So far, in almost 2 years nothing has changed.

I wish you the best of luck and I hope everything turns out fine, please let us know how everything goes and if you need something just ask. I'm not in Jersey anymore but if you happen to come out to the Chicagoland area let me know.

 

Comment by John on November 21, 2011 at 9:04pm

Hi Edward,

As you probably know, treatment for brain cancers and tumors is a somewhat inexact science right now. A doctor can't tell you that Treatment A will 100% for sure result in X. A doctor can only say, Treatment A might result in X. So for me anyway, it comes down to what I am ready to face, or basically, what I am comfortable with after assessing what I want out of life and the positives and negatives of the options I have before me.

My neuro-oncologist had given me three choices, radiation therapy, chemotherapy, or wait and see. Similar to you, my craniotomy didn't remove my entire tumor. There is still about 20% remaining that in my case will most likely continue to grow without any treatment. So for me, treatment seems inevitable and it's either do it now or do it later. Opting for radiation therapy treatment at this time was the path I am most comfortable with given my circumstance. I rather just do it now (and take the chance that radiation therapy will prolong recurrence for years or possibly eliminate it entirely) and move on with my life.

Let me know if you have any more questions. I also have ups and downs sometimes and pity parties with only me there as well.

Comment by Ed on November 21, 2011 at 10:27am

I had most of an Oligodendroglioma II in the Rt. frontal lobe removed in 2/10, 2000X2  Keppra generic and

100X3 Lamictal. Question, why the treatment if nothing wrong? I know it's personal. My neuro-onco said MRI's with wait and see. I have ups and downs, pity parties with only me there

Comment by John on October 24, 2011 at 12:14pm

Thanks Beth. Yes, the treatment decision was a difficult one to make. It seems that nothing comes easy does it? There's just a lot of uncertainty with brain tumors and it can be frustrating. The lightheadedness has left me wondering what might be the cause. Going to see a cardiologist tomorrow to determine if it might be a cardiovascular issue. So at this point, it may be cardiovascular, the tumor, or the side-effect of the Keppra, who knows. Hoping to get some concrete answers soon. My support system is good at home and I've also contacted a couple people here who have definitely helped so much.

I'll keep things posted here. Should be hearing back regarding my radiation therapy treatment sometime today or tomorrow hopefully.

Comment by Beth Rosenthal on October 18, 2011 at 6:25am
Hi John. I wish you luck with everything. Deciding which course to take  must have been a very difficult decision. I get bouts of dizziness. I'm finding out that this isn't so unusual after brain surgery. Please keep me posted. Do you have a support system at home?

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