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Old 01-29-2009, 11:07 AM   #1
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After Whole Brain Radiation -now what?

I have finished my 20 rounds of WBR and two "boosts" to the surgical site on Jan.16th and now I am recovering from the side effects of feeling nausea, fatigue and scalp irritation along with some intermittent ringing in the ears. My problem now becomes this- my radiation oncologist that I was contracted to see has told me I should have an MRI about two months from now to see where I am at but he referred me back to my regular oncologist at Kaiser to follow-up with that. I went to see my Kaiser Oncologist on Jan. 21st and he feels that I should not have a followup MRI. He believes that the WBR has killed any seeds since I had surgery on Nov.10 to remove the single 3 cm brain met. He is good about following up with my Ct scans for my primary cancer site and bone scans but has a different idea about this.
My feeling is that I don't want to become constantly gammaknifing every spot but yet I don't want to wait til I have a huge symptom which will be a tumor too big to deal with and that's the end of the road for me. Its not nice to say but the little research I have found online points to patients dying from the primary cancer coming back or the complications rather than the brain mets persay . And if I push for an MRI followup I don't know as a layman how often one should have it done. I also am surrounded by a big bottles of coenzyme Q10 and antioxident supplements and don't know if taking them now would be a bad thing or a good thing. I know I was told not to take it while doing the radiation since it was counterproductive to the radiation. I am tired of constantly dealing with health issues(I'm sure you all have that feeling)and if I live a long time I don't want to spend every day worrying if the next will be my last. How can I wrap my mind around a "living" mindset and go about living rather than worrying about this every day? Thanks for listening-Kathy in CA
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