Stage 4 lung cancer with brain mets and radiation questions

Starting radiation on Monday and in a study to avoid the hippocampus area for short term memory. My concern is that even though no cancer is show in that region now that there may be microscopic legions already there and by avoiding this area may indeed hurt me in the future. Trying to figure out if I should stay in the study. Currently I have no symptoms and jus started Tarceva for the EGFR mutation. Anyone out there who has ben through this? Please respond if so. Thank you,

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  • I had whole brain radiation because 13 small tumors were found. The radiation itself wasn't bad. However 2 weeks after, my appetite disappeared and I lost 30 pounds and my hair. I needed to lose that weight anyway, so I wasn't too alarmed. There are some stylish wigs and hats from the American Cancer Society that protected my head during the summer. I took memantine for 6 months to help maintain brain memory. It's a common drug used for Alzheimer's patients. I had Tarceva initially for 7 months (before progression) as I have the EGFR exon 19 mutation.

    Get a second opinion. Even if you have to pay, it will be worth it.

    Best to you,

    -Joan

  • Thank you for your reply. I too will be on memantine and am currently just started on Tarceva for the mutation. How long have you been diagnosed?

  • After radiation is finished you will be followed very close with regular MRIs. Theoretically, they can then follow those with Gammaknife radiation on any spots that come up. I say theoretically because I have no personal experience with this just years of following the research against the day I need WBR.

  • I have had SRS radiation on a small brain met just as Denzie described. After craniotomy to remove 2 larger lesions in may, close monitoring with MRI found a new tiny lesion 4 months later that was successfully treated with srs. MRI (every few months ) should mean any new growth is found early and can be dealt with at that time. Best wishes for great success.

  • I have a stage 4 friend who had gamma knife at Mayo and it was a great success.

  • Thank you!

  • I haven't been through brain radiation, but my message to you would be to breathe and understand that we all have some cancer cells that go undetected, and our beautiful bodies find a way to deal with them.

    I don't even know if the chemo you're on now will penetrate the blood/brain barrier.

    I love a meditation CD for Cancer Patients by Belleruth Naparstek. There is evidence to support meditation.

  • Thank you I will look for the CD.

  • A question that is bound to come up as you research is "Can I have WBR and Gammaknife?" The answer is yes.

    Another is "How many can they treat with GK ?". I follow a woman on another site who has had 66. Hopefully you won't require that many just know that it is possible.

    The hippocampus preserving radiation that you are having is still pretty new and innovative (IMHO).

  • Yes, that is what Im afraid of that it will miss something because it is new but most say its worth the risk. I hope so. Thank you!

  • I had SRS for a single brain met, back in May 2015 (I'm Stage IV NSCLC - diagnosed 3/27/15). It worked perfectly for me with no side effects and no issues. In my cause, this was a one-time high dose treatment, specifically targeted to the exact area where the met was in my brain. It's now been 18 months since I had it done, and there has been no recurrence of that met or anything else in my Brain! YAY!

    I'm still in treatment for my Lung Tumor currently with Opdivo, and I do have rountine Brain MRI's and CT Scans.

    Good Luck

    Lisa

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