And so it goes

And so it goes

Hi all,

I started my clinical trial today and I found out I am the first patient to start this trial nation wide and the only patient in tennessee. When it's in full swing there will be just over a hundred participants . I have to admit letting them do radiation to my brain was the most uncomfortable task I hav had to do so far. ( by uncomfortable I mean scary). I was thinking 20 years ago going out on Friday night and frying my brain was thought of as the most fun a person could have with their boots on , but now not so much!!!! I have not noticed any side effects so far other than being freaked out by it . The meds they gave me is not namenda it's called memantine and I have to take it for a total of 24 weeks which is long after the radiation stops. Does anyone know anything about it? I have not yet had a chance to discuss it with research nurse, but I was hoping to not take quite so much additional meds. Thanks for being here. This pic is only 1 month supply of med I will be taking it for 6 months.

6 Replies

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  • Again, I give you much thanks and respect for participating in this trial. You rock!

    Re: memantine. This is the generic form of Namenda. This link will give you some information about it. This is a website I trust, the info is good. Are you receiving steroids as well?

    webmd.com/drugs/2/drug-7793...

  • Thank you for taking part in the trial. I realize how scary it must be to be the 1st to try something new, but just keep thinking about those that will benefit from your participation.

  • Following your journey RW. Many thanks for participating in this trial! Wishing you continued healing.

  • You are very brave. I wish you the best. Good thoughts and prayers for you.

  • Rw, quite the distinction - being the first to start the trial is pretty remarkable! As you know, this trial will bring important information to the researchers, thank you. I don't blame you for your feelings about radiation to your brain, must seem a very odd thing to do - maybe if you just pictured it as cleaning out any bad stuff that would help??? I love your sense of humor. You made me laugh out loud at work.

    Denzie's resource is a great one. WebMD is kind of the straight forward version of Medscape (which is more technical). Highly respected, but you may already know that, so I'll stop now.

    Keep us updated as you move along, and thank you again! Good luck!

  • Watching this thread with hope and gratitude. Thank you for contributing to advances in treating this disease. I admire your whole story, let's make it a long and happy one.

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