Starting trial

Hi all,

Next week I am starting that clinical trial doing the prophylactic radiation . Even though patients don't know whether we will get total treatment or memory preserving treatment ( it's called hippocampus something I can't ever remember) any way they are offering namenda a drug that delays memory problems caused by radiation (not prevent just delay) but if I receive the preserving treatment this med is totally unnecessary . Does anyone know if this is a good idea or not . Docs say it's up to me but feels like they think it's a good idea. But with this brain stuff I have found them to be a little less willing to offer their opinion than usuall.

Thanks,

RW

12 Replies

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  • Wow! I'm so excited to read this. Thank you.

    I've two acquaintances who took Namenda , one with Prophylactic Cranial Irradiation (PCI), the other with Whole Brain Radiation (WBR). Both expressed they were glad to be using it. I only wish it had been available for my mom's WBR.

    From the bottom of my heart, my gratitude to you for participating.

  • Thanks for your advise and support.

  • I have not heard of this RW, and hope that it all goes well for you. Knowing others have tried the drug gives some reassurance on its use. I know what you mean about docs less willing to give their opinion, it does cause a little nervousness, but I would like to think that the doctors would be voicing a strong opinion if they thought that it would cause any harm.

    Good Luck

    Ed

  • RW,

    I understand where you are coming from on taking the drug - my motto all along has been to take no more drugs than I need, because long term effects can be hard to predict. The brain is kind of a special case, isn't it? I personally would be inclined to take it, but I would also be burning up the Internet trying to learn as much about the drug as possible.

    High five to you for deciding to join this clinical trial. You will be helping the doctors figure out the best way to use this particular treatment, and benefit many other people.

    Anita

  • Thanks for your support

  • Rw, thank you for updating us again, we really appreciate hearing how you are right now. And thank you for doing the trial, you are helping so many by joining in. I imagine you are having lots of mixed feelings, please know we are all thinking of you. This sounds hopeful. And just from a purely personal level, I believe if it was me, I would opt to take the med - just one of those completely individual decisions. Hugs and sending best wishes.

  • Thanks for your support

  • I can't speak to weather it's a good idea or not but I can say that my mother-in-law took Namenda for Alzheimer's related dementia and it seemed to work well with virtually no side effects. It can be hard to read between the lines with docs and clinical trials. Trust your intuition and don't look back. Wishing you all the best.

    Peg

  • Well said, Peg!

  • Thanks for your support

  • Wishing you the best. We are an,pious to hear how it all goes.

  • That's anxious.

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