Confused !!!!

Hi all,

Just got back home had MRI of my brain done today and I'm unofficialy all clear which is obviously really good news . I have been wrestling with the decision whether or not I should do the prophylactic radiation , I had pretty much decided to do it. But now doc asked me to do a clinical trial designed to prove survival rates are better with the treatment . They basically will do same low dose radiation except they avoid the area that controls short term memory, which would make the decision to do the treatment a lot easier basically elliminating side effects. The down side is of course if that area is where the loose cells are the treatment won't destroy them. People in the trial don't get to decide if they want whole treatment or new treatment avoiding that area , it's like receiving placebo medication. So now I really don't know which way to go any more, any advise will be greatly appreciated.

Thanks,

RW

13 Replies

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  • RW, you and I are both here because someone at sometime participated in clinical trials using platinum doublets and again doing the platinum doublet with concurrent radiation. You have an opportunity to further medical science but the decision must be all yours. Let me restate what you've written from a different vantage point.

    Your dr recommended PCI and you had decided to do it. He then offered you an opportunity to participate in a clinical trial. One branch of that trial will receive Standard of Care, the other half will receive the PCI with hypocampus preserving screening. Neither type guarantees that you won't get brain mets, just that it has demonstrated that it would significantly reduce the probability that you will get it.

    You've been through so much already. But it's a tough choice. If you decide to do Standard of Care PCI ask for Namenda to help preserve cognitive function.

  • Thanks for your thoughts , I just feel like if a person does the radiation it makes more sense to treat your whole brain. But doc says less than 5 percent chance mets will start in area they are avoiding. And I also want to help the cancer community in any small way I can. I'm pretty sure I will just go ahead with the trial.

    Thanks

  • Whatever your decision we still want to hear about the experience. Best hopes for an excellent outcome either way.

  • From what I've read on vanderbuilt website it looks like at least I will get a pet scan out of the deal that my insurance wouldn't pay for otherwise. It's required by the trial rules I think. So that's a good thing

  • Yes that's excellent. I think Anita mentioned it, that your filled w up is much closer than if you proceed with standard of Care. The PET scan and the close follow up you will have in a trial is so precious there is no way to put a value on it.

  • RW,

    Denzie's answer is as good as you are going to get, she has pretty deep knowledge of standard cancer treatments.

    Tough decision! I suggest that you ask about monitoring and follow-up - how long will they be following you, how will they be following you, how does the monitoring differ from what you would receive if you have standard treatment and don't enroll, what happens if you show signs of metastisis? One possible advantage of enrolling would be more frequent follow-up than you would get normally, which could mean that if you did have metastisis later it might be caught a lot earlier than it would be otherwise. That could mean a better outcome for you regardless of which trial arm you ended up in.

    Anita

  • Thanks for your piece of mind, I definately want to help out the cancer community in any way possible obviously because as Denzie said we wouldn't be here if people before us hadn't participated in trials and such. I just seems like if you treat all areas of your brain except one , no doubt that's where mets will start. But I'm speaking from a lifetime of bad luck not education and clinical experience.lol I'm sure docs are right I definately put my trust in them, I'm sure I will go ahead with the trial.

    RW

  • I participated in a clinical trial but there were no placebo treatments involved. I felt very good about my participation but I am not sure I would have done it with the possibility of receiving a placebo. It's a decision we have to make individually. Don't feel bad if you just don't feel right about it.

    David - NSCLC

  • Thanks

  • I was thinking on this trial it's not truest like receiving a placebo. One way my entire brain gets treated the other way it gets treated just not that one area where damage from treatment is most likely.

    Thanks for your advise,

    RW

  • It is a really difficult decision that you need to make. Others have offered really good and valuable advise. If it was up to me, I would most likely do the clinical trial if I liked the answers i received after they answered all my questions. Ultimately the decision is yours.

  • Thanks

  • That's a really hard call -- I am not sure what I would do ? I wish you good luck and hope whatever you choose you have excellent results.

    Lisa

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