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Thread: Mother diagnosed with GBM - Doctor suggests carboplatin

  1. #21
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    Quote Originally Posted by Kiamey View Post
    If a person with multiple tumor is probably won't live long enough to suffer from the long term effects of the whole brain RT , where is the harm?
    Yes, that is the question. But also, where is the good?

    The thing is, it's all so unpredictable.

    The leader of the neuro-oncology department at the US government's National Institutes of Health told me that he has personally met longterm survivors of GBM with every kind of negative prognosticatory factor. (Advanced age, non-methylated tumor, multiple tumors, rapid recurrence, et cetera.) So there is always the possibility for longterm survival, and that has to be taken into consideration.

    Normally, if there was just one tumor present, the radiation oncologist would target any remaining tumor tissue, plus a margin around the tumor. If there are two tumors, why can't he do the same thing for both tumors? Is there a rationale for doing whole brain radiation rather than both areas? Can you ask him that?

    I honestly don't know the answer, but it is the question I would ask.

    Edited to add:

    One frustrating thing for GBM patients and caregivers is that even here, where we have access to some of the best neuro-oncologists, we still have to listen to doctors saying "I don't know" and telling us that it is up to us to decide. Unfortunately that is the situation with GBM treatment. The research is lagging behind the research for other cancers. I have hope that in the future it will be better.

    But for now it can leave us feeling like we have to find the answers ourselves, reading journal articles online, even if we have no medical or scientific training. It is just very frustrating, like an added weight on top of the problem of the GBM itself.
    Last edited by GBMsibling; 05-02-2016 at 12:54 AM.

  2. #22
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    I just emailed my concerns and asked the question you told me too. The thing is he told me before that the WBRT side effects will come like 10 years later. I do not know if it is true, because I read some opposite opinions on the internet. Of course he told me something about the brain capacity for WBRT which I did not quite understood. Maybe he is doing the RT, trying to manage the side effects at its least amount. That's what I have to wait for his respond.
    My mother has been on RT for 7 days now. and this is a critical situation.
    Thanks for your support dear Sibling

  3. #23
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    Well, I feel bad for you and your family in this situation and wish you all the best.

    I wish there were more and better answers...

  4. #24
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    I'm going to talk to my mom's dr about this. I wonder if it's something that she should be on with her temodal.

  5. #25
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    Carboplatin? I've never heard of it before. But if your mom's doctor has anything to say on the subject, please report back as the information could be helpful to Kiamey's mom's situation as well.

  6. #26
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    Actually carboplatin is not the subject any more. WBRT is our main concern. Someone I do not know is going to make an appointment with a NO about my mom's case at a university in the US. I hope I get some answers there.

  7. #27
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    That's the doctor's rationale for WBRT: ", if I want to cover all tumors and edema on T2 the field will be near whole brain.*" Does anybody know about the total dosage brain can receive and the damage. The problem is the doctor wants to remove both the tumors and the edema. And he wants it done soon. Can the brain bear the radiation 4600 twice but in a possible time interval provided that the second tumor won't grow?
    That's a lot of profesional questions

  8. #28
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    Wait, I don't understand this. Radiation does not treat edema. Edema means swelling. Edema isn't the disease, it's a symptom of the disease.

    I'm going to ask another moderator who knows more about radiation to comment.

  9. #29
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    The doctor definitely believes the "cystic area with peripheral enhancement" is a Glioma. He says he is determined to treat both tumors. And he believes Mom is at high risk. He says the long-time survival of your mom is the multiplication of two ten percent which is 1 percent. So there is no other options for him.
    I told him what if he treat the main one, and treat the other some time later. He answered he won't do that because it is highly probable that mom does not survive till then.

  10. #30
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    We go Friday. I will let you all know what they say.

 

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