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  1. Thread: not great MRI

    by NikosF
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    not great MRI

    went for a routine MRI yesterday and unfortunately they saw a new enhancing spot. small - 7x9mm. It could be a recurrence, treatment effect, or even a meningioma (it's right up against the dura). ...
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    (Sorry if this reply comes up twice). your...

    (Sorry if this reply comes up twice).

    your friend has had some major issues - pneumonia and a blood clot are valid reasons to delay biopsy.

    Perhaps the results weren't good and they have...
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    Blessed GBM awareness day to all!

    Letís hope any increased awareness accelerates the development of a better treatment.
  4. Thread: Trouble walking

    by NikosF
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    I would be surprised if the walking issues were...

    I would be surprised if the walking issues were not associated with her prior treatment, even if not associated with tumor growth.

    I think physical therapy would help - but preferably from someone...
  5. Thread: Itís back

    by NikosF
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    Emmi, While this sucks big time, there is...

    Emmi,

    While this sucks big time, there is still hope. Lots of people have recurrences and still do well. Prayers.
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    RACL, sirry to hear about this development. ...

    RACL,

    sirry to hear about this development. If your insurance doesn't want to cover it, speak to the social worker where you are being treated about patient assistance funds.
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    Seizures are, in all but rare cases, manageable...

    Seizures are, in all but rare cases, manageable with medication. I suggest finding a epileptologist with experience in brain tumors - they may need to do an in-patient study with him hooked up to an...
  8. Thread: intro

    by NikosF
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    Take a look at Cheryl Broyles :...

    Take a look at Cheryl Broyles : https://www.cherylbroyles-gbm.com/

    She has had a ton of recurrences - and keeps on ticking. Unfortunately recurrence is a real possibiity with GBM but she shows...
  9. Thread: Eight years

    by NikosF
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    Eight years

    8 years ago this morning this journey started. I remember waking up in the ER with a man in a white coat with NEUROSURGERY embroidered on it leaning over me. I couldnít move because the EMTs had...
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    Do you have an epileptologist available near you....

    Do you have an epileptologist available near you. They are the true experts, as opposed to NSs and NOs. That made all the difference for me in seizure management.
  11. Thread: Surgery again:(

    by NikosF
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    Hang in there. Have you thought about getting...

    Hang in there. Have you thought about getting another opinion before committing to this path?
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    sorry to hear that - falls can be devastating for...

    sorry to hear that - falls can be devastating for older folks. I hope she bounces back.
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    First off - don’t assume your diagnosis is...

    First off - don’t assume your diagnosis is terminal. People can live for years with a glioblastoma.

    What state are you in? Is medical cannabis legal there?

    Also not sure what law would stop...
  14. Thread: Finally free

    by NikosF
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    May his memory be eternal

    May his memory be eternal
  15. Thread: intro

    by NikosF
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    jqh, Only thing I'd add is to be your own...

    jqh,

    Only thing I'd add is to be your own advocate and if you feel strongly about something - push hard. Doctors don't know everything and can be reluctant to try unproven things. If you do want...
  16. Thread: Introduction

    by NikosF
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    Jeny, Sorry to hear you are both going through...

    Jeny,

    Sorry to hear you are both going through this. Have you seen a neuro-oncologist yet - not just an oncologist?

    I don't know how far Duke in NC is for you? It might be worth going for a...
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    Way to go PastorSteve Sounds like you have a...

    Way to go PastorSteve

    Sounds like you have a great attitude.
  18. Thread: New positives

    by NikosF
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    Congratulations, and Vimpat is good stuff -...

    Congratulations, and Vimpat is good stuff - finally got my seizures under control with it.
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    olllie79, Some things like the CUSP9 protocol...

    olllie79,

    Some things like the CUSP9 protocol - still have drugs that need to be prescribed. It might be worth trying to find a clinic elsewhere in Europe that might be willing to see her and...
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    The longer I have this disease the more I’ve come...

    The longer I have this disease the more I’ve come to admire those who call time on the fight. It’s a pretty basic survival instinct you are going against.
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    John McCain hospice?

    Looks like McCainís battle is nearing its end. Sad - regardless of oneís politics.
    ...
  22. As Sib said, I would recommend Northwestern in...

    As Sib said, I would recommend Northwestern in Chicagi. You could even see Roger Stupp (of Stupp protocol fame). I don't think it's unusual to get consults from a remote NO who can work with a more...
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    There is a lot of good information on off-label...

    There is a lot of good information on off-label drugs here : http://astrocytomaoptions.com/
  24. Thread: Hole's in Head

    by NikosF
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    Petra / Rock, THe bones re-grow / fuse again...

    Petra / Rock,

    THe bones re-grow / fuse again so any hole will be filled up with new cells.

    I had a discernable gap where the section of skull was removed for my surgery and now when I run my...
  25. Thread: Gbm

    by NikosF
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    3,200

    dee, Was the dex reduced from 4mg to 2mg in...

    dee,

    Was the dex reduced from 4mg to 2mg in one step, or was it slowly reduced?

    Dex needs to be tapered down slowly to allow the body to produce its own corticosteroid which gets shut down by...
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