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Type: Posts; User: Oregongirl87

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    Second surgery

    I had my second surgery on Wednesday and was discharged Friday. I’m still recovering in the area. I see the surgeons assistant tomorrow then it’s up to me when I feel like I can ride home. I am...
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    I’m so sorry. I’m going through my first...

    I’m so sorry. I’m going through my first recurrence right now that they believe is still grade 2. How often are your scans? My most recent one in May looked okay, but my doctor always compares my...
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    Well I found out tonight that the tumor board...

    Well I found out tonight that the tumor board suggests surgery. I had the choice of 2 clinical trials, both vaccines. I picked one and so surgery will be this summer. I have a video call with the...
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    Change in my scan

    Well I guess my tumor seems to have grown a little. I hear back Thursday after the tumor board meeting. My NO thinks it’s likely surgery will be suggested and possibly some clinical trial options....
  5. Thread: Update

    by Oregongirl87
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    The first time I had one was the reason for my...

    The first time I had one was the reason for my MRI. I had migraines without the visual part for like 10 years years before that. My NO has been cautious to rule them out as seizures because of where...
  6. Thread: Update

    by Oregongirl87
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    You hit the nail on the head. This last time, I...

    You hit the nail on the head. This last time, I went down a rabbit hole of anxiety leading up to my appointment. I feel so crazy when that happens, like I start worrying about other things being...
  7. Thread: Update

    by Oregongirl87
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    Update

    I had my scan Friday and it was stable. I was very nervous because I had an increase in these visual episodes I get. My NO and neurologist havent really known what to make of them, my NO being more...
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    So glad you gave an update, I have been wondering...

    So glad you gave an update, I have been wondering about you! Glad things are going great and congrats on the grand baby!
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    Thanks! I had a scan midway through my...

    Thanks! I had a scan midway through my pregnancy, without contrast and that looked good. This is the first I've had contrast in a year, and we are so happy.

    And so happy to hear that Rhonda!...
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    Boring scan

    I had my scan yesterday and the small residual tumor is still stable. This is especially great news for us because 8 weeks ago I had a baby boy. My NO gave me the okay, and everything went...
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    Hey mccindy I haven't commented on here in a...

    Hey mccindy I haven't commented on here in a while, but I lurk a lot and have been watching your updates. This really isn't the same situation I know, but after my surgery, my brain could not...
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    Still Stable

    Its been 2.5 years now and 6 months from finishing my trial. Just had my 12 week scan on Friday. Everything is still looking good, and it was such a relief. I felt like I had some weird stuff...
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    Cindy, I think we do have the same type of...

    Cindy,
    I think we do have the same type of tumor. I had IDH1 mutated, but I do not have the 1p19q codeletions. I also know that I have ATRX retained, which I don't really know what that means. ...
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    Oh so sorry to hear there is growth. I'm glad to...

    Oh so sorry to hear there is growth. I'm glad to hear it hasn't upgraded. Will be thinking of you. Interesting about the two types of contrast too, didn't know they had that.
  15. Hey Disastergirl. I have a right temporal lobe...

    Hey Disastergirl. I have a right temporal lobe glioma. Mine is a grade II astrocytoma. I had surgery about 2 and a half years ago. Mine was in a good location for surgery, and most of it was...
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    Finished my clinical trial

    I have officially finished my clinical trial. I was only able to do 22 out of the 24 months due to a very nasty upper respiratory/ sinus infection that lasted nearly 3 months. But I had my scan today...
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    Thank you! It was kind of an accident. I had a...

    Thank you! It was kind of an accident. I had a weird visual episode followed by a really bad migraine that lasted 4 days. I just kept going back to the doctor and being persistent and saw the right...
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    Almost done

    I had my scan and everything is still looking nice and stable. I also finish my clinical trial in December, which I have mixed feelings about. I think although this chemo isn't nearly as rough as...
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    Oh no! The other day I was just thinking I hadn't...

    Oh no! The other day I was just thinking I hadn't seen you on here for a while. Sending good thoughts about your scan and hope it's nothing serious.
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    Hey, glad to hear it went well. Thanks for...

    Hey, glad to hear it went well. Thanks for letting us know. Take care of yourself!
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    I would have made the same choice. That seems...

    I would have made the same choice. That seems just too long of a wait. Good luck with your surgery, and I will be thinking of you!
  22. I had my recent scan and everything looks boring....

    I had my recent scan and everything looks boring. I also get to decide if I want to make the drive for my scans after my trial ends. (6 more months of everolimus!). At this point I will. She seemed...
  23. Thread: Sucks!

    by Oregongirl87
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    Oh goodness. I am sending good thoughts your way...

    Oh goodness. I am sending good thoughts your way and hoping it's nothing.
  24. Could it be depression possibly? I have been...

    Could it be depression possibly? I have been following your posts and to say you are dealing with a lot would be a bit of an understatement.
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    I threw up a few hours after I swallowed my...

    I threw up a few hours after I swallowed my temodar. It was awful, I threw up for like 2 and a half hours because I thought I had taken my zofran. and it wasn't. I didn't realize I had done that for...
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