Suzy-q's Journey with Brain and Spinal Cord Tumors in Adults

Survivor: Brain and Spinal Cord Tumors in Adults

Patient Info: Finished active treatment less than 5 years ago, Diagnosed: almost 8 years ago, Female, Age: 62

  1. 1
    • Suzy-q
    • Experience with Brain and Spinal Cord T...
    about 5 years ago
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    diagnosis 10-22-09

    Oh No

    Neurosurgeons office CALLED to tell me the tumor was malignant! TACKY ENOUGH? Then to tell me that the local cancer center will see me on the following day. No compassion at all!!! on the phone ? geez!

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  2. 2
    • Suzy-q
    • Experience with Brain and Spinal Cord T...
    about 5 years ago
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    Craniotomy

    Procedure or Surgery

    I think recovery time was about what I expected, although I think it's more like one VERY long recovery process, and impact on my life is major impact, not minor...When you can no longer do what you are used to doing, that's major.

    Went as Expected: Neutral/NA
    Minimal Recovery: Neutral/NA
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Strongly Disagree
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  3. 3
    • Suzy-q
    • Experience with Brain and Spinal Cord T...
    about 5 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    dr. put me on temador along with radiaton tx. Took the temador tablets before bed, minimal side effects on single doses. Double dosages, taught me lessons! No side effects from radiation, except where the largest dosage was, still have thin hair on that spot.

    Easy to Do: Agree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Neutral/NA
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  4. 4
    • Suzy-q
    • Experience with Brain and Spinal Cord T...
    about 5 years ago
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    Job

    Loss

    This person has yet to add any details about this experience.

    1 Comment
  5. 5
    • Suzy-q
    • Experience with Brain and Spinal Cord T...
    about 5 years ago
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    External radiation

    Radiation

    This person has yet to add any details about this experience.

    Painless Experience: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
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  6. 6
    • Suzy-q
    • Experience with Brain and Spinal Cord T...
    about 5 years ago
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    mri contrast drug

    Clinical Trial

    This person has yet to add any details about this experience.

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  7. 7
    • Suzy-q
    • Experience with Brain and Spinal Cord T...
    about 5 years ago
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    Chemo brain

    Side Effects

    still have coordination problems, from the tumor locatio, comes & goes. The more tired I am, the worse it is, and then there is the twisted sentences.

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  8. 8
    • Suzy-q
    • Experience with Brain and Spinal Cord T...
    about 5 years ago
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    Finished treatment

    Celebration

    This person has yet to add any details about this experience.

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  9. 9
    • Suzy-q
    • Experience with Brain and Spinal Cord T...
    about 5 years ago
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    Job

    Loss

    This person has yet to add any details about this experience.

    0 Comments
  10. 10
    • Suzy-q
    • Experience with Brain and Spinal Cord T...
    about 5 years ago
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    if it returns??

    Decision Point

    Husband & I have discussed with the family that I will not have further treatment,

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  11. 11
    • Suzy-q
    • Experience with Brain and Spinal Cord T...
    about 5 years ago
    Suzy-q's Avatar

    freedom

    Loss

    I can't drive, possibility of seizures, so I am fairly home bound. Neighbors work, husband works. He is really good about getting me out... when he can see that I need more than go grocery shopping. I am so blessed to have him, he is definitely my rock. The MRIs are an intrusive part of my life, but I guess I will have to adjust to that

    1 Comment
  12. 12
    • Suzy-q
    • Experience with Brain and Spinal Cord T...
    over 3 years ago
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    Depression

    Oh No

    Seems like more bad days than good ones lately about 3 weeks now, not really depressed, just seem to be more like I was post-surgery...Tired, headaches, stumbling, left side weakness. Question of the day...WHICH DR. to call?

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  13. 13
    • Suzy-q
    • Experience with Brain and Spinal Cord T...
    over 3 years ago
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    so, now my PCP wants to treat my cholesterol issues!

    Other Care

    If You are non complying with treatment, the insurance carrier can drop you. I thought still being alive was celebration enough, but apparently that's not the right thinking...Any thoughts out there?

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  14. 14
    • Suzy-q
    • Experience with Brain and Spinal Cord T...
    almost 3 years ago
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    5 YEARS STABLE

    Milestones

    July 2014 Neurosurgeon claims I am a Poster child for Brain cancer! I suppose everyone has to excel at SOMETHING! Not that I would choose this, but I don't think you really get to choose :)

    1 Comment
  15. 15
    • Suzy-q
    • Experience with Brain and Spinal Cord T...
    almost 3 years ago
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    Other Care

    This person has yet to add any details about this experience.

    1 Comment
  16. 16
    • Suzy-q
    • Experience with Brain and Spinal Cord T...
    over 2 years ago
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    5 years!

    Milestones

    Hit the 5 year post-Diagnosis point, well now it's 5 1/2 years....No MRI or neurosurgeon follow up until Jan 2016, and no oncologist appointment until Feb 2016. Neurosurgeon says I am "living proof" work. He was on the local news recently , making progress on Deep Brain Stimulation for patients with tremors. One man has had his tremors stop completely & made a model Air Force jet plane for Dr. Vardiman.

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  17. 17
    • Suzy-q
    • Experience with Brain and Spinal Cord T...
    almost 2 years ago
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    Celebration

    6th Cancer Birthday! Doesn't seem like this "normal" has been six years. I still am scared every time I go for an MRI, I Don't care how long my leash is, it still frightens me, probably because it throws me back into reality.

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  18. 18
    • Suzy-q
    • Experience with Brain and Spinal Cord T...
    over 1 year ago
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    Oh No

    Seizures started again, with a couple of falls, called my Oncologist, yes let's move your Feb.2016 MRI to NOW! O.K., We get that done, just prior to Christmas, visit my neurosurgeon. Yes, there is something new, but really small. Gave me the option of going in to get it right away, or wait and repeat MRI to see if it changes. Hubby & I opt for wait, next MRI shows it isn't changing, hence it is probably just scar tissue.Next MRI coming up in April.... In the meantime my neurologist increased my Depakote dosage at night, seems to keeping things under control...Cross your fingers, y'all

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  19. 19
    • Suzy-q
    • Experience with Brain and Spinal Cord T...
    about 1 year ago
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    scar tissue?

    Side Effects

    Seems I now have "something else" showing up on my MRI Started with December's MRI, which was bumped up from February, because of a seizure/fall...has not grown or changed at all, and my NS has given me a longer leash, my neurologist increased my P.M. dose of Depakote, so no more seizures, but I don't know why scar tissue would be so late (7 years) post op

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