jREINHARDT's Journey with High-Grade Astrocytoma (also called G...

Patient: Brain and Spinal Cord Tumors in Adults > Glioma > Astrocytoma > High-Grade Astrocytoma (also called Glioblastoma)

Patient Info: Living with cancer as a chronic illness (undergoing adjuvant therapy), Diagnosed: about 5 years ago, Male, Age: 39

  1. 1
    • jREINHARDT
    • Experience with High-Grade Astrocyt...
    over 4 years ago
    jREINHARDT's Avatar

    Surgery

    Procedure or Surgery

    Underwent Frontal lobe craniotomy under semi-emergency conditions. Cancer was found after i had a seizure while driving home from the grocery store. Everyone else was not injured, but i did do a fair amount of damage to my car and the house i hit.

    Went as Expected: Strongly Disagree
    Minimal Recovery: Strongly Disagree
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Neutral/NA
    0 Comments
  2. 2
    • jREINHARDT
    • Experience with High-Grade Astrocyt...
    over 4 years ago
    jREINHARDT's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    I have undergone 1x42 of temodor, 5x 5/23 temodor, and I am still participating in clinical trial N0877 (Sprycel- Double blind) Finished my final cycle in November 2012 and so far everything is "Dormant". Remission is a word they never use with a Glioblastoma Multiforme.

    Easy to Do: Strongly Disagree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Neutral/NA
    0 Comments
  3. 3
    • jREINHARDT
    • Experience with High-Grade Astrocyt...
    over 4 years ago
    jREINHARDT's Avatar

    External radiation

    Radiation

    Went through 30 doses of radiation with the 42 days cycle of oral chemo. Total dose was 6000 units over those 30 days.

    Painless Experience: Strongly Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Disagree
    0 Comments
  4. 4
    • jREINHARDT
    • Experience with High-Grade Astrocyt...
    over 4 years ago
    jREINHARDT's Avatar

    N0877- Ongoing

    Clinical Trial

    Still participating in N0877 (Sprycel). No end date for the trial is set, but could be ended by the usual suspects, bad reaction, progression, etc. So far no bad reactions from the trial.

    0 Comments
  5. 5
    • jREINHARDT
    • Experience with High-Grade Astrocyt...
    over 4 years ago
    jREINHARDT's Avatar

    Seizure Control

    Drug or Chemo Therapy

    Currently trying to minimize my level of seizures. Was on 500mgx twice daily of Keppra from surgery, until July with no seizures. Began having seizures approx 6 months after surgery with a total of 5 so far. I am currently on almost the max dosage of keppra at 1825mg x twice daily of keppra and 200mg x twice daily of Vimpat. Began this level in late Nov. 2012 and i have my fingers crossed. Clinical trial limits the other medications I can try, so if this does not work, high likelyhood I would have to drop out of the trial if they will not un-blind it for me.

    Easy to Do: Strongly Agree
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Disagree
    1 Comment
  6. 6
    • jREINHARDT
    • Experience with High-Grade Astrocyt...
    about 4 years ago
    jREINHARDT's Avatar

    30 Days since last seizure

    Celebration

    It has been 30 days since my last seizure and cross my fingers/ knock on wood/ and any other superstisous thing you can think of, my doctors might have this seizure thing under control.

    1 Comment