• Phylte
    • Experience with Primary Central Nervous...
    about 5 years ago
    Phylte's Avatar

    Job

    Loss

    Have been unable to work for past three years because of cancer and related complications.

    Read More

    0 Comments
    • Phylte
    • Experience with Primary Central Nervous...
    about 5 years ago
    Phylte's Avatar

    About six weeks in to treatment I wanted to discontinue it.

    Decision Point

    I continued treatment and achieved signs of temission sx months after diagnosis but remain in treatment still, three years after onset.

    Read More

    0 Comments
    • Phylte
    • Experience with Primary Central Nervous...
    about 5 years ago
    Phylte's Avatar

    Relationship

    Loss

    Both family members and some friends chose to terminate contact with me because of my poor prognosis. This was devastating.

    Read More

    0 Comments
    • Phylte
    • Experience with Primary Central Nervous...
    about 5 years ago
    Phylte's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    A minimum of two weeks a month as an in patient for 14 months was required. Later three more years of outpatient treatment with imm...

    Read More

    Easy to Do: Disagree
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Disagree
    0 Comments
    • Phylte
    • Experience with Primary Central Nervous...
    about 5 years ago
    Phylte's Avatar

    Surgery

    Procedure or Surgery

    Recovering from open craniotomy for biopsy was a struggle while dealing with decisions regarding chemo and living circumstances.

    Read More

    Went as Expected: Strongly Agree
    Minimal Recovery: Disagree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
    0 Comments
    • Phylte
    • Experience with Primary Central Nervous...
    about 5 years ago
    Phylte's Avatar

    Misdiagnosed

    Oh No

    Was sent home after ER CT scan clearly showed location and specificity of cancer.

    Read More

    0 Comments
    • dhtdiver
    • Experience with Primary Central Nervo...
    over 5 years ago
    dhtdiver's Avatar

    Anniversary

    Celebration

    I just got the results of my Semi-Annual MRI --Stable, no change, no enhancement. In other words: PERFECT!! This marks my 6th anni...

    Read More

    2 Comments
  1. over 7 years ago
    Powerofhope's Avatar

    Milestones

    Yesterday marked the one year anniversary of my discharge from Sloan Kettering where I had my second autologous stem cell transplant...

    Read More

    0 Comments
  2. over 7 years ago
    Powerofhope's Avatar

    Spent the Holidays at home with my wife and our two sons.

    Milestones

    One year ago I was in a hospital room at Sloan Kettering having my second autologous transplant. This week was the week when my army...

    Read More

    1 Comment
    • juliaholly
    • Experience with Primary Central Ner...
    almost 8 years ago
    juliaholly's Avatar

    Deciding to do a brain biopsy or not.

    Decision Point

    Docs said the only way to confirm the diagnosis is brain biopsy, but at 81 I don't want to put her through that. They told us they c...

    Read More

    0 Comments
    • juliaholly
    • Experience with Primary Central Ner...
    almost 8 years ago
    juliaholly's Avatar

    Unclear diagnosis

    Oh No

    Docs say they think my mom has PCNS Lymphoma. They have come to that diagnosis by process of elimination and because she has inflamm...

    Read More

    1 Comment
  3. almost 8 years ago
    Powerofhope's Avatar

    Milestones

    I would like to wish everyone a Happy Thanksgiving! One year ago I was at Sloan Kettering having my stem cells harvested for my seco...

    Read More

    0 Comments
  1. 1
  2. 3
  3. 4
  4. 5