Patient Advice

This page contains advice from other LGL Leukemia patients who are in the Facebook group

What should I ask my doctor after being diagnosed?

  1. What type of LGLL do I have? (You will have either Chronic NK-cell or T-cell)
    • If you have T-LGLL: Do I have alpha-beta or gamma-delta? (This isn’t super important, but it might have an impact on treatment at some point)
  2. Have you treated LGLL before?
    • If no: Do you feel comfortable treating LGLL?
  3. Do I need treatment?
    • If yes:
      • Why do I need treatment? What are you looking at to make that decision?
        • What are my hemoglobin, neutrophils, and platelets?
      • What medication will I start on?
      • What side effects should I expect?
      • What should I do if I get side effects? (You may want to ask if they have an answering service – where when you call the office number after hours, a company will answer, then a doctor will call you later)
        • Which ones should I call you about ASAP?
        • Which ones should I call the office about the next time it is open?
        • Which ones should I tell you about at the next appointment?
      • When will I start?
      • How frequently will I be getting blood draws/seeing you?
      • Is there anything I should avoid? Foods, supplements, vitamins, alcohol, etc.
      • What should I do if I get a fever? Should I take Tylenol (acetaminophen) or should I call you first?
    • If no:
      • Why don’t I need treatment?
      • What blood counts are we keeping an eye on/what will determine I need treatment?
      • How often will I be getting blood drawn? (as a note, if your doctor says it will be a long time in between appointments, tell your oncologist! They should be willing to work with you and see you more frequently!)
      • What symptoms should I keep an eye out for?
        • Which should I inform you of immediately?
        • Which should I call the office about the next time it is open?
        • Which should I wait until our next appointment for?
      • What should I do if I get a fever? Should I take Tylenol (acetaminophen) or should I call you first?
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