Joleneg's Journey with Non-Hodgkin Lymphoma (NHL)

Survivor: Non-Hodgkin Lymphoma (NHL)

Patient Info: Finished active treatment more than 5 years ago, Diagnosed: about 10 years ago, Female, Age: 49, Stage IV

  1. 1
    • Joleneg
    • Experience with Non-Hodgkin Lymphoma (...
    over 4 years ago
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    Diagnosed

    Oh No

    I had a swollen lymph node on my neck/clavical area. Had it removed and found out it was fNHL follicular Non-Hodgkin Lymphoma. Had never heard of it before that day. 39 (almost 40) years old with 5 kids. What the heck!

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  2. 2
    • Joleneg
    • Experience with Non-Hodgkin Lymphoma (...
    over 4 years ago
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    Bone marrow aspiration

    Procedure or Surgery

    Heard the aspiration was very painful - for me, it wasn't that bad. Was up an walking out with in 1/2 hour with only mild soreness.

    Went as Expected: Disagree
    Minimal Recovery: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
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  3. 3
    • Joleneg
    • Experience with Non-Hodgkin Lymphoma (...
    over 4 years ago
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    Implant chemotherapy port

    Procedure or Surgery

    I had thought the bone marrow aspiration was going to be the hardest surgery, but the port placement was wrong from the get-go. The port site was so painful, I would not let them draw blood from it, instead used my arm veins. It stopped working by the second treatment. I ended up having a DVT at the end of the catheter and had to have it removed and go on daily, self-injected blood thinner shots, than coumadin therapy. I refused a second port.

    Went as Expected: Strongly Disagree
    Minimal Recovery: Strongly Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Disagree
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  4. 4
    • Joleneg
    • Experience with Non-Hodgkin Lymphoma (...
    over 4 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    Lost my hair, was tired alot but the nausea was easily controlled by other meds.

    Easy to Do: Neutral/NA
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Agree
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  5. 5
    • Joleneg
    • Experience with Non-Hodgkin Lymphoma (...
    over 4 years ago
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    Problem with doctor

    Oh No

    After treatment I was asking the locum doctor that had been assigned to me what was next. He said "Oh, you'll be back in less than 2 years needing treatment." (fNHL can come back). I promptly dropped him and requested another dr that would be on my side. I knew it could come back, but he didn't know how, I as an individual, would respond to treatment. I'm 5 years out with NED! Fat-lot he knew!

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  6. 6
    • Joleneg
    • Experience with Non-Hodgkin Lymphoma (...
    over 4 years ago
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    Birthday

    Celebration

    Every birthday, kids, hubands and especially mine, make me aware of how lucky I am. I have had 5 more years of good and bad!!

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  7. 7
    • Joleneg
    • Experience with Non-Hodgkin Lymphoma (...
    over 4 years ago
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    NED - No Evidence of Disease!

    Celebration

    Right before Christmas, just after my 4th treatment, I had a scan that showed NED. Opted to continue and have 5th & 6th treatment. I felt I would always wonder "what if" if I had decided against the last 2 treatments and the cancer returned quickly.

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