Margaret's Journey with Follicular Lymphoma

Patient: Non-Hodgkin Lymphoma (NHL) > B-Cell Lymphoma > Follicular Lymphoma

Patient Info: Currently in active treatment (initial surgery, receiving chemo rounds/radiation), Diagnosed: almost 11 years ago, Female, Age: 70

  1. 1
    • Margaret
    • Experience with Follicular Lymphoma
    over 10 years ago
    Margaret's Avatar

    Diagnosed

    Oh No

    From an innocuous lump to stage 4 cancer within a few weeks

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  2. 2
    • Margaret
    • Experience with Follicular Lymphoma
    over 10 years ago
    Margaret's Avatar

    Surgery

    Procedure or Surgery

    Had the lump removed and then waited for biopsy results, which resulted in an initial diagnosis of NHL, then a stage 4 NHL, then possible bone cancer, then back to NHL after 2 PET/CAT scans.

    Went as Expected: Strongly Agree
    Minimal Recovery: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
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  3. 3
    • Margaret
    • Experience with Follicular Lymphoma
    over 10 years ago
    Margaret's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    Physically I have been fortunate, in that I have no nausea, mouth sores, or fatigue. My complete hair loss has been very, very difficult to accept, live with, or tolerate. I have an excellent wig, but it looks nothing like me, and I feel like a fraud when I'm wearing it. Emotionally, I find chemotherapy to be an intense experience and very draining. I feel as if my spirit has been altered and that my very essence has been touched. I find it takes me several weeks to get back inside myself spiritually, only to have to go back for another 'round. I accept that it is saving my life and a necessity. When I see the CPMC building I feel nauseous; I will never eat another "Goldfish" cracker again. They have them stacked in piles for snacking and the very sight of them turns my stomach now. I can only think of recliner chairs, the beep of the infusion machines, the IVs, the $10,000 treatment, and the fear that I won't go into remission.

    Easy to Do: Strongly Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
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  4. 4
    • Margaret
    • Experience with Follicular Lymphoma
    over 10 years ago
    Margaret's Avatar

    Hair loss (alopecia)

    Side Effects

    Where are other women out there who are having a hard time with this as well? I feel so alone in this journey, and wonder if other women feel as I do - sort of like a neuter, with no gender at all. I miss my hair more than anything!!!!

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  5. 5
    • Margaret
    • Experience with Follicular Lymphoma
    over 10 years ago
    Margaret's Avatar

    Oh No

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

    0 Comments
  6. 6
    • Margaret
    • Experience with Follicular Lymphoma
    over 10 years ago
    Margaret's Avatar

    Oh No

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

    0 Comments
  7. 7
    • Margaret
    • Experience with Follicular Lymphoma
    over 10 years ago
    Margaret's Avatar

    Cancer is shrinking

    Celebration

    I had my third PET/CT scan on 12/5; on 12/6 I saw my oncologist and I am in complete remission. This is almost impossible to believe. I have to pinch myself; my life has been nothing but cancer, cancer, cancer since I was diagnosed with stage IV back in August. I still have to do two more chemotherapy sessions (I despise the word infusion and therefore won't use it) and then I have to do maintenance chemotherapy for two more years. My hair won't even start growing until March of 2012. That's ok. All I care about is being alive, and having "it" GONE, hopefully forever.

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