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: over 5 years ago, Female, Age: 65

  1. 1
    • Margaret
    • Experience with Follicular Lymphoma
    over 5 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 5 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 5 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 5 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 5 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 5 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
    about 5 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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