erie94's Journey with Non-Hodgkin Lymphoma (NHL)

Patient: Non-Hodgkin Lymphoma (NHL)

Patient Info: Finished active treatment less than 5 years ago, Diagnosed: almost 6 years ago, Female, Age: 41, Stage II

  1. 1
    • erie94
    • Experience with Non-Hodgkin Lymphoma (NHL)
    about 5 years ago
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    Lost loved one

    Loss

    My father passed at age 70 only 4 months before my diagnosis.

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  2. 2
    • erie94
    • Experience with Non-Hodgkin Lymphoma (NHL)
    about 5 years ago
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    Diagnosed

    Oh No

    First diagnosed after three doctors and one month of being diagnosed with a sinus infection and later a Doc added bronchitis. My symptoms were headache, dizziness, trouble breathing, swelling of face when bending over esp. in the morning and waking up with a swollen face. Finally, after much frustration and a visit to the ER, which brought on another misdiagnosis of anxiety, I found an internal medicine doctor. He figured out that "something was pressing/obstructing my SVC of my heart. So an exray and a CT scan later, I was informed I had a tumor in my chest in front of my right lung and my heart. Size: 9.1x9.8x12.1 cm found on OCTOBER 28 2011.

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  3. 3
    • erie94
    • Experience with Non-Hodgkin Lymphoma (NHL)
    about 5 years ago
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    Lymphedema

    Side Effects

    Lymphedema in the left arm. I wasn't diagnosed until after remission, so during the cancer, I thought it was the SVC syndrome, which causes slow blood circulation from from the head & arms to the heart. I hadn't even received treatment, yet I lived with this terrible condition, so I just coped. My husband tied my left arm to the top of the bed frame to help with the "flow". Now I know that this problem is with me for the rest of my life and that a compression garment helps with the "tight" feeling or swelling, and physical therapy is necessary!!! So, talk to your doctor if you feel any "tightness" in your limbs, so I hear it's common with breast cancer, although it may occur on the legs for others. Just ask!!

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  4. 4
    • erie94
    • Experience with Non-Hodgkin Lymphoma (NHL)
    about 5 years ago
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    Surgery

    Procedure or Surgery

    Biopsy of the tumor, I still feel pain on the chest muscles when using my right arm. They say it takes a year to heal completely. I'm almost there!!! :D

    Went as Expected: Disagree
    Minimal Recovery: Disagree
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Strongly Disagree
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  5. 5
    • erie94
    • Experience with Non-Hodgkin Lymphoma (NHL)
    about 5 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    My lymphodema on the left arm was affected by the chemo. One of the veins running through my wrist is now swollen and is painful now and again to this day. Learned my lesson when skipping meds. Although you're warned, the degree of nausea and dizziness was unexpected. One episode of dizziness lasted 2 hours and my head was in my pilow the whole time. I couldn't move, yet my head was spinning. Ugly feeling!! I'm so glad it's over. God willing, I will never again feel the feeling.

    Easy to Do: Strongly Disagree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
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  6. 6
    • erie94
    • Experience with Non-Hodgkin Lymphoma (NHL)
    about 5 years ago
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    Hair loss (alopecia)

    Side Effects

    Lost so much hair all at once that my daughter ran to the room in tears! I just shaved the whole thing to avoid watching more fall out. Also, I didn't have to clean up after all the hair falling everywhere. So I killed two birds with one stone!!

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  7. 7
    • erie94
    • Experience with Non-Hodgkin Lymphoma (NHL)
    about 5 years ago
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    Mediastinal-must be internal

    Radiation

    Felt fatigued mostly, and there's no pain, which was a relief after chemo. Although they say the damage to my heart and other internal organs are a high risk, I feel better that the chances of a recurrence has been drastically reduced with radiation.

    Painless Experience: Strongly Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
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  8. 8
    • erie94
    • Experience with Non-Hodgkin Lymphoma (NHL)
    about 5 years ago
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    Fatigue (tiredness)

    Side Effects

    Happy that my hair is growing again, but still feel very tired after work, I'm not used to being idle, yet I have no choice.

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  9. 9
    • erie94
    • Experience with Non-Hodgkin Lymphoma (NHL)
    about 5 years ago
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    Remission

    Celebration

    Although I saw the tumor still present on the scan, and assumed I'd have to repeat the treatment, I was wrong. All I have left is scarring, and I consider it a deflated balloon, cancer free!!!! Plus my hair is growing back!!

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  10. 10
    • erie94
    • Experience with Non-Hodgkin Lymphoma (NHL)
    about 5 years ago
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    Nerve damage (peripheral neuropathy)

    Side Effects

    Nerve pain is awful! As a kid, did you ever take a size 9V battery to your tongue to see what it feels like? Yes....... multiply that feeling to "various-degrees" and you get nerve pain! Now on meds that feel like I'm ready for a nap, again and again!!

    1 Comment
  11. 11
    • erie94
    • Experience with Non-Hodgkin Lymphoma (NHL)
    almost 5 years ago
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    Other Care

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

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  12. 12
    • erie94
    • Experience with Non-Hodgkin Lymphoma (NHL)
    almost 5 years ago
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    Clinical Trial

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

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  13. 13
    • erie94
    • Experience with Non-Hodgkin Lymphoma (NHL)
    almost 5 years ago
    erie94's Avatar

    Ozone Treatments

    Other Care

    I drive three hours one way to get to Mexicali, MX, in order to receive treatment. This weekly treatment should help the Nerve Damage caused possibly by the radiation. They draw blood and mix it with the ozone (O3) then re-inject it into my bloodstream. If I'm too dehydrated my veins are too small. After Chemo and other injections my veins are pretty damaged. So they perform a rectal treatment. It just feels like you're bloated for a while, then you're fine. This treatment is known to replace chemo and other cancer treatments. I didn't learn about it until after remission, yet so far, it has helped my nerve pain. I'm excited to see if the side effect left by the past treatments is eliminated completely.

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