Shelbel1e's Journey with Non-Hodgkin Lymphoma (NHL)

Survivor: Non-Hodgkin Lymphoma (NHL)

Patient Info: Finished active treatment more than 5 years ago, Diagnosed: almost 11 years ago, Female, Age: 41, Stage IV

  1. 1
    • Shelbel1e
    • Experience with Non-Hodgkin Lymphoma...
    almost 5 years ago
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    I felt like crap with a fever and sore joints. Dry cough.

    Oh No

    I had just spent three weeks in the Caribbean and was the happiest i had ever been. I felt like I was coming down with a cold for a week, sore joints, still muscles, aches, chills, and a dry cough. I went to follow up with my Dr. and she told me I could have malaria. I had a low grade fever which I thought was the result of the malaria. No such luck. They admitted me to the hospital to track my fever and run tests. My dr. told me I might have aides or cancer and I freaked out since I was barely 30. They did a couple of test on a huge mass that i had never noticed on my chest and let me know that I was the lucky winner of a cancer diagnosis.

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  2. 2
    • Shelbel1e
    • Experience with Non-Hodgkin Lymphoma...
    almost 5 years ago
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    Surgery

    Procedure or Surgery

    Chest Wall biopsy. Ouch

    Went as Expected: Disagree
    Minimal Recovery: Disagree
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Neutral/NA
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  3. 3
    • Shelbel1e
    • Experience with Non-Hodgkin Lymphoma...
    almost 5 years ago
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    Diagnosed

    Oh No

    I was diagnosed with Castleman's Disease. A very rare and very agressive non-hodgkins lymphoma. It was so rare they had to sent it to the Mayo clinic to diagnose. Happy 30th birthday to me.

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  4. 4
    • Shelbel1e
    • Experience with Non-Hodgkin Lymphoma...
    almost 5 years ago
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    Implant chemotherapy port

    Procedure or Surgery

    I had a crappy surgeon. Make sure that you get a good surgeon. My friend Paul was awake for his port-a-cath placement. I don't recommend that. Have them knock you out. Also, make sure the suregeon does not place the port right under the incision. It should go above or below the tissue. Then everytime it was accessed, you get a small pinch, unless you are pushing through the scar tissue caused by the surgery. Also, I had a lot of problems with it being accessed properly throughout my chemo.

    Went as Expected: Neutral/NA
    Minimal Recovery: Neutral/NA
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
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  5. 5
    • Shelbel1e
    • Experience with Non-Hodgkin Lymphoma...
    almost 5 years ago
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    CHEMO CAN CAUSE INFERTILITY!!!!!

    Procedure or Surgery

    I never knew this about chemotherapy. Luckily my good friends had my back. I had my eggs harvested and frozen before having chemotherapy. My dr. did not want to wait, but I didn't know that I could be infertile afterwards. Also there was a 2-3% chance that the chemo could alter my DNA.

    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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  6. 6
    • Shelbel1e
    • Experience with Non-Hodgkin Lymphoma...
    almost 5 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    They gave me the highest dose of chemo that you can give a person without killing them. My infusions were a 120 hours long. They were administered in the ICU unit at Summerlin Hospital in Las Vegas. I would enter the hospital on a Monday, have 5 days of straight chemo, be released for two weeks and repeat. Chemo was hard. I didn't have too many side affects. Nausea was minimal. i did end up with some nueropathy at the end with number fingers, lips, and toes by the end. I also ended up nuetropenic with an infection and ended up in the hospital for another 5 days. The worst part about the chemo was being locked up in the hospital for 5 days in a row. I wore my own clothes in the hospital and refused to let them wake me up at all hours of the day. I received Hyper-CVAD cancer. It consisted of Cytotoxin, Vincristine, Doxirubicin, and Dexamethasone. Plus some kind of kidney greaser so that they wouldn't kill off any of my other organs while doing it. I had six rounds of treatment.

    Easy to Do: Disagree
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Disagree
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  7. 7
    • Shelbel1e
    • Experience with Non-Hodgkin Lymphoma...
    almost 5 years ago
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    Chemo brain

    Side Effects

    This is not a joke. It really does become hard to think and focus. What do you expect when they are poisoning you. Not everything is going to work like you think it should.

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  8. 8
    • Shelbel1e
    • Experience with Non-Hodgkin Lymphoma...
    almost 5 years ago
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    Low white blood cell counts (neutropenia)

    Side Effects

    Yep. Despite all the medications, I went neutropenic in the end and ended up in the hospital for 4 days. I was on a very restricted diet. Nothing raw. For this California salad eating girl, that was very difficult

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  9. 9
    • Shelbel1e
    • Experience with Non-Hodgkin Lymphoma...
    almost 5 years ago
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    Weight gain

    Side Effects

    Thank you steroids for the sweet tooth. I ate everything sugary. I couldn't help my self. Steroids are wicked for a sweet tooth. Cancer feeds on sugars. Be careful here.

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  10. 10
    • Shelbel1e
    • Experience with Non-Hodgkin Lymphoma...
    almost 5 years ago
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    Hot flashes

    Side Effects

    Ask for Benadryl to the main vein. Stops the hot flashes immediately. I still hot flash like nobody's business,but hey, I'm alive. I'll take it.

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  11. 11
    • Shelbel1e
    • Experience with Non-Hodgkin Lymphoma...
    almost 5 years ago
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    Nerve damage (peripheral neuropathy)

    Side Effects

    Yep, numb fingers, toes, lips. They kill it all. Luckily I was able to tolerate the entire protocol of chemo. It did take a toll however.

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  12. 12
    • Shelbel1e
    • Experience with Non-Hodgkin Lymphoma...
    almost 5 years ago
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    Fatigue (tiredness)

    Side Effects

    By the end, I was sick with chemo, sick with the flu, neutropenic, and just flat out tired. I ended up finally taking a month off and going to sleep on my mom's couch and walk on the beach each day. It was amazing and exactly what I needed.

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  13. 13
    • Shelbel1e
    • Experience with Non-Hodgkin Lymphoma...
    almost 5 years ago
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    Hair loss (alopecia)

    Side Effects

    This was the absolutely worst part of the whole experience. I started to lose my hair after the first treatment. I curled up on the bottom of the shower floor and sobbed like a baby while it was coming out in handfuls. Luckily, I was prepared. I had purchased a wig prior to this even happening. My best friend/ hair dresser came to the hospital and shaved my head. I pretty much rocked the bald look during the whole time. Wigs are hot!!!1

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  14. 14
    • Shelbel1e
    • Experience with Non-Hodgkin Lymphoma...
    almost 5 years ago
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    Remission

    Celebration

    Whoohooo! 6 years in remission to the date. Please focus on the whole mind, soul, body connection. You have the power to positive think!

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