GregRx's Journey with Nodular lymphocyte predominant Hodgki...

Survivor: Hodgkin Disease > Nodular lymphocyte predominant Hodgkin disease

Patient Info: Finished active treatment more than 5 years ago, Diagnosed: almost 19 years ago, Male, Age: 34, Stage II

  1. 1
    • GregRx
    • Experience with Nodular lymphocyte pred...
    over 4 years ago
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    Diagnosed

    Oh No

    I had a lump on my neck that my PCP thought was bacterial/inflammatory and it didn't responsd to ABX. It was biopsied and came back as Hodgkins Lymphoma. I had just finished my freshman year of high school.

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  2. 2
    • GregRx
    • Experience with Nodular lymphocyte pred...
    over 4 years ago
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    Surgery

    Procedure or Surgery

    I had a neck biopsy and subsequent diagnosis of Hodgkins Disease. As a 14-15 year old boy in high school, a large scar on my neck was unsightly and I wish I could have gotten smaller sutures. The scar has all but faded at this point in my life, but then it was a large annoyance and unattractive in my eyes. I would wear many hooded sweatshirts during this time to help cover it up.

    Went as Expected: Agree
    Minimal Recovery: Agree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
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  3. 3
    • GregRx
    • Experience with Nodular lymphocyte pred...
    over 4 years ago
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    Implant chemotherapy port

    Procedure or Surgery

    I don't remember choosing this, but as a 14 year old they were probably going the good route of saving my veins. The procedures went fine for implant and later ertraction, but there was a bit of pain and apprehension for each stick until I developed quite a bit of scar tissue over the port site. The Emla cream helped numb it a bit. Probably the good route to go for most people going through chemotherapy, especially young adults/children.

    Went as Expected: Agree
    Minimal Recovery: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
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  4. 4
    • GregRx
    • Experience with Nodular lymphocyte pred...
    over 4 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    I had an okay experience with chemotherapy. I consulted with the Nebraska Medical Center (Dr Armitage) as well as Siouxland Regional Cancer Center (now June Nylen?...Dr Wender). They both agreed the Stanford V regimen was the best for my Stage II Bulky Disease. I had cancer surrounding my liver, abdomen, heart lungs, and throughout my neck. The MDs were surprised I wasn't Stage III or IV by the amount of cancer per Gallium and CT scans I showed. I underwent 12 weeks of the Standford V regimen. After chemotherapy the cancer was absent but I still was sent on for radiation treatment. I was nauseated a few times during chemotherapy, but I don't recall ever throwing up. I was very tired though and just slept on my couch in my basement at home for most of the summer with friends and family visiting. I recevied G CSF shots through the 2nd half of my chemo regimen.

    Easy to Do: Disagree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Strongly Disagree
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  5. 5
    • GregRx
    • Experience with Nodular lymphocyte pred...
    over 4 years ago
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    External radiation

    Radiation

    Radiation was a pretty poor experience for me. It was during my sophomore year of school. My hair had not totally recovered, I was a pimply faced teenager with braces, now 80 year old looking hair, and I skipped class in the afternoons to drive 45 minutes to Sioux City, IA for radiation treatment DAILY. This lasted for 35 days I believe deep into that fall. I lost almost 30 pounds from my post chemo weight (chemo gain of 10-15 lbs due to Prednisone dosing). I couldn't stand to eat things like ice cream because the radiation destroyed my throat lining.

    Painless Experience: Agree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
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  6. 6
    • GregRx
    • Experience with Nodular lymphocyte pred...
    over 4 years ago
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    Other

    Side Effects

    I have several side effects that I feel were due to chemotherapy/radiation. My hair grows in weird on the lower half of the back of my head (where the radiation field ended). I have hypothyroidism but haven't treated it yet clinically. One day soon I'm sure the thyroid won't keep up with the demand and burn out. Synthroid is cheap and I'm not too worried about this. I get dry mouth and hoarse MUCH easier than others. Just lecturing to a room or group becomes hard after 10 minutes. I have very dry skin, most noticeably in the winter (live in the midwest). I have an elevated bilirubin I just discovered but this may just be Gilbert's Syndrome (you can google this, looks pretty benign).

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  7. 7
    • GregRx
    • Experience with Nodular lymphocyte pred...
    over 4 years ago
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    Remission

    Celebration

    That Christmas during my sophomore year of high school, I was pronounced cancer free. I have been in remission ever since, with one small scare prior to moving on to college but a PET scan ruled out a chest mass as scar tissue due to the large disease I had cleared out with chemo/radiation. I have been cancer free now for almost 14 years. My oncologist finally told me to stop coming to get checkups there and see a PCP. The issue now with the continuum of care for cancer patients is that the transition is poor. PCPS many times don't know what kind of seconary issues we face and need information on what we experienced clinically, emotionally, and physically. I have been blessed since my remission. I met a beautiful woman, we were able to have children, and I have two great boys.

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