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

Patient: Non-Hodgkin Lymphoma (NHL)

Patient Info: Newly diagnosed (has not begun treatment), Diagnosed: about 5 years ago, Female, Age: 66

  1. 1
    • HopeinIndy
    • Experience with Non-Hodgkin Lymphom...
    about 5 years ago
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    Diagnosed

    Oh No

    I just read about the WhatNext website in the newspaper and it seems like just what I need. Thank you, David Wasilewski! I am sure some higher power is guiding you. In late summer I divorced after a long marriage. The peace of mind was incredible and things were going well including work, new friends and a cozy little home. In fact, I lost weight -- about 20 pounds now. I thought it was probably due to getting out of a stressful relationship and getting a little more exercise. I was, if not happy, at peace and content. As autumn began, I noticed that I was more fatigued. But, because I'm being treated for anemia, I just thought it was time for another IV iron infusion. I knew that would happen at the beginning of 2012 (I've had two of these over the last two years). I also noticed a lump near my belly button but, oddly, never thought anything of it. I've always been healthy and never took regular medication. Finally, I began to have shooting pains through my hands so I went to my primary care physician thinking that I was developing some carpal tunnel symptoms. She did a brief physical exam and found the abdominal mass and ordered a CT scan. The scan indicated one large tumor 10.9 cm X 7cm or roughly the size of a baseball. There were others also in the abdomen and in the chest. The weird thing is that after that exam with my PCP, my hands never bothered me again. I'll comment more on this later but there have been several near-mystical things that have occured and this was one. The CT scan was followed by a PET scan, a bone marrow biopsy and a colonoscopy. I've had a paracentesis and a tumor biopsy. Three more tests are underway in order to customize my treatment plan. I believe that next week, I'll learn exactly what is the game plan. Because this all came about during Christmas, I dithered over whether to tell my daughters. At first I opted not to tell them but then, I realized that were the roles reversed, I'd desperately want to know about a loved one. So I told them two days before Christmas. Because I had a little more information, I was able to spin it positively. They were great and have been so kind to me. I expect that my young lionesses will be at my side through the entire thing. And, to sum up, despite my being sore from the biopsies, we had a great Christmas! What a blessing!!

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  2. 2
    • HopeinIndy
    • Experience with Non-Hodgkin Lymphom...
    about 5 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    Got the official diagnosis and it is follicular NHL but the biopsy showed some large B cells also. The doctor thinks something caused it to go into another phase. I'm officially stage 3. My first chemo was about a week ago. That wasn't bad but the next two days were challenging. I was very fatigued and quite mentally foggy. I think the prednisone gave me some jitters but I had absolutely no nausea. The treatment is R-CHOP.

    Easy to Do: Disagree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
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  3. 3
    • HopeinIndy
    • Experience with Non-Hodgkin Lymphom...
    over 4 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    I had 8 rounds of R-CHOP and had a very good experience with the first four. The last four had more of an impact with fatigue and brain fog.

    Easy to Do: Disagree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Neutral/NA
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  4. 4
    • HopeinIndy
    • Experience with Non-Hodgkin Lymphom...
    over 4 years ago
    HopeinIndy's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    After 8 rounds of R-CHOP, my tumor was quite diminished but not gone. I'm now doing Treanda/Rituxin therapy for 4 to 6 rounds. It is much easier on the body and my hair and nails are growing back. I just finished the fourth treatment and am now anticipating a CT scan to find out my status.

    Easy to Do: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
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