Jacquie's Journey with Diffuse Large B-Cell Lymphoma

Survivor: Non-Hodgkin Lymphoma (NHL) > B-Cell Lymphoma > Diffuse Large B-Cell Lymphoma

Patient Info: Finished active treatment less than 5 years ago, Diagnosed: about 7 years ago, Female, Age: 49, Stage II

  1. 1
    • Jacquie
    • Experience with Diffuse Large B-Cell L...
    almost 5 years ago
    Jacquie's Avatar

    Diagnosed

    Oh No

    In April (2010) during my first year of teaching, I started feeling extremely fatigued and having problems in my throat/neck with my voice, swallowing, etc. I found a lump under my collar bone on the left side. After several CAT scans and tests we found a large mass on my heart that had grown up into my neck. I had to go on the internet to find a "thoracic cardiovascular surgeon" because local doctors had no idea who to see except to get away from this rural area and head towards Chicago. I used the internet to find the best surgeon in this state, and luckily I called him the same day in June I was diagnosed. They got me into Loyola the next day and we spent the whole day figuring out what to do. We did several biopsys from my neck, but could not name the tumor (that came when the tumor was removed from my heart and sent to Mayo). I had open heart surgery in July and am still here!

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  2. 2
    • Jacquie
    • Experience with Diffuse Large B-Cell L...
    almost 5 years ago
    Jacquie's Avatar

    Surgery

    Procedure or Surgery

    I had open heart surgery on July 15,2010. I did not realize how bad this would be. I have no lung function on my left side (my diaphragm was knicked during surgery and stays up where my lung should be on the left). I had the top half of my paricardium replaced with an artificial material (which had never been tried/exposed to R-Chop so we were'nt sure what would happen). I have to take maintenance meds for my heart rate. BUT I AM STILL HERE!!

    Went as Expected: Strongly Agree
    Minimal Recovery: Strongly Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Disagree
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  3. 3
    • Jacquie
    • Experience with Diffuse Large B-Cell L...
    almost 5 years ago
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    Implant chemotherapy port

    Procedure or Surgery

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

    Went as Expected: Agree
    Minimal Recovery: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Agree
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  4. 4
    • Jacquie
    • Experience with Diffuse Large B-Cell L...
    almost 5 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    Started R-CHOP chemo 3 weeks after open heart surgery. It was not a good experience! I believe the worst thing is you are so sick and feeling horrible and then to top it all off, you have to lose your hair in addition to the huge scar from throat to tummy and the five tube scars and then the port scar. It was a tough time, but again, necessary to still be here today.

    Easy to Do: Disagree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Strongly Disagree
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  5. 5
    • Jacquie
    • Experience with Diffuse Large B-Cell L...
    almost 5 years ago
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    External radiation

    Radiation

    The 2 months of radiation itself seemed like a cake walk after open heart surgery and the chemo, however, I have permanent nerve damage to my back (lots of itching and burning). Also, the scar tissue from the radiation near my heart makes it very hard to determine if there is still tumor there, or if it is just scar tissue. It increated 2 millimeters recently, but I was told that scar tissue can expand slightly as you heal.

    Painless Experience: Agree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
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  6. 6
    • Jacquie
    • Experience with Diffuse Large B-Cell L...
    almost 5 years ago
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    Infertility (unable to have children)

    Side Effects

    This should let you pick more than one. I have chemo brain, memory changes, heart rate issues, mouth sores, constipation, hair loss, hot flashes, and permanent infertility. There are alot of changes that went along with the chemo. Also because of the low immune system, the summer after I finished chemo, I got the shingles for 3 months. In Illinois, anyone under 50 is not allowed to have a shingles vaccine (not even with a doctors note!).

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  7. 7
    • Jacquie
    • Experience with Diffuse Large B-Cell L...
    almost 5 years ago
    Jacquie's Avatar

    Finished treatment

    Celebration

    Still here!! Finished all treatment March 2011.

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  8. 8
    • Jacquie
    • Experience with Diffuse Large B-Cell L...
    almost 5 years ago
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    Hair is back

    Celebration

    Took 14 months, but my hair came back!!

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