Lex88's Journey:

Survivor: Lung Cancer > Non-Small Cell > Large Cell Carcinoma > Large Cell Neuroendocrine Carcinoma

Patient Info: Finished active treatment less than 5 years ago, Diagnosed: almost 2 years ago, Female, Age: 31, Stage IA, EGFR mutation positive: Don't Know

  1. 1
    • Lex88
    • Experience with Large Cell Neuroendocrin...
    8 months ago
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    Just Diagnosed

    Oh No

    I was diagnosed with large cell neuroendocrine carcinoma of the cervix in April 2017. It was classed as stage 1 (but I have put 1A as just 1 not an option), grade 3, 5cm localised tumour. It had not metastasised.

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  2. 2
    • Lex88
    • Experience with Large Cell Neuroendocrin...
    8 months ago
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    Chemotherapy

    Drug or Chemo Therapy

    I underwent 5 cycles of etoposide + cisplatin, 3 days every 21 days. It was supposed to be 6 cycles but I developed kidney failure from the cisplatin and was in intensive care for a week (creatine levels were at 1000) + 2 weeks in the kidney ward before being discharged with the creatine level at 500. 10 months later the creatine is at 250, having also gone through a hysterectomy and radiotherapy in the meantime. The chemo side effects were awful for me. The first cycle wasn't too bad with vomiting and nausea for only 5 days (from day 2 of chemo until day 3 after chemo). The 2nd was about 7 days of that and the 3rd, 4th and 5th I never recovered from the vomiting and nausea before the next cycle started. I are very little if at all and was predominantly just drinking until the kidney failure set it and I couldn't even keep water down. I lost 20kg in weight.

    Easy to Do: Strongly Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
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  3. 3
    • Lex88
    • Experience with Large Cell Neuroendocrin...
    8 months ago
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    Surgery

    Procedure or Surgery

    I underwent a radical hysterectomy including ovary removal. This was not initially planned as my oncologist had hoped "only" chemotherapy would be needed. But upon consulting specialists for this type of cancer it was concluded that a radical hysterectomy and ovary removal would give me the best chance of long term survival. No cancer was detected on the MRI before the operation but the subsequent biopsy revealed a cancerous tumour (5mm). The operation was incredibly emotional for me as I don't have children and had hoped to carry a baby one day. Before undergoing chemotherapy my oncologist suggested egg removal in case they were to become eradicated or too damaged from chemo. Therefore I am lucky that I at least have 10 healthy 29 yo eggs waiting for me for potential future surrogacy :). The surgery went as planned and the surgeon was able to remove everything he needed to. However post surgical blood tests revealed low hemoglobin which we initially assumed was linked to my kidney failure. However this turned out to be internal bleeding so I had to have a 2nd operation 8 hours later. The operation was laparoscopic and aided by a robotic device, performed at the European Hospital Georges Pompidou in Paris.

    Went as Expected: Disagree
    Minimal Recovery: Agree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Strongly Disagree
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  4. 4
    • Lex88
    • Experience with Large Cell Neuroendocrin...
    8 months ago
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    External radiation

    Radiation

    I underwent 25 radiotherapy sessions, over 5 weeks. Targeted at my pelvic region. Again, no cancer was present on the MRI scan before radio but because it's such a rare and aggressive type of cancer, the approach has been radical.

    Painless Experience: Agree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
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  5. 5
    • Lex88
    • Experience with Large Cell Neuroendocrin...
    8 months ago
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    Clinical Trial

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

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  6. 6
    • Lex88
    • Experience with Large Cell Neuroendocrin...
    8 months ago
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    Remission

    Celebration

    In remission since May 2018

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