caensminger's Journey with Skin Cancer - Melanoma

Patient: Skin Cancer - Melanoma

Patient Info: Living with cancer as a chronic illness (undergoing adjuvant therapy), Diagnosed: almost 8 years ago, Female, Age: 44, Stage IV, BRAF mutation positive: Yes, c-kit positive: Don't Know

  1. 1
    almost 3 years ago
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    Surgery

    Procedure or Surgery

    Initial tumor removal. Pathology/Lab discovered it was Melanoma. This is the first time anyone told me I had cancer.

    Went as Expected: Agree
    Minimal Recovery: Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
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  2. 2
    almost 3 years ago
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    Wide excision surgery

    Procedure or Surgery

    I ended up with some nerve damage to my ear, plus a drain coming out of my chest.

    Went as Expected: Neutral/NA
    Minimal Recovery: Disagree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Neutral/NA
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  3. 3
    almost 3 years ago
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    Sentinel lymph node biopsy

    Procedure or Surgery

    Doc dod not find the sentinel node.

    Went as Expected: Disagree
    Minimal Recovery: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Strongly Agree
    0 Comments
  4. 4
    almost 3 years ago
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    Ipimumilab

    Clinical Trial

    Ipimumilab had been FDA approved for Stage 4 melanoma. At this point, I had stage 3C and took part in a trial to have it approved for stage 3 patients. It worked nicely for a couple years.

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  5. 5
    almost 3 years ago
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    Cancer is back/Recurred

    Oh No

    Metastasized to the lungs

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  6. 6
    almost 3 years ago
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    Immunotherapy

    Drug or Chemo Therapy

    Now I'm stage 4. Ipimumilab worked before, so I went back on it.

    Easy to Do: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
    0 Comments
  7. 7
    almost 3 years ago
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    Cancer has spread/Metastasized

    Oh No

    Had a seizure. Turns out I had two melanoma brain tumors. The large one was the size of a golf ball.

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  8. 8
    almost 3 years ago
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    Surgery to remove cancer that has spread

    Procedure or Surgery

    The large tumor was removed via regular brain surgery.

    Went as Expected: Agree
    Minimal Recovery: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
    0 Comments
  9. 9
    almost 3 years ago
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    Laser surgery

    Procedure or Surgery

    Gamma knife surgery to zap the small tumor and to "sweep the tumor bed" of the larger tumor that had been removed "manually".

    Went as Expected: Agree
    Minimal Recovery: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
    0 Comments
  10. 10
    almost 3 years ago
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    Immunotherapy

    Drug or Chemo Therapy

    Switched immunotherapy to Nivolumab.

    Easy to Do: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
    1 Comment
  11. 11
    almost 3 years ago
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    Cancer is back/Recurred

    Oh No

    The "manual" brain surgery must have left behind a few cancer cells in the muscular tissue on it's way out. Because, about a year after that surgery I have two large tumors in the temporalis muscle.

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  12. 12
    almost 3 years ago
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    Cancer is back/Recurred

    Oh No

    Cancer is in the brain again.

    1 Comment
  13. 13
    almost 3 years ago
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    Surgery to remove cancer that has spread

    Procedure or Surgery

    This surgery begins a really difficult period that lasts until today. The wound from this surgery didn't heal well. Infection occurred. Several rounds of antibiotics. The wound aspect takes on a miserable story of it's own. Three more surgeries couldn't close it. At this moment, I'm eight weeks into having a wound vac attached to me 24/7. Dressing changes are extremely painful and occur three times per week. Sleep and and degree of comfort are elusive. At this moment, I have 2-3 more weeks of the same before I hope to be eligible for a skin graft.

    Went as Expected: Disagree
    Minimal Recovery: Strongly Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
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  14. 14
    almost 3 years ago
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    External radiation

    Radiation

    Five weeks of radiation to the temporal area. Five days per week. This contributed heavily to the surgical wound not healing.

    Painless Experience: Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Disagree
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  15. 15
    almost 3 years ago
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    Laser surgery

    Procedure or Surgery

    Gamma knife surgery. Fairly easy.

    Went as Expected: Strongly Agree
    Minimal Recovery: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
    0 Comments
  16. 16
    almost 3 years ago
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    Laser surgery

    Procedure or Surgery

    Gamma knife again. Rather easy.

    Went as Expected: Strongly Agree
    Minimal Recovery: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
    0 Comments
  17. 17
    almost 3 years ago
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    Cancer is back/Recurred

    Oh No

    Melanoma, two tumors, found in the left side of my brain for the first time. Previous brain tumors had been on the right side only.

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  18. 18
    almost 3 years ago
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    Out of approved treatments. Couldn't get into a trial. My oncologist didn't have any options and was befuddled. Went back to UCLA to exhaust all options.

    Decision Point

    UCLA oncologist was able to clear a path towards two treatments, neither of which has much chance of helping at all. But we are trying.

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  19. 19
    almost 3 years ago
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    Immunotherapy

    Drug or Chemo Therapy

    Started Pembroluzimab/Keytruda along with Mekinist chemo at the same time. It's hard to determine which caused what side effect. My best guess is the diarrhea and regurgitation are caused by the pembroluzimab.

    Easy to Do: Agree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
    0 Comments
  20. 20
    almost 3 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    Started 2 mg of Mekinist per day about the same time I also started the pembroluzimab. I experienced a HORRIFIC rash over 100% of my body. I had sores in my mouth, eyelids, my nostrils peeled along with red bumps, bursting capillaries, raised bumps and eventually a full body peel on 100% of me. Took two courses of Prednisone and discontinued treatments until it was "under control".

    Easy to Do: Agree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
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  21. 21
    almost 3 years ago
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    Rash

    Side Effects

    Horrific rash over entire body. I never want to go through that again. Prednisone and a break from treatment where necessary. Still dealing with the aftermath of all the skin that was damaged.

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  22. 22
    almost 3 years ago
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    Constipation

    Side Effects

    I expected diarrhea. I ended up with mild constipation that also lead to a "blockage" in my GI tract. This blockage caused regurgitation. No nausea, sick or green feeling accompanied it. Also, no sweats or stomach acid came up. I just regurgitated food if there wasn't room for it to travel down. The feeling was upper GI pressure, severe discomfort, shallow breathing and panic. Once I looked at the toilet though, the food would come out, and I'd feel better within 30 minutes.

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  23. 23
    almost 3 years ago
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    Home care

    Other Care

    Home nurses come over three times per week for dressing changes, vitals, picc line maintenance, etc.

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