bill1967's Journey with Skin Cancer - Melanoma

Patient: Skin Cancer - Melanoma

Patient Info: Currently in active treatment (initial surgery, receiving chemo rounds/radiation), Diagnosed: about 6 years ago, Male, Age: 50, Stage IV, BRAF mutation positive: Yes, c-kit positive: Yes

  1. 1
    • bill1967
    • Experience with Skin Cancer - Melanoma
    over 4 years ago
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    Simple removal surgery

    Procedure or Surgery

    3/31/11: Removed black mole near front of right ear. (Diagnosed as melanoma, Clark's Level IV (2.4mm deep))

    Went as Expected: Agree
    Minimal Recovery: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
    0 Comments
  2. 2
    • bill1967
    • Experience with Skin Cancer - Melanoma
    over 4 years ago
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    Sentinel lymph node biopsy

    Procedure or Surgery

    4/22/11: Wide excision of area in front of right ear and SLN biopsy. Four nodes removed, one positive with 0.18 mm micro metastasis. (Stage IIIa)

    Went as Expected: Agree
    Minimal Recovery: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
    0 Comments
  3. 3
    • bill1967
    • Experience with Skin Cancer - Melanoma
    over 4 years ago
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    Full lymph node dissection

    Procedure or Surgery

    5/22/11: Complete lymph node dissection on right side of neck (37 nodes removed, all negative). Some nerve damage which caused shoulder droopage, but generally resolved with 8 weeks of physical therapy.

    Went as Expected: Agree
    Minimal Recovery: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
    0 Comments
  4. 4
    • bill1967
    • Experience with Skin Cancer - Melanoma
    over 4 years ago
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    Immunotherapy

    Drug or Chemo Therapy

    Sylatron (7/11 to 3/12): 2 months high-dose; rest of treatment low-dose until recurrence in 3/12 Very tired first two months during high-dose, but still able to work. Very few issues with low-dose through discontinuance.

    Easy to Do: Strongly Disagree
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Agree
    0 Comments
  5. 5
    • bill1967
    • Experience with Skin Cancer - Melanoma
    over 4 years ago
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    Cancer is back/Recurred

    Oh No

    3/12: Subcutaneous recurrence along wide excision incision. Biopsied and confirmed to be melanoma. Sylatron is discontinued.

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  6. 6
    • bill1967
    • Experience with Skin Cancer - Melanoma
    over 4 years ago
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    Surgery to remove cancer that has spread

    Procedure or Surgery

    3/12: Removed subcutaneous recurrence along base of incision (near midline of neck). Confirmed to be melanoma (2.5 cm).

    Went as Expected: Agree
    Minimal Recovery: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
    0 Comments
  7. 7
    • bill1967
    • Experience with Skin Cancer - Melanoma
    over 4 years ago
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    Cancer is back/Recurred

    Oh No

    6/4/12: PET scan shows enlarged node near larynx. Biopsied and confirmed to be melanoma. (Note: This node never reappeared in any future PET scan.) 7/12: CAT and PET scans show disease progression: enlarged nodes near shoulder, enlarged node near hylar region of right lung.

    0 Comments
  8. 8
    • bill1967
    • Experience with Skin Cancer - Melanoma
    over 4 years ago
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    Surgery to remove cancer that has spread

    Procedure or Surgery

    7/12: Surgery to remove 3 cm submandibular mass for processing in future tumor infiltrating lymphocyte (TIL) study at NIH. (TIL cells were successfully extracted and grown in the lab.)

    Went as Expected: Agree
    Minimal Recovery: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
    0 Comments
  9. 9
    • bill1967
    • Experience with Skin Cancer - Melanoma
    over 4 years ago
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    Tumor Infiltrating Lymphocytes (at NIH)

    Clinical Trial

    8/20/12 through 9/10/12 at National Institutes of Health (NIH-09-C-0123). Randomized with TBI. Only received 2 grays of TBI (out of 12 possible) due to patient safety reasons. Received lab-grown TIL cells plus stem cells (CD34+) and 5 high-doses of IL-2 (over a three day period). Just back home. Energy is decent. Appetite is decent. Rescan on 10/4/12.

    0 Comments
  10. 10
    • bill1967
    • Experience with Skin Cancer - Melanoma
    over 4 years ago
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    Cancer is shrinking

    Celebration

    October 2012: One month post-TIL, the tumors have shrunk by 35%. The node in the hylar region of my lung is "flat as a pancake".

    0 Comments
  11. 11
    • bill1967
    • Experience with Skin Cancer - Melanoma
    over 4 years ago
    bill1967's Avatar

    Cancer is shrinking

    Celebration

    November 2012: Two months post-TIL treatment, the tumors have now shrunk by 65%.

    0 Comments
  12. 12
    • bill1967
    • Experience with Skin Cancer - Melanoma
    over 4 years ago
    bill1967's Avatar

    Cancer is shrinking

    Celebration

    December 2012: Three months post-TIL treatment, my doctors have said that the tumors are "almost gone."

    0 Comments
  13. 13
    • bill1967
    • Experience with Skin Cancer - Melanoma
    almost 2 years ago
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    Remission

    Celebration

    July 2014: First completely clear scan. I am NED (no evidence of disease)!

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  14. 14
    • bill1967
    • Experience with Skin Cancer - Melanoma
    almost 2 years ago
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    Remission

    Celebration

    January 2015: Six-month confirmation scans are still clear. I'm still NED. Officially classified as a Complete Responder to the TIL trial I was in at NIH.

    2 Comments
  15. 15
    • bill1967
    • Experience with Skin Cancer - Melanoma
    over 4 years ago
    bill1967's Avatar

    Hair is back

    Celebration

    December 2012: At three months post-TIL, my hair on the side of the head is back. The hair on top of my head is thin, but returning, too. One interesting observation by my doctors: My formerly blond hair is coming back without pigment. They believe this is an indication that the TIL is attacking the melanocytes in my hair follicles, which color the hair. I'm now a platinum blond.

    0 Comments