happydad's Journey with Skin Cancer - Melanoma

Patient: Skin Cancer - Melanoma

Patient Info: Currently in active treatment (initial surgery, receiving chemo rounds/radiation), Diagnosed: almost 6 years ago, Male, Age: 62, Stage IV, BRAF mutation positive: No, c-kit positive: Don't Know

  1. 1
    • happydad
    • Experience with Skin Cancer - Melanoma
    over 5 years ago
    happydad's Avatar

    Diagnosed

    Oh No

    Didn't appreciate the seriousness at the time. Was in the Denver airport on our way to our son's college graduation when I got the phone call from my dermatologist. Met the surgeon the day after we returned home.

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  2. 2
    • happydad
    • Experience with Skin Cancer - Melanoma
    over 5 years ago
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    Sentinel lymph node biopsy

    Procedure or Surgery

    The melanoma was on my scalp. Surgeon did a wide excision in May and then another wider excision in July after the surgeon and oncologist consulted. The sentinel node biopsy was negative. They recommended surgery be followed up with Interferon. I endured that for a year, felt like a bad flu, but I still went to work everyday. My employer let me put a recliner in my office in case I needed it and it did use it.

    Went as Expected: Agree
    Minimal Recovery: Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Agree
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  3. 3
    • happydad
    • Experience with Skin Cancer - Melanoma
    over 5 years ago
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    Immunotherapy

    Drug or Chemo Therapy

    Was on Interferon for a year from August 2009 to September 2010. Was tough. I still worked and even traveled out of state and country for work. When traveling I had to give myself my own injections. Not fun! I sometimes wonder how I actually kept working, but work kept me going too.

    Easy to Do: Strongly Disagree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Strongly Disagree
    0 Comments
  4. 4
    • happydad
    • Experience with Skin Cancer - Melanoma
    over 5 years ago
    happydad's Avatar

    Finished treatment

    Celebration

    It felt good to finally be done with the Interferon. In retrospect it took almost 10 months before I really felt like my old self. I remember sitting in my office in July 2011 and realizing, "Hey, I feel great!" When I first discussed chemotherapy with the oncologist in May of 2009, I asked what the downside of not doing it might be. He said I could be gone by Christmas. The celebration of doing Interferon is that I have had Christmas with my family in 2009, 2010, and 2011.

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  5. 5
    • happydad
    • Experience with Skin Cancer - Melanoma
    over 5 years ago
    happydad's Avatar

    Anemia

    Other Care

    In November of 2011 I became very anemic. After two transfusions, I had an endoscopy and colonoscopy. When I woke up from the procedures, the doctor told me that he found a large cancerous mass in my stomach and a polyp in my colon. He ordered biopsies and called me the next day to tell me that both the mass in my stomach and polyp were melanoma.

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  6. 6
    • happydad
    • Experience with Skin Cancer - Melanoma
    over 5 years ago
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    Cancer has spread/Metastasized

    Oh No

    After the endoscopy results it became a roller coaster ride of emotions and tests and surgery. PET-CT scan showed cancer in multiple locations in my abdominal area in addition to the large tumor in my stomach.

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  7. 7
    • happydad
    • Experience with Skin Cancer - Melanoma
    over 5 years ago
    happydad's Avatar

    Surgery to remove cancer that has spread

    Procedure or Surgery

    Had surgery to remove the large tumor from my stomach. Now have a smaller stomach and smaller appetite! Lost about 20 pounds within the first few weeks of surgery. Still have more to lose to get to my ideal weight. Surgeon looked around my abdominal cavity and discovered melanoma in multiple locations that really are not possible to remove surgically. Radiation not an option for the abdominal area because of the multiple locations.

    Went as Expected: Agree
    Minimal Recovery: Disagree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Strongly Disagree
    0 Comments
  8. 8
    • happydad
    • Experience with Skin Cancer - Melanoma
    over 5 years ago
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    Brain MRI

    Procedure or Surgery

    The surgeon and oncologist ordered a brain MRI before I was discharged from the hospital after my surgery. The MRI showed two melanoma tumors in my brain. One in the right frontal lobe, and the one they are most concerned about is in my PONS, the central control unit of the brain.

    Went as Expected: Not Specified
    Minimal Recovery: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
    0 Comments
  9. 9
    • happydad
    • Experience with Skin Cancer - Melanoma
    over 5 years ago
    happydad's Avatar

    Other

    Loss

    One of the hardest things is to not get up and go to work. I have worked at the same place for 30 years. My calendar and my mind were filled with ideas and projects for work and now I don't get to pursue them. How do I fill my time with meaningful activity. I know that I need to use the time I have to focus on the most important part of my life, my family. I feel sad to feel that there will many important occasions that I will miss and I feel sad for my family that I won't be there for those events. I want to make every day count for them.

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  10. 10
    • happydad
    • Experience with Skin Cancer - Melanoma
    over 5 years ago
    happydad's Avatar

    External radiation

    Radiation

    Because there were only two tumors, stereotactic radiosurgery was used on both tumors. Now I wait for three months to see if it was effective. All my doctors are telling me it is time to think about disability/medical retirement and to get my affairs in order. That was tough to hear for me and my wife. However, I cried when the radiation oncologist told I wasn't allowed to drive, because I tumors in my brain. Now on extended sick leave as I face all of this.

    Painless Experience: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Disagree
    0 Comments
  11. 11
    • happydad
    • Experience with Skin Cancer - Melanoma
    over 5 years ago
    happydad's Avatar

    Immunotherapy

    Drug or Chemo Therapy

    My oncologist referred me to melanoma specialist who recommended ipilimumab as the first option for drug therapy. I start the treatment tomorrow. Not sure how I will feel during and immediately after the treatment. I am going to try and do everything I can to squeeze in a few more Christmases with my family if possible.

    Easy to Do: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
    1 Comment
  12. 12
    • happydad
    • Experience with Skin Cancer - Melanoma
    over 5 years ago
    happydad's Avatar

    Hospitalization

    Other Care

    Became very weak after recovering from the stomach tumor surgery. Discovered that I was diabetic. My sugar was checked while in the doctor's office and was over 600. Had been getting weaker and weaker and couldn't climb stairs. It was determined that I had diabetic ketoacidosis. Now I am on insulin and together with my wife we are managing the sugar and am feeling some better. My doctor prescribed physical therapy and build lost muscle in my legs and upper body. It has been helping.

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  13. 13
    • happydad
    • Experience with Skin Cancer - Melanoma
    over 5 years ago
    happydad's Avatar

    Hospitalization

    Other Care

    Passed out after a session of physical therapy. I thought my sugar was low and drank some juice and thought I felt okay. Started to walk across the room to leave. Next thing I remember was two therapists helping me into a chair. My wife took me to the hospital and they admitted me. Turns out it wasn't the sugar. Had another brain MRI and more tumors were found. Neurologist determined that I had a complex focal seizure and prescribed Keppra. So I am now on on Keppra and decadron. Seems to be controlling the problem.

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  14. 14
    • happydad
    • Experience with Skin Cancer - Melanoma
    over 5 years ago
    happydad's Avatar

    External radiation

    Radiation

    While in the hospital for seizure, started a ten-day full brain radiation treatment regimen.

    Painless Experience: Strongly Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
    0 Comments
  15. 15
    • happydad
    • Experience with Skin Cancer - Melanoma
    over 5 years ago
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    MRI and PET-CTscans

    Other Care

    Following the last treatment I recently had a brain MRI and also a PET-CT scan. MRI showed that there were no new brain tumors this time and those already there are stable. That was good news. The results of the PET-CT scan was not as encouraging. Multiple new tumors on organs, lungs, liver, and odd places like my shoulder and leg. Good part of this is that I still have no pain. Biggest challenge is the fatigue, but I still have my mental faculties (at least I think so!).

    0 Comments
  16. 16
    • happydad
    • Experience with Skin Cancer - Melanoma
    over 5 years ago
    happydad's Avatar

    Decided to try Temodar after reading experiences from other patients. PET-CT scan scheduled for early September to see what the results look like. Still very lucky that I have no other pains.

    Decision Point

    Options now being considered are to do nothing. As long as I don't have pain and can function, keep doing what I want to do and enjoy each day. A second option is to try Temodar (temolozide). The list and types of side effects don't sound attractive and I wonder what my quality of life would be like while taking it. Third option, the Dartmouth chemotherapy regimen which sounds as bad or worse that interferon. Last option being considered is possible clinical trials, but that means lots of travel between my home and where they do the trials, if I would even qualify for one.

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