happydad's Journey with Skin Cancer - Melanoma
- 1 Oh No Icon Oh No
- 2 Procedure or Surgery Icon Procedure or Surgery
- 3 Drug or Chemo Therapy Icon Drug or Chemo Therapy
- 4 Celebration Icon Celebration
- 5 Other Care Icon Other Care
- 6 Oh No Icon Oh No
- 7 Procedure or Surgery Icon Procedure or Surgery
- 8 Procedure or Surgery Icon Procedure or Surgery
- 9 Loss Icon Loss
- 10 Radiation Icon Radiation
- 11 Drug or Chemo Therapy Icon Drug or Chemo Therapy
- 12 Other Care Icon Other Care
- 13 Other Care Icon Other Care
- 14 Radiation Icon Radiation
- 15 Other Care Icon Other Care
- 16 Decision Point Icon Decision Point
Patient: Skin Cancer - Melanoma
Patient Info: Currently in active treatment (initial surgery, receiving chemo rounds/radiation), Diagnosed: about 9 years ago, Male, Age: 66, Stage IV, BRAF mutation positive: No, c-kit positive: Don't Know
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Experience Icon Descriptions
Procedure: Drag this icon to show a procedure.
Radiation: Drag this icon to show a specific radiation therapy experience.
Drug Therapy: Drag this icon to show a specific drug therapy experience.
Clinical Trial: Drag this icon to show a clinical trial experience.
Side Effect: Drag this icon to show experience with a specific side effect.
Oh No: Drag this icon to show when something bad happened (e.g., cancer’s back, lost job).
Celebration: Drag this icon to show when something good happened (e.g., last treatment, hair is back).
Loss: Drag this icon to show a time of loss (e.g., lost hair, lost loved one).
Decision Point: Drag this icon to show a time when you had to make a tough decision.
Other Care: Draft this icon to show a time when you needed other care (e.g., hospice, psychotherapy).
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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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
External radiation
Radiation
While in the hospital for seizure, started a ten-day full brain radiation treatment regimen.
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!).
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.