My story started 11 years ago. I went in for my yearly physical. He checked me all over and said everything looked good. I asked about a spot on my nose that did not look like any melanoma I have seen. It was skin color but it itched all the time. He took a biopsy and a week later called me to tell me it was melanoma in situ. I had it removed and was told they got it all, go live your life.
Three years later it was itching again but there was no visable sign. I went to my Dr., my derm Dr., and the plastic surgeon who repaired my nose. They all said nothing was wrong and sent me home. It finally started scabbing and not healing. They finally listened and did another biopsy. I then went to an oncologist at the University of Iowa who is also the head of the melanoma department. I had to have a flap surgery done. After it healed, I had radiation for 6 weeks. That was very hard because it was on my face and affected my mouth and I couldn’t eat.
The next spot was behind my knee. It was sitting on a blood vessel so they couldn’t remove it. I had more radiation and GMCSF injections. I had a little time before another spot showed up.
During that time, I tried to live a normal life and went back to playing tennis. I developed tennis elbow and had surgery to repair it. I then went back to tennis and twisted my ankle. I had to have surgery to repair tendons and ligaments.
The next spots to show up were in both lungs. That news really scared me the most. I was convinced my life was over. I would never see my two children get married. I had surgery to remove the spots and ippi immunotherapy. I was only able to have 2 of the 4 doses because they gave me colitis. I was in the hospital for 4 days getting over that one. And both children got married two months apart in 2014.
The next place it reared its ugly head was in my pancreas. I was sure this was the one! Now I’m thinking I will never be a grandma. We did a round of radiation and Keytruda. It seemed to work but again had to stop because of colitis. I am very happy to say that I am a grandma of an almost one year granddaughter and a 3 day old grandson.
Currently I have a spot on my chest, very high up, almost to my neck. You can see this one. I am in a trial of CMP-001 and Keytruda. I started in April and I go every three weeks. I’m having a lot of pain all over from this round.
All I can tell people is to keep a positive attitude and that prayer works. You also need to stand up for yourself and make them listen if you have a concern. I don’t think I would have had to go through all of this if they would have listened to me when I said it was back on my nose.
My best to everyone fighting this monster.