Lisa Butler

Stage IV metastatic amelanotic melanoma, unknown primary. My journey.

On July 4, 2010, I was sitting at the breakfast table with my family when I casually reached up to touch my neck and felt a lump there. The lump felt hard and round like a grape. I knew that it hadn't been there before, and it scared me right away.  That same day, I went to see my doctor and was put on a high dose of antibiotics. I continued on to see the ENT specialist, and went through a couple more rounds of antibiotics before being scheduled for surgery to have it removed on August 26, 2010.  On September 10, 2010 I found out that the tumor they removed from my neck was a melanoma tumor inside a lymph node. It was 3 cm.  I went to many different specialists to look for a primary site, and none was ever found. I was diagnosed as: Stage 3 Metastatic Melanoma, Unknown Primary.

I did 25 round of radiation to my neck area in November/December 2010.  I got through it ok, but it wasn't easy. Then in January of 2011 I started High Dose Interferon.  I did the 20 infusions in the first month, then shots three times a week for the months following.  It was very hard on my system.  I made it until October of 2011, and then I had to stop. I got high fevers every time I received a shot, my white cells would plummet, my blood pressure was low, I had lost a lot of weight, muscle tone, and I was just very weak.  In October I was admitted into a psychiatric hospital because I was having suicidal thoughts. I knew that suicide was a side effect of this treatment, so I didn't want to take any chances. I needed to get better!  I realized the treatment was pushing me too far, and I had to stop.

Over the next year I slowly recovered emotionally and physically.  By the end of 2012 I was feeling like myself again, maybe even a better version of me.  I had done a lot of work on myself, and I had a lot of peace in my life.  

This last Valentine's Day, February 14, 2013, I heard the words from my Oncologist that I had been dreading: "Lisa, we have found something."  There was a tumor in my brain.  I had just graduated to stage 4.  At that point, the tumor was only the size of a tick tack.  On March 7, 2013 I had Gamma Knife surgery.  It succeeded in killing the tumor, but it had grown a lot in that time, to the size of a bouncy ball. I had side effects like feeling really dizzy and confused, my face drooping on one side, and weakness in my left leg.  There was too much fluid building up in my brain from the tumor site.  On April 8, 2013 I had brain surgery to remove the tumor.  The surgery went really well.  When I woke up I felt so much better already - my face muscles improved and my left leg was working again!  

My doctor gave me a new diagnosis title. The tumor he removed was not a dark color like melanoma usually is, it was pink.  My new diagnosis was: Stage 4 Metastatic Amelanotic Melanoma, Unknown Primary.  I had to remain on high doses of steroids for another month.  All the steroids I had taken took a toll on me.  I gained 30 pounds, got a round belly and a round "moon face" and felt really sick and irritable.  It felt awesome to get off of those drugs, and see my body start to go back to normal.  In June I started a new therapy called Yervoy, which is an infusion every three weeks for four sessions. I finished it in August of 2013.  My side effects were not too bad.  I had some stomach pain, nausea, fatigue and headaches, but nothing serious happened to me. Now I'm having scans every 3 months, and waiting to see if the Yervoy helped me or not.  We are all just praying not to find any new metastases in my brain (or anywhere else).

I have learned that I can truly trust in God, and to draw closer to the people that love me the most.  I feel very blessed to be alive, and I'm trying my best to make the most of all the precious moments with my husband and my three young children. For all of us going through this, God bless us all and give us strength and peace.

Tue, 2014-01-21

Comments

rc.aulisi - (9/11/2014 - 10:26pm)

Hello,
My mom just had her first treatment of yervoy on 9/10. She had some nausea and headache, but I am hoping that all improves with her meds. Have you had your scans yet? I am hoping and praying she has a good response to yervoy. Her oncologist is very optimistic as he said he has had lots of patients with good outcomes. I hope you are Well and your next scans come back clean!