Stage IV

Amy Busby

I have 2 great kids, 1 great husband, 1 great dog, 1 cute turtle, and 1 cranky hamster.

I was diagnosed with Stage 3a melanoma in 2003. I was a first year law student so the stress level was high! I found my new mole within days of its appearance and had it removed within a month.

It was a Clark's level 3 and .9 mm in depth. My sentinel node biobsy (SNB) had one positive node. I followed that with a lymph node dissection of the left groin and a year of interferon - well, almost. My liver threw in the towel at 7 months.

I had horrible side effects, many of which were permanent. But it must of worked since I had no evidence of disease (NED) for 6 years.

After a clear PET/CT in March 2009, I caught a recurrence. The cervical nodes on my left side were enlarged but not tender, no fever. US showed there were alot of them and very suspicious.

After a few weeks battling my insurance company, I finally went back to MD Anderson Cancer Center (MDACC). FNA confirmed melanoma. My recent scans show "innumerable" nodes and subcutaneous mets, pretty much everywhere. A few possible bone mets, as well.

I went from 6 years NED to covered in mets from femer to skull in 4 months. In August 2009, I started bio-chemotheraphy treatment. In mid-September my scans were stable! So, I've started another round of bio-chemotheraphy.

Visit my Care Page to follow my story - https://www.carepages.com/carepages/AmyBusby/patient

Cathy Bjorklund

I was diagnosed with a 3.9 melanoma on Sept 18, 2005.

In the summer of 2005, I accidentally cut the bottom of my toes on some metal gardening edging. That was when the true miracle happened. I had never noticed anything unusual between my toes prior to having cut them.

By September '05, when the 2 toes didn't heal, I went to my primary care doctor, who sent me to a podiatrist. Neither could diagnose the problem. The podiatrist suggested day surgery to see if something ''foreign'' had made its way into the open wound. To make a long story short, the biopsy came back showing that I had a 3.9 melanoma between my toes.

Less than 3 weeks after being diagnosed, an oncologist bone surgeon removed 2 of my toes.

Then, my cancer returned, and I had more removal between the 2 toes. When the new biopsy came in, it showed a small amount of melanoma remaining. So, I was back in for more surgery in February '07.

In March '07, I went to Johns Hopkins for a second opinion. The melanoma oncology department studied my case for 2 weeks and thought it best, since the melanoma returned aggressively, that I have an amputation from the knee down. My bone oncologist in Dallas disagreed. He removed half of my foot because he felt the surgery in February had a clean reading.

In April '07, I was on the gurney once again, to have half of my foot removed. By the GRACE OF GOD, I developed a blood clot minutes before surgery. I told my doctor that I believed in the power of prayer and that I did not think this surgery was meant to happen. He agreed and sent me to a hospital room to have a sonogram for the blood clot.

The following morning, the sonogram showed no blood clot! I checked out of the hospital, keeping half of my foot, agreeing to PET scans, MRIs, and CAT scans every 3 months.

It has been well over a year now, and each test has come back NED (No Evidence of Disease), and I praise God!!!

Jackie Doss

In February 2002, I was diagnosed with stage I melanoma. Because it was a thin melanoma, it wasn’t expected to return. But by January 2004, the melanoma had metastasized to my lymph nodes. Although 12 nodes were removed, it was only a matter of weeks before more tumors appeared in the same lymph basin. So the remaining lymph nodes were removed in May, followed by radiation.

Before I could find a suitable clinical trial for adjuvant therapy, I had progressed to stage IV in October 2004, with a large subcutaneous tumor in my hip muscle. I underwent 2 chemo trials which did not eradicate the tumor, so it was surgically removed in April 2005. Within 5 weeks, I was back in the hospital having several tumors removed from my small intestines.

So far, that story sounds pretty grim, right? Well, melanoma is a tricky disease. It behaves differently in different people. My story is 1 of the good ones. I started a vaccine trial shortly after my surgery and was able to enjoy 14 cancer-free months. For a stage IV melanoma patient, that was quite a gift, considering that the average survival time without recurrence is 7 months. I live with the knowledge that the cancer will return.

In June 2006, the melanoma did return to my small intestines. One large tumor was removed in August 2006. Because there is no approved adjuvant therapy for stage IV melanoma patients, there is no treatment for me at this time. While I’m enjoying my time off, I do get scanned regularly.

A few months ago, an MRI showed a spot on my brain, but subsequent tests contradicted that finding. As you can imagine, life is a roller coaster. I feel blessed to be here, but I’m always on the lookout for the next turn in the road. In the meantime, I have lost many friends to melanoma. It’s a constant reminder of a disease that doesn’t seem to give up.

So I won’t give up either. I won’t give up fighting. I won’t give up hope. I won’t give in to fear. I WILL do whatever I can to get the word out about melanoma prevention so that future generations don’t have to face this fear.

Ruth Oviatt

For about a year, I had noticed that a mole on my back had been acting weird. I had always heard about skin cancer, but I never really thought too much about my mole. I decided to mention the mole to my doctor. She and another doctor decided to remove the mole right away and send it in for tests. I still didn't think too much about it.

I'll never forget that particular day. I realized that I had missed a call from the doctor's office, and I also had a voicemail. I called my dad to see how I could get in touch with my doctor. Since I did not answer the doctor's call, she had called my dad with the results. She told him that my mole was in fact Melanoma.

My next step was to have a wide excision around the initial area of Melanoma to see if Melanoma was also located in the skin around the mole. During that surgery, I would also have a Sentinel Lymph Node Biopsy to see if the Melanoma had spread to my lymph nodes. The doctor who performed this surgery told me that they would run quick tests in the hospital on the sentinel lymph nodes that they removed to see if they could see Melanoma in any of them. He informed me that this test is not always accurate, but they still do it. They would also send the sentinel lymph nodes off for more accurate tests, and these would take about a week to get the results back.

The quick test showed that there was no Melanoma present in my sentinel lymph nodes. Everyone was very excited to hear this. I was very nauseous for about 3 days after surgery, and I was also sore. My Dad was my care-taker, and he always has been. Because of my nausea, I did not want to eat much of anything. This caused me to become very weak and even pass out a few times. My Dad helped me with the dirty work like changing my bandages. I stayed positive because I thought that surgery would be the end of my battle.

When my Dad got home from work on the 7th day since surgery, I just casually asked him if the doctors had called him. When I asked him, I could tell that something was wrong. He sat down with a concerned look on his face. My sentinel lymph nodes actually did have Melanoma in them, which meant that it had spread. Because it had spread, I would have to have another surgery and undergo chemotherapy.

I had many doctor appointments following this news. We had more than one opinion, but they were all the same. Since Melanoma was present in my sentinel lymph nodes under both arms, I would have to have all of my lymph nodes under both arms removed. The same doctor who did my first surgery also did my second. It took about 3 hours, and a few more to recover before being moved to my hospital room. After 3 days in the hospital, I was able to go back home.

My recovery was emotionally and physically hard. I remember waking up in the middle of the night after a whole week feeling the same as I did the first night I got home. My pain medication made me sick, and my improvements seemed very slow. I had tubes/drains and incisions under both arms. They had to cut through muscles and tissue to retrieve all of my lymph nodes. This left me very sore.

During my recovery, my dad and doctor got in touch with St. Jude Children's Research Hospital. I was referred there by my doctor, and I was accepted. After almost three weeks of recovery, still very sore, I headed to Memphis. Over the next five days, I met many people and had many scans/tests completed. Luckily, my PET scan did not show Melanoma in any other organs. I was also informed of the type of chemotherapy I would go through. I would be spending the next 5 weeks in Memphis for treatment.

My induction period consisted of chemo through my port 5 days a week. This was rough for me both physically and mentally. I have nothing but great things to say about St Jude Children's Research hospital, the nurses, Ronald McDonald House of Memphis, and the people who work there. I met so many sweet people whom I will never forget.

After 4 weeks of high dose chemo, I was able to go home. I would have to give myself a shot of chemo once a week for 48 weeks (standard treatment is 3 times per week, but I am part of a clinical trial). I made my first trip back to Memphis in August. Hair loss was minimal at first, but I began losing patches of hair around September. I have 3.5 months left. I am a strong believer that everything happens for a reason. I have accepted my diagnosis because I have faith in God, and I know and trust that he has his own special plan for me. I appreciate prayers above all else. I cannot even begin to describe how thankful I am of those who have been there for me through this tough battle.

Karen Stump

My name is Karen Stump and I was diagnosed with Stage IV melanoma on
May 22, 2006. I had felt a lump under my skin on my left cheek while putting on moisturizer. I visited my primary care doctor and he said it was just a cyst and referred me to a plastic surgeon, who also agreed it was a cyst. I made an appointment to have it removed. The plastic surgeon had difficulty getting it out because it was so deep. He sent it in for a biopsy, and it came back Stage IV melanoma. In less than two weeks I had surgery on my face to remove the tissue around the area. The doctor had to remove nerves and also a part of my lip. I had radiation to the area to kill any remaining cells. There was a spot they were watching below the eye which showed up "hot" on my PET scan.

In May of 2007 the spot started to grow and I went through 6 weeks of Interleukin II. That reduced the tumor, but then in November of 2007, I began to see double. After another MRI, it was determined that the melanoma had spread behind my left eye and was traveling by my optic nerve to the brain.

In December 2007, I had radiation to the area. It shrunk the tumor and at the last MRI, the radiologist said that he could barely see where it had been. I am having MRI's every three months now, and PET scans every six months.

I am 58 years olda nd teach dance classes (ballet, tap and jazz) and also have a small business. I feel so fortunate to still be living and try to enjoy every day to the fullest. I intend to keep fighting this horrible cancer with all my might! I feel also blessed to be going to a great cancer center that treats the whole person and is not afraid to try different treatments.

It is so important to have hope and a positive attitude!!