Stage IV

Sue King - May 11, 2010

My name is Sue King and I'm 62 years old. Here's my story:

At about the age of 35, my Irish/Scott heritage and the often severe sunburns I suffered as a child cautioned me to be vigilant about checking my skin for any hint of melanoma cancer. I armed myself with the accepted findings of early diagnosis - dark pigmented, irregularly shaped, spreading mole. So began my journey to outwit melanoma.

In 1986, I found a suspicious mole on my left shoulder blade and immediately had it removed. The pathology was normal. I was relieved and secure in the feeling that I was ready to be watchful for future melanoma lurking in dark, irregular, spreading moles. As the years progressed, I never let my guard down and continue to check my skin, never finding any more suspicious moles.

Then in 1999, at the age of 52, I noticed a perfectly round, grayish, mole about the size of a dime at the same spot where 13 years earlier I had that suspicious, pathology free mole removed. This slightly itchy, light colored mole looked innocuous compared to the disturbing photos of melanoma I had come to accept as warning signs. In contrast, this mole was not grotesquely dark pigmented, it was not irregular in form and it was not spreading. However, it was Stage III malignant melanoma with a Braslows thickness of greater than 4.0 mm and a Clark's level of 4 or greater.

I was incredulous. How unfair! I was armed with the knowledge of what melanoma looked like, but it had tricked me. This deception, I would learn, is melanoma's pattern. I suddenly realized that my melanoma adversary was more cunning and slyer than I anticipated. In planning my fight with this enemy, I would need to avail myself of all current information regarding this disease and commit my energy to defeating it. Battling melanoma, it became apparent, would not be a single battle, but ongoing guerilla warfare.

And so my war began. On my side I counted Baylor University Medical Center, unending prayers of friends from around the globe, the support of my family, especially my husband Jim (who never took no from me or melanoma). On melanoma's side, the ability to invade, resist treatment, lurk and ambush.

I never asked my doctors, "How long do I have?". I thought it unfair. Each life is different so they could not, with certainty, give me an answer. Besides, my research had made me painfully aware of my chances for long term survival, especially when Stage III melanoma turns into Stage IV. Once melanoma spreads, all bets are off

From 1999 to the present, I have engaged surgeries, interferon, radiation, a clinical trial investigating vaccine therapy, limited chemo, all measured by PET scans, CT scans, MRIs. Melanoma has laid dormant in me actually having staged me IV, not III, for 2 years. Its tumors have invaded my muscles and my spine, requiring emergency surgery to prevent it from paralyzing me. The treatments and surgeries had zapped my strength, left me hurting and scarred. At times, the fear and uncertainty have deprived me of hope The battle waged on and I was tiring of the onslaught. But, each day with medical caregivers to take care of me, prayers to support me, family and friends to cheer me, I managed to put one foot in front of the other. With the knowledge about melanoma I gleaned from the internet, cancer books and Lance Armstrong's story, my own journey brought me to May 2005.

Having tried 2 rounds of a limited chemo regimen, my PET scan indicated that my tumors had resolved dramatically. "Dramatic improvement of multiple metastases, which have completely resolved", the PET report read.

Unfortunately, melanoma returned. Both instances were subcutaneous and only required surgical removal. No treatment.

The next PET scan and the following three have indicated that there is no measurable disease to be found for the next year and a half.

In 2009, the PET indicated a recurrence in the dermis close to a lymph node which had been removed previously. The small tumor was removed with local anesthesia and required no therapy. My next PET will be July of 2010.

Despite the recurrences, this is a miracle for Stage IV. Those responsible have cared for me, prayed for me and loved me. You see, my battle against this melanoma opponent was not fought alone nor my good news only mine. I will continue to be vigilant because I know the power of my enemy's ability to ambush me. But, my strength is renewed and I'm encouraged by those around me who raise me up in their good thoughts and prayers.

I encourage all patients, caregivers, doctors and nurses never to give up. For me, it was darkest before the light. It can be that for others, too. Miracles can happen to all of us.

As for me, my journey to outwit melanoma continues, but, at this point, I'm ahead.

I'm Sue King and I'm a melanoma cancer warrior................. Sue

Eric Sizemore - May 8, 2010

In Feb 2007, I noticed an unusual looking mole that developed pretty quickly. I saw my Family Physician for a biopsy. A week later, I received a call from the nurse stating that the biopsy was negative.

In Spring 2008, I noticed that the mole had grown back and was looking a bit "uglier," but I had already had a biopsy so I thought it was ok. Toward the end of the summer a friend (who had melanoma before) saw the mole and stressed that it needed another biopsy. I saw my family doctor and she took another biopsy. I got the call a week later - it was Melanoma...Cancer.

So, the next step was to see a Skin Cancer Reconstructive Surgeon for the Wide Local Excision and Skin Graft, and an Oncology Surgeon for a Sentinel Node Biopsy to see if the cancer had spread.

On December 4^th, I had the SNB and the WLE with a Skin Graft and a week later I got the results...the Lymph Node contained Melanoma. No one can prepare you for that!

On December 23^rd, I had the LND and a week later I got the results that none of them contained any Melanoma. I am considered Stage 3C.

On December 30^th, I was admitted back to the hospital for infection. I was hospitalized for almost a week.

In February 2009, I began daily treatments of Interferon for the next 4 weeks. Then, I had chemo injections for 8 months until I discovered that my leg was inflamed with a few bumps. I showed them to the oncologist and they did a biopsy. The news again, the cancer had spread. I have skin and subcutaneous tumors. My tumors have multiplied so fast that I now have over 100 tumors.

The next phase of treatment was to try a new clinical trial that consisted of Abraxane, Avastin, and Carboplatin - weekly. After two months of treatment, they did scans and the news again was that the cancer has continued to progress. This treatment discontinued, they gave me a month's treatment of Temodar, which also did not stop the cancer from progressing.

I began a course of High Dose Interleukin2 in February 2010. I was able to tolerate 44 out of the 56 infusions.

My cancer has spread out of the leg into a lymph node in my pelvic area by the bladder. I just completed my 4^th week of Interleukin will be having scans the end of May to find out if I need to go out of state for experimental treatments.

I may have cancer, but cancer does not have me!

Please feel free to visit my Caring Bridge Page and Blog:

www.caringbridge.org/visit/ericsizemore

www.melanomasucks.blogspot.com

Heather Snyder - May 8, 2010

In July 2008, I was diagnosed with Stage IV Melanoma Cancer. After a year of tough chemo, my cancer has decided to make a comeback. I am SOOOO over cancer!

On July 8, 2008, the day my daughter turned 6 months old, I was diagnosed with Stage IV Melanoma. That day changed my whole life. I started a year long round of chemo called Interferon in August 2008. In January, I noticed lumps under my skin. By March, I had two more. Those were all taken off in March and all came back positive for Melanoma.

Obviously, the chemo that I had been on for the past 8 months was not working. My local oncologist admitted that he did not have the chemo that I needed. We immediately went to MD Anderson in Houston, TX. The best cancer treatment center in the nation. I was started on 6 rounds of very, very rough biochemo. I was hospitalized for a week while the chemo drugs were administered. I would come home for two weeks and then would head back to Houston to do it all over again.

After 6 rounds, two small tumors remained. I had surgery in September 2009 to remove one and surgery in December 2009 to remove the second.

On February 12, 2010, the doctor discovered that my cancer had returned. My oncologist at MD Anderson did not feel that they had the chemo I needed. He wanted me to find the trial with RO5. Luckily, I was able to get into a trial at Vanderbilt University in Nashville, TN. The RO5 has shrank the tumor that I feel from 2.8 cm to mm's. At this time, due to some pretty awful side effects, I have been taken off the RO5 for the time being. I am hopeing to continue the meds soon. To read the rest of my story, you can check out my blog at cancermommy.blogspot.com.

Through it all, my family has been my rock. My husband has stood beside me the whole time. My kids have given me hugs and kisses when I needed it the most. And, my parents and in-laws have helped with whatever we have needed.

I am not sure why God chose me to fight this battle. And I'll be honest, it sort of ticks me off! But, I was chosen and I can't change that. All I can do is fight my hardest to be here for my children. Not many people survive Stage IV Melanoma, but I am determined to be one that does!

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!!