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Stage IV

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Mark Rine -- March 2014

 

 

My story begins 2 years ago. There I was standing in my bathroom with my shirt off, and my wife is bugging me about an odd-looking mole on my back. Of course, I make multiple efforts over many months to disregard the conversation in attempts to dodge a visit to the dermatologist, but she wasn't having anything to do with my excuses. I finally told my wife that if it meant that much to her, I would make the appointment. The real reason I didn't want to go is because I was afraid. In 2007 I watched my cousin battle melanoma, and in only a few short months she was gone. Stephanie was the only thing I could think about when the word melanoma came up.

 

In August of 2012 I walked into Central Ohio Dermatology. Dr. Holsinger listened to my whole story about how I thought my wife was over-reacting and that I was sure it was a lot to do about nothing. Dr. Holsinger asked me to remove my shirt, and I quickly saw his face go from humored listener to concerned physician. Dr. Holsinger saw the mole she was concerned with, but it was three other spots that had his attention. We removed all four spots and sent them off to biopsy. It wasn't very long after the initial visit I received what would turn out to be one of many "please come see us at the office" phone calls. My deepest fears had become realities, I had melanoma.

 

In the fall of 2012, I had surgery to remove cancerous sections on my back and right flank. The cancer did not stay in those areas as we had hoped though. Right before Christmas 2012, I had full lymph node removal performed under my right arm. The surgeries were deemed a success, and now we were moving on to chemical therapies. I started high-dose Interferon as soon as my body was healed from the surgeries. I stayed on Interferon until the summer of 2013.

 

In July 2013 I spent 9 days in the hospital with complications to all the medicines and a severely infected gallbladder. During my stay I had lost most of the function to my left leg, an odd surprise to the doctors who had no idea why a gallbladder would cause issues to a lower extremity. Doctors ordered a scans to be performed, and I received another "come see us" phone call. The scans showed a tumor in my spine that was growing around the nerves that serve my lower back and left leg.

 

At this point, nothing the doctors said to me came at any surprise. By now I was so numb to bad news, it just went in one ear and positive reassurance came out the other. I decided well before this last dose of bad news that cancer can't hurt me unless I give it the power and pleasure to do so.

 

My therapies had to change at this point. Doctors decided that the tumor was not operable, and Interferon was not effective in the spinal column. I started taking Temodar, a drug initially designed for brain tumors but proven effective against melanoma. I also received an extremely high dose of radiation, but that proved to be very ineffective.

 

So here I am today in the same position I started, Stage IVa melanoma. I don't dwell on why; I dwell on what now? God did not give me melanoma, but He did allow me to have it. He knew I could handle the responsibilities that were going to come in the package deal. My life was very fulfilling prior to cancer, but cancer has given my life a degree of fulfillment that I never thought possible. Cancer is not a death sentence. It is only as powerful as you allow it to be. I personally have taken more from cancer than it will ever take from me, and that, my friends, is a win.

 

 

Kristin Arnone -- September 2013

 

Hello, fellow melanoma warriors!  My name is Kristin Arnone, and I was diagnosed with melanoma on January 5, 2010, when I was 40 years old.  Prior to my diagnosis I had no idea of how aggressive and horrible melanoma is.  I thought, "Skin cancer - that's no big deal!"  Boy - was I WRONG!!!  However, I also learned and wanted to share with all of you that there is HOPE, no matter how bad it seems.  ALL things truly are possible with God on your side ... and He is - always!

 

My husband, Steve, first noticed a strange mole in the center of my back in October 2009.  He told me that I needed to have it checked, but I was stubborn and didn't listen to him.  I was really scared and didn't want to hear any bad news, so I put it off for a couple of months.  When the mole began puffing up, I knew that I had to see a doctor!  I went to see my primary care doctor at the end of December.  He was very concerned and shaved off the mole to send for a biopsy.  As I had feared, the diagnosis was melanoma.

 

My doctor sent me to see a plastic surgeon to have the mole and margins removed on January 18, 2010.  Another surgeon removed two lymph nodes under my left arm, as they had determined that to be the location the cancer would spread to first if it was on the move.  After the surgery, the doctors staged my melanoma as Stage II or III.  They were unsure of the actual size of the tumor as my primary care doctor had shaved it off and that made it hard to know the size it was originally. (Word of advice here - if you have concerns about your skin, please see a dermatologist!!!  They know the best methods when it comes to skin cancer and taking samples for biopsies.)  Testing showed that my lymph nodes and margins were clear, which was a relief. I also had a PET/CT scan that showed no cancer in my body.  We were confident that they had gotten all of the melanoma.  However, since they were unsure of the actual stage, the oncologist recommended that I do a 12-month regimen of Interferon-Alpha just to be on the safe side.  

 

I began Interferon-Alpha at the beginning of March 2010.  For the first month, I went 5 days a week for a 3-hour infusion.  After that, I went 3 days a week for a shot.  I had two young children, ages 9 and 6, at the time.  It was awful, and I would have never made it without the help of my wonderful parents, husband, and many great friends.  The only thing I can compare the experience to is having mono AND a low-level stomach flu simultaneously, for almost an entire year!

 

At the beginning of January 2011, I went to my dermatologist for a check-up. Things had been going well.  I had been continuing on Interferon-Alpha and seeing my oncologist regularly, etc.  As my dermatologist was examining my skin, he noticed a small, bluish-gray spot under my left arm.  It looked like a small bruise under the skin.  He wasn't overly concerned but decided to biopsy it just to be safe.  About 2 weeks later, he asked me to come in so that he could "check my scar."  I went to his office, completely confident that all was fine, and he told me that the biopsy showed melanoma.  You could have knocked me over with a feather - literally.  I was completely shocked and in a daze for many days to come. My husband, Steve, began researching Stage IV melanoma online, which was a huge mistake.  The outlook was horrible, and we were filled with complete and utter despair.  

 

Once we realized that the melanoma was indeed NOT gone, I was scheduled for another PET/CT scan.  It showed that the melanoma had spread to my liver, spleen, and the lymph nodes under both arms.  My local oncologist recommended that I see a melanoma specialist at the IU Med Center in Indianapolis the following day.  We went to the appointment with that doctor, and he didn't give me much hope.  He said that he thought I should undergo Interleukin-2 treatments, but that it only had a 17% chance or so of curing me.  My husband, my mom, and I walked out of his office feeling as if I had just been handed a death sentence.  I was completely numb, and I had no confidence that the IU doctor could help me.  

 

Praise be to God, my mom went to one of her club meetings a day or so later and asked her friends to pray for me.  A lady that she didn't know very well came up to her and told her that her son, Tom, had been diagnosed with Stage IV melanoma several years before.  The melanoma had spread throughout Tom's entire body.  It was even in his brain by the time he was diagnosed.  His local oncologist basically told him to get his affairs in order and prepare to die because there was nothing that could be done for him.  Tom was only 38 years old and had an infant son at the time, so he decided to find someone to help him fight this dreaded disease!  He chose to go to Mayo Clinic first. They basically told him the same thing that his local doctor had said.  So, Tom went to MD Anderson in Houston.  They had a couple of ideas of treatments that they could try, but they were sure that it would only buy Tom a few extra months of life.  Tom didn't give up, though, and he found Dr. Jon Richards in Park Ridge, Illinois.  Dr. Richards said that Tom was too young to just give up and die.  Dr. Richards said he thought that Tom should fight it and that he would do everything that he could possibly do to help him. Tom underwent Interleukin-2 treatments along with another experimental treatment that was being tested at the time.  I am happy to say that Tom is cancer-free to this very day.  He has been able to watch his son grow up and graduate from high school, and he and his wife had another son a few years after he won his battle.  Tom's mom gave his phone number to my mom, and I called him later that same day.

 

Tom shared his story with me and encouraged me to contact Dr. Richards.  I did just that and had an appointment scheduled with him for a few days later. My parents, husband, and I made the trip to the Chicago area with a lot of hope in our hearts, after hearing of Tom's miraculous recovery!  The first thing Dr. Richards did when he saw me was to wrap me in the most wonderful, warm, powerful hug I had ever had!!! He told me that he was certain that God would heal me and that he would be the vessel through which it would be accomplished.  Needless to say, I knew at that very moment that Dr. Richards would accompany me in my fight for my life!!!  He encouraged me to think about it at least overnight, but my husband, Steve, and I had chosen and we didn't need to think any longer.  Steve asked him when we could start, and Dr. Richards said that I could begin the following Monday, which was 4 days away.  

 

Steve went to work the next day and told his boss the specifics of my treatment plan.  His boss (a wonderful man) told Steve not to worry about his job.  He said that Steve could take all of the time he needed to go to the four separate week-long treatments with me.  And he told Steve that one of his co-workers, Dave, had survived Stage IV melanoma several years earlier.  Steve talked to Dave and found out that he had also undergone Interleukin-2 treatments.  Dave's melanoma had spread to several areas in his body, even into his bones!  Miraculously, Dave was now cancer-free and doing very well.  

 

I started my IL-2 treatments at the beginning of March 2011.  My parents moved into our house to take care of our kids while Steve went with me for the four separate week-long treatment sessions at Advocate Lutheran General Hospital in Park Ridge, Illinois.  The oncology floor's staff at this hospital was second to none - they were awesome!  While I don't remember much of the treatments, what I do remember was absolutely horrible.  I am not going to lie - it was beyond awful.  It was worse than I could have ever imagined, truly. What got me through it was that I had my kids' photos sitting directly in front of me, where I could see them very plainly and could look at them when I felt like giving up.  I also had the following Bible verse posted on a large piece of paper on my wall: "I can do all things through Christ, who strengthens me." - Philippians 4:13.  That verse became my mantra.  I repeated it over and over and over again to myself, and it got me through!  


I finished my IL-2 treatments on May 15, 2011.  Since then, my scans and tests have shown nothing but improvement.  I had a bit of a setback this past April.  My PET scan was clear, but my CT scan showed that some of the spots on my liver were larger...???  I had an MRI at the beginning of May and then another at the beginning of this past August, and there was no change in those 3 months.  Dr. Richards said that he is sure that the spots are dead cells or pigmentation.  While I am full of hope and feel like I have beaten this thing, I cannot lie.  It still is in the back of my mind, always.  I still get physically ill when I have to go for another scan and am waiting for results.  Once you have heard the words, "You have cancer," I don't think you are ever quite the same.  And, you NEVER take life for granted from then on, either!  I have to say that I now do even the most mundane chores with perfect joy - I am just so grateful to be here and to be ALIVE and able to do them!!!   All of the glory belongs to GOD.

 

 

 

Lisa Butler -- September 2013

 

 

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.  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 27, 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 3cm. I went to many different specialists to look for a primary site, and none was ever found.  I was diagnosed as Stage III metastatic melanoma, unknown primary.

 

I did 25 rounds of radiation to my neck area in November/December 2010.  I got through it okay, but it wasn't easy.  Then in January 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 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 lost my hair, I had lost a lot of weight and 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 IV. 

 

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 IV 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 May I started a new therapy called Yervoy, which is an infusion every 3 weeks for four sessions.  I finished it in August, and I'm just still recovering from it.  My side effects were not too bad.  I had 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 may repeat the Yervoy treatment and get four more infusions this coming fall. That's the only plan I know so far.

 

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.

 

Ron Broomhead -- September 2013

 

 

My name is Ron Broomhead. I had Stage II-III in August 2007. They took a 6" round and 2.5" deep resection out of the lower part of my lower right back. I currently have Stage IV melanoma.

 

It was discovered by accident in August 2012 when I went to the ER with chest pains. The doctor took a CT scan and found two small spots in my right lung. He then sent me to the pulmonary doctor, who ordered a PET scan and then referred me to the oncologist who told me I had Stage IV melanoma. I had four spots on my right lung and another one under the skin between my right are and right rib cage. I had surgery to remove the one between my skin and rib cage. At the same time they tried to get the ones in my right lung but were only able to get the two in the middle lobe. There are two more in the upper lobe that they were unable to get due to too many complications (lungs deflating, infection, and others). Due to the infection and other complications, I spent 7 days in ICU and 13 more days in the step-down unit before being released. They tried to do the surgery robotically but had to cut me open due to complications. They cut nerves, cartilage, and anything in their way; they also spread my ribs. With all this done, they tell me that it would take 12 to 18 months for me to heal.

 

Since then I have been doing okay, but I'm still dealing with a lot of pain. They have me working with the pain management group at the hospital, and my lungs are working at 60% capacity, so the heat and humidity have not been good to me. (Today I have to miss my daughter's first senior soccer game due to the high heat and humidity.) The first round of follow-up visits went well. The two spots in the upper right lung were the same size, so the doctors decided to wait another 3 months to give me more time to heal.

 

As the 6-month mark came around, the doctor ordered a PET scan, but it was denied by the insurance company (Aetna), so they did CT scans of the chest, abdomen, and throat, and an MRI of the brain was scheduled for a week later. They found a tumor in the throat scan that was actually at the base of my brain, so we had to get the MRI moved up and they confirmed the tumor. After seeing my oncologist and the radiation oncologist, we all agreed to do cyberknife to the brain tumor. We all felt that was the most serious at this point to take care of. In about 7 to 8 weeks, once the radiation is washed out of my system, they will start me on a new clinical trial of chemotherapy that they are telling me they are getting very good results.

 

 

John White -- June 2013

 

My name is John White. I'm 58 years old. For about a year and a half I had a growth on my chest. My family tried to get me to go to the doctor but I just refused, as I felt I could deal with it myself. After all, I'm a guy, I can handle it. Well, inside a year it had grown to the size of a tennis ball. I still felt pretty good and had my otherwise good health. Then this growth started to hurt and I began experiencing sharp pains throughout the day. Many times, I could block them out as I do a lot of meditation, so there was not much pain on most days. 

 

I finally decided to go to my doctor, who sent me to outpatient services to have it removed. I'll never forget the expression on that doctor's face; I could tell it was the largest thing he had ever seen. However, he refused to remove it, even though I tried to talk him into it. He then sent me to a surgeon, who then sent me out for every test in the book: MRI, CT scan, PET scan, biopsy. Lucky for me, everything came back clean except the biopsy, which showed melanoma. I remember that call well. It was such a shock to me. 

 

After a day I got back to my positive self and said, "It's no big deal. I'm clean. Let's get rid of this thing." So we scheduled surgery to get the growth removed. After a few hours in the operating room and a week in the hospital, I was out and clean. I remember talking to the oncologist, and he was talking about some medicines, but I asked, "Why? I'm clean. No need to sign up until the operation." My body is drug free; I do not even take aspirin. So I declined. This was back in October 2012.

 

It wasn't until January 2013 that the lump came back, growing bigger and larger than the first one. I was very disappointed! Oh well. Back to the doctor, and yes, he wanted to cut it out again. I had to go back to do all the tests and another operation and skin graft. This time, at least, I spent only 1 day in the hospital.

 

The big difference this time was that a few months later when I saw the oncologist, he then told me very quickly I now had Stage IV melanoma, and there are no cures.  He gave me some options, the largest being if I had the BRAF. Which, guess what, I do not, so I started my first treatment of Ipilimumab in mid-May. 

 

I am very fortunate that I have a lot of people pulling for me. The toughest thing for me is helping to keep my wife strong. 

 

I would say, if you think you have something strange going on with your body, get to the doctor. Get it checked out as early as you can! This is a very dangerous cancer and not something to mess with. If caught early it can be very curable, but if you wait too long, then it can be a tough battle.

 

As for me, I'm strong and tough. I will beat this cancer. I'm staying very positive with the treatments I am undergoing.  I shall keep you all posted. 

 

Thank you, and always wear your sunscreen!

 

 

Ken Fraser -- March 2013

Hello, my name is Ken Fraser.  I am currently 29 years old. I was originally diagnosed with Stage III melanoma back in 2011. I had a mole come up on the left side of my face and another tiny spot on my neck. I had surgery to remove these, along with a lymphoid, and radiation afterward to get rid of it. I had thought it was gone, until I discovered some spots on my scalp this past November. I had two different doctors look at them before the third doctor finally ordered a biopsy.

 

I was told on Feb. 19, it is Stage IV melanoma. It's great to read everybody's story for inspiration. I have been trying to be positive about this whole thing. I am currently getting a ton of support from my family and friends, and it seems everyone has some suggestions. It's tough to filter everything out and make a decision.

 

 

Stephanie Bowen - March 2013

Two years ago, I was waiting for my fifth cycle of biochemotherapy to begin. I was so very weak and skinny and just plain sad looking!  My original submission to AIM was around January 2011. I was not sure my story would have a happy ending or a sad story of another who went down with Stage IV melanoma. 

 

My name is Stephanie Bowen, and I am now 43 years old, and I am a Stage IV melanoma SURVIVOR! I am also NED. :)  

 

The biggest message I want to share with melanoma patients is the need for us to go to a specialist. When I was originally being diagnosed I was with doctors who considered melanoma a death sentence. A surgeon who was attempting to get a sample of the tumor under my left arm almost killed me by opening me up and thinking he could take the tumor out. I was left with a JP drain in my arm, stuck right in the tumor. The oncologist he sent me to looked at me like I needed to plan my funeral.

 

I was immensely blessed to have friends who knew someone who knew someone on the board of a melanoma foundation, Debra Black. This woman is friends with Dr. Donald Morton at the John Wayne Cancer Center, and with a referral and life-saving phone calls, I was able to see him on December 22, 2010. He sent me to Dr. Hamid at the Angeles Clinic where my life was saved. I was told I would LIVE. 

 

If you are facing the worst news ever, the scariest moment of your life, and with a diagnosis of melanoma, Stage IV ... get to a SPECIALIST. AIM can help. Also, contact the melanoma community online; there are so many of us out here. It will be a hard road, but there are those of us who have traveled it and know that you can too! 

 

There is HOPE!

 

Deborah Shemesh - October 2012

I was 26 when I was diagnosed with Stage III. By the time I was 32, it was Stage IV.  Last rites were given several times.  I am now 58;  32 years since diagnosis, 12 years of spontaneous remission.

I encourage others to be inspired through finding success stories.  I hope you use my story to inspire others.  Sharing brings me great happiness, and I know that in order to heal, happiness is a key ingredient.  Happiness heals; let me inspire you today.  

 

Chris Verzwyvelt - August 2012

My name is Chris Verzwyvelt. I am a Stage IV melanoma survivor. I was diagnosed in 2007 with a large mole behind my left ear. My dermatologist did a biopsy on it that confirmed it was melanoma. She recommended MD Anderson and pulled some strings to get me there as quick as possible. I went there and had the mole removed as well as several lymph nodes on the left side of my neck. I counted my blessings and thanked God that it was caught early and went about my life. Failing to educate myself enough about this disease almost killed me. I had no idea that skin cancer could go all over your body like it did 4 years later to me.

You have to understand I was 33 years old, 6'2", and 200 pounds. I was always a big, strong, healthy guy, and I worked as a pipeline surveyor. I never wore sunblock; I always worked outside. In June 2011 I started having nosebleeds. They were minor at first, and I just attributed it to the heat and working out in the Louisiana pollen. They gradually got worse and worse. I started having headaches also. They were like the nosebleeds, minor at first, but after a few weeks I could take three B.C. powders and it was like taking nothing. I had just started working for a new company and did not want to ask my boss to take off work to go to the doctor for a nosebleed. So I just dealt with it until one night I woke up with the worst head pain I've ever felt in my life. I couldn't open my right eye, and it felt weird. I got my wife to take me to the ER. A CT scan confirmed that I had a large mass in my ethmoid and sphenoid sinus cavities, behind and a little below my right eye. I also had a mass that was 6 cm in my right lung. The next day, I started having lumps appear all over my head, my neck, shoulders, and abdomen. Biopsies confirmed that it was all melanoma. It was consuming me and spreading very, very fast in my subcutaneous tissue.

 

I was finally sent to M.D. Anderson and started biochemo. I was on a morphine pump for pain as well as methadone. At first, they were concerned to give biochemo to me because the sinus tumor was millimeters from my brain, and they didn't want it to swell up when treatment started. I started treatment, however, because there were really no alternatives for melanoma once it started attacking the body so aggressively. My first round of treatments I stayed at M.D. Anderson for 3 weeks. I remember missing my dogs terribly, and I hated watching my wife cry herself to sleep every night. That was the worst part of it for me. The side effects of the IL-2 really don't start setting in until your second treatment, however. I swelled up like a balloon and turned red as an apple. All my skin started peeling off, and I looked like I had a bad sunburn. The response was almost immediate. After the first treatment, I did not need the morphine pump anymore, and I could open my eye again. The lights at the hospital hurt my eye though, so I would bring a little lamp from home and put it in the room. I actually got a lot of compliments from the staff on how homey such a simple little thing as a lamp made my hospital room.

 

I could not eat at all while I was in the hospital. My wife would a lot of times have to go out of the room to eat because just smelling food made me sick to my stomach. Just seeing commercials on TV for Chiles or Taco Bell would make me sick. I always just assumed that people going through cancer treatments were just not hungry. That's not the case though; I was starving. It's like I could feel every cell in my body just screaming for some nutrition, but I could not eat.

 

I would stay at the hospital for a week, then come home for 2-3 weeks, and then back again for another round of treatments. Right around the middle of this process is when the neuropathy started really setting in. I could not feel my feet or even wiggle my toes. I was severely anemic and weak from my bone marrow getting slammed by the IL-2/chemo combination. I was so weak one day that I got up off the couch and immediately passed out and smacked my face on the floor hard and scared my wife to death. She took me to the ER where I got seven stitches in my chin.

This was about the time that the depression really started setting in. Like I said, I was always a big, strong guy, and now all of a sudden I had the body of an old man. I had to get up like three times a night to go to the bathroom. I was so weak, and right about the time I would start to get my appetite back and start to feel a little better, it would be time to go back to M.D. Anderson for another round of biochemo. My wife had to drive all the time because I was on so much medicine and could not feel my feet. Most mornings I would just sit in the living room and cry.

 

Finally in November of last year, after 5 months of biochemo, I finished my last treatment. The doctors said that taking all six rounds is rare because most people get so sick, or get dementia, or all kinds of other crazy side effects. It had really done a number on me though. I weighed 150 lbs. My hair was all gone; I was so skinny and pale and weak. IL-2 gives you diarrhea while you are taking it, then when you get home and stop taking it, you get constipated. IL-2 also kills the good bacteria in your digestive tract, so even if I could eat something, my bowels would be in pain. I could not walk that well, I could not feel my feet, and I had tinnitus from hearing loss caused by the cancer drugs I was on. The tumor in my sinus had dried up and pulled away from the walls of my sinus cavity. The tumor in my lung was just a spot that was almost nonexistent. And all the subcutaneous tumors I had were long gone.

 

A brain MRI confirmed that I had a small tumor about the size of a pencil eraser that had metastasized to my right frontal lobe. Biochemo does not treat the brain because it cannot pass the blood brain barrier. It treated everything except my brain. So in February, I had the gamma knife done to me where they give high doses of radiation to a single area of the brain. It's a very painless procedure, but it takes time for the tumor to go away. My last scan showed it getting smaller and smaller, so it was effective. I also had endoscopic surgery to remove the dead tumor in my sinus. I now basically have a hole behind my right eye where that tumor destroyed nerves and bones and tissue. It always throbs and hurts. My leg bones still ache and have shooting pains. I still have neuropathy, but it is improving and I am getting stronger every day. The biggest challenge for me was and still is depression. I think that anyone young having to go through all this would feel the same way.

Last year at this time they were telling me to make out a will while I was still alive. I could see it in my family's eyes whenever they visited me that they were preparing themselves for my dying. I was in a very dire situation with a very hopeless diagnosis. But I am still alive. Despite all the bad things that the biochemo did and is still doing to my body, it healed me of this horrible disease that almost killed me. I thank God for my family and my wife, who I could have never gotten better without. The will to live is more important than any medicine that the doctor can ever give you. Remember that fellow melanoma warriors. This disease may try to take your body, but it can never take your spirit. No matter what the doctors say, no matter what your family or friends say, never lose heart. I love you all. God Bless.

 

Ron Whelchel - June 2012

My journey begins in February 2012 when I noticed a growth in my neck area.  It started small, then grew very big.  I went to my doctor who referred me to MD Anderson in Houston.  My doctor did all the legwork to help me get seen in a timely matter.  For that, I will be forever grateful.

Every test was performed that one can think of.  A biopsy confirmed it was melanoma.  During a visit with my oncologist, she found another growth on my side.  A biopsy confirmed it, too, was melanoma.

Not knowing the magnitude of my situation, I asked her if it was treatable and how long I had.  She said I may live a year.  I got sick to my stomach, weak, and almost passed out.  She said I had Stage IV melanoma.

I underwent a 9-hour surgery March 5th and spent 5 days in the hospital.  Upon discharge, I have experienced every emotion there is.  Back to the surgery, a radical dissection of my neck was performed.  They took my right peck muscle and converted it to being my new neck muscle.  The tumor removed was over a pound in weight.  The tumor on my side was attached to my right soft mass area near rib cage.  It was golf ball sized and removed.  In addition, 57 lymph nodes were removed from the L1-5 areas. My jugular vein was also removed. The amazing thing is all 57 lymph nodes were clear of melanoma.  The margins were free at the other tumor site.

Since the surgery, I have been reading everything about this stage.  Very depressing.  I have had five radiation treatments to my neck.  My radiation doctor told me to quit reading that stuff.  I have stopped.

One thing I will recommend anyone to do is get closer to God.  I have had many people praying for me.  I myself have changed in this way. I have repeated two articles from the bible and pray and repeat them every night and day.  They are:

"affliction shall not arise twice"

"growth and tumors are not allowed in this body.  They are a thing of the past for I am delivered from the authority of darkness."

Well, since surgery, my oncologist is not the bearer of bad news.  She said on my first visit post op, maybe we got it.  "Remember 57 lymph nodes clear and margins free." A light ray of hope.

Well, it is now June 1st.  CT scans were completed this week of pelvis, chest, lungs, head, and neck.  Everything came back clean and NED ...  "no evidence of disease." That is my new nickname with my oncologist, NED.  I told her it was going to remain that way.  No further treatments are scheduled.  I will be closely monitored every 3 months.

I know it is early in the process, but I am a firm believer in Christ Healing and prayers being answered.  My head & neck surgeon saved my life.  I am a changed person forever.  I live for today because tomorrow is not guaranteed.

I am another person with an unknown primary site.  Been in the sun, tanning beds a few times.

Don't give up.  I fight it every day.  I treat it as the devil.  Don't let it win.

I will keep everyone informed of my "unchanged" status in the upcoming months and years.

By the way, one is considered "disabled" with Social Security with Stage IV melanoma.  Got an answer in 4 days.  The heck with that.  I am going back to work.  I will never lose this status.

God bless everyone.

 

October 2012  update: 8 months and a few days since I was told I may have a year to live. My quarterly scans are in.

 

"No Evidence of Disease."

 

Miracles continue to happen. Never give up.

 

 

 

Gary Ham - May 2012

My name is Audrey Ham. My husband’s journey started in January 2009. He had a nodule on his left shoulder, and he kept picking at it and making it bleed so I told him to go have it checked out. The doctor took it out and said she didn’t get it all, and she threw it in the trash. She told him it was nothing to worry about.

 

The next year went by, and a black spot appeared where the nodule had been. So we went back to the same doctor, and she said she was going to send him to a specialist. We went to another doctor who cut it out even deeper. A week later she called and told us it was melanoma.

 

In April 2010, he had surgery to remove it. They took a lymph node out of his neck and two from under his armpit, and there was no cancer. They went all the way down to the muscle on his shoulder. The surgeon said he got all of it. In June 2010, the doctor called and said they wanted him to see an oncologist. My heart just sunk! The cancer doctor had him put a port in and started him on interferon. But he only took four treatments because it made him sooo sick.

 

Move ahead to 2011. Everything had been okay until September 2011. His iron was low, so he started having iron infusions; then later he started losing blood. They did CAT scans, and finally in January they did a CAT scan of his chest and pelvic area and abdomen and found three spots on his small bowel. Another surgery found it came back melanoma. What a horrible day! The surgeon said there was none anywhere else, so his cancer doctor sent us to Barnes Cancer Center in St. Louis. His cancer doctor and the cancer specialist said there was nothing to treat as of now. They have a treatment ready for him when or if it comes back.

 

He is retired now, and we are enjoying every day and trusting God to get us through this!!!

 

Susan Sorenson - February 2012

I am a survivor of Stage IV metastatic melanoma.

 

I was diagnosed with Stage III, Clark's level 5, Breslow thickness 4 mm malignant melanoma in November 2003. I had a small spot by my left eyebrow that appeared like a blackhead. To touch, it felt like a very small BB under the skin. I went to have it removed because it was ugly, not because I suspected cancer. I went to a dermatologist that specializes in skin cancer. He refused to remove it as he said it was benign. He said, due to the location, he would not recommend removing it because it would cause a significant scar.


It was only because of the location, my vanity, and my husband's concern that I pursued on and went to a plastic surgeon for a second opinion. The plastic surgeon said it looked suspicious and agreed to remove it and send it to be biopsied. A few days later, I received a positive result for melanoma. That phone call from the doctor will forever echo in my memory. He referred me to a local oncologist and recommended I make an appointment at Moffit in Tampa, FL.


The oncologist believes this was not a primary site due to the depth of the tumor. The primary site was never found. I had two more surgeries to clear the margins. I had a sentinel lymph node assessment. My lymph nodes in my neck were removed and  were clear. I completed a year of interferon therapy, which was difficult but medically I fared well. It was 1 month of daily IVs and 11 months of giving myself injections three times per week. I was not able to work during the first month but was able to work for the last 11 months. I had follow up PET scans and blood work every 3 months and then moved to every 6 months after 2 years. I was cancer free (NED- no evidence of disease) for almost 5 years, until July 2008.


In July 2008, a routine PET scan identified a spot on my liver. Part of my liver and all of my gallbladder were removed. A single 4x3-cm mass was present next to the gallbladder. It was positive for metastatic melanoma. An ultrasound was completed, and there was a questionable lesion as well on the right lobe of the liver. It was recommended to watch this as it did not appear to be hot on the PET or CT scan. Two opinions, one at Tampa General Hospital and the other at Moffit, said there was no recommended treatment since it is Stage lV NED. My local oncologist agreed. This was bittersweet news, but overall, I was very thankful for this as I didn't want to begin putting poisons back in my body.


I began a quest to build my immune system and to to cleanse my body with a diet free of white flour, sugar, meats, and processed foods. I strive to eat a high-alkaline diet rich in raw foods. The questionable lesion that was found on the right lobe of my liver is completely gone. PET scan and CT scan show it is no longer there. The doctor can't explain.

I had PET scans, physicals, and blood work completed every 3 months. Now I am on the 6-month plan until I reach 4 years (this July); then I bump up to the 1-year plan. I exercise daily and keep a positive attitude. I never forget that God is in control, He is the ultimate healer, and I am thankful daily for his grace. I am ever so grateful for my husband, children, family, and friends for their endless support and encouragment.

 

Each day is a gift; live in the present and embrace each moment. We can beat this, believe!!!

Sue Sorenson

 

Jeff Berg - January 2012

My name is Jeff, and I'm a very young 62 (as of Jan. 22, 2012). In November of 2008, I was having terrible night sweats and noticed a lump under my armpit. Turns out it was Stage IV melanoma that had spread to my lymph node and brain. I had brain surgery on Dec. 18, 2008.


Then I did 8 months of oral chemo (not bad at all, just fatigue) and was cancer free for 3 years until last week when they found a tumor on my bladder, which they removed thru a catheter. Turns out it is pre-Stage I bladder cancer.  I have to go in for six weekly treatments of immunology through a catheter (that's through the penis), then get checked every 3 months for the next 2 years. I'm 6 feet tall and about 195 lbs and in great shape. Just happy it wasn't the melanoma coming back.

 

Remember, no matter how bad the prognosis, there's always someone who beats it! It's me, let it be you! Don't ever believe them if they give you a certain number of months or years to live. The internet said I had 4 months! It means nothing, and they are usually wrong.

 

Also if you live in Los Angeles, please check out the Cancer Support Community! They have groups for patients, caregivers, and family. They also have all kinds of classes from art, photography, meditation, yoga, you name it, they have it, and it's all FREE! They saved my sanity. It can be very tough going through this (I did it basically alone as I am single), and they helped me greatly.


Bill Ball - April 2011

I'm 50 years old and in November of 2009 I was feeling clumsy and had a high blood pressure one day. My wife took me to the ER where they listened to my symptoms, checked my heart, and did an MRI. A Neurologist said a brain mass was present, so, I was transferred to The Hospital of the University of Pennsylvania (HUP). They discovered 2 spots in my lungs. A bronchoscopy and analysis revealed melanoma cells. I had a

craniotomy to remove the brain mass which the surgeon suspected cancer, and later we were told it was melanoma.

My wife is a nurse, and has totally been my advocate and caregiver. We were both shocked that the problem was Stage IV Melanoma metastasis. I am considered as having an unknown primary site.

After the craniotomy, I was unable to move my left leg so I had intensive rehab therapy to walk again. Then, I had precision radiation therapy (Gamma Knife) to the brain area to get any remaining cells. I started on Temodar chemotherapy for 5 nights every 28 days. I'd suggest to others using Temodar to drink plenty of water and take laxatives.  I've had to have more radiation because more tumors have developed in areas of my brain.

Now I'm dealing with swelling in my brain where they did the radiation. This has caused several seizures, in December 2010 and a Grand Mal one in February of 2011.

I have worked part-time when I was able, but now in April my mobility is hampered making it hard to get around. Many tests have shown I still have my brain function and can think well, at least for anyone reaching 50.

It's important to have an advocate, and my wife is the best. She schedules and interprets for me, the many doctors' visits to Neurology, Oncology, Neuro-radiology, Ophthalmology, and even balance therapy. Prescriptions and ordering medication takes time for her. She is an encourager as well as my son and daughter, as it pays to stay positive. I give praise to God for each new day.

Appreciate and have fun with your family and friends.

 

Laura Michael - April 2011

My story began in October 2007. I had found a red spot on my back in September and made an appointment with my dermatologist. This was a raised, dry looking spot. I knew when he took a biopsy that it wasn't good. I got a call that it was melanoma and that a PET scan would be needed as well as testing for the main lymph node in that area by removal.

My first surgery was Halloween, 2007. My doctor called me within 5-6 days and confirmed it had spread into my lymph nodes and that the rest under my left arm pit would need to be removed and tested.

My second surgery was performed on November 19, 2007 at the University of Alabama (UAB). Like the first, it was conducted as an outpatient service. I requested that if at all possible, I wanted to come home. I was sent this time with a drain tube that was stitched on the outside of my body. This was definitely the worse of the two surgeries for me. The test results came back negative for having spread to any other lymph nodes; so I felt I was in the clear. I was scheduled to have CT scans and see my oncologist every 3 months.

So, I went back to work in December.  January 2008, my husband was diagnosed with Glioblastoma Multiforme (primary brain cancer) in two spots of his brain. He died 2 weeks later after brain surgery while he was in rehab.

I suffered a stroke in August 2009 ~ another scare as they thought the melanoma had moved to my brain - lucky for me it was a blood clot that went through a hole in my heart (that I did not know I had) and I had a full recovery.

I finally made it to going to the oncologist every 6 months in 2010. In December 2010, my CT scan showed suspicious areas in my chest so my doctor scheduled a PET scan. The cancer had spread to more lymph nodes n my chest, five areas.

I am now Stage IV and have been receiving chemo treatments every 3 weeks since January. I get a scan every 8 weeks. My last scan showed no growth, but no reduction; a small victory.

I just had my first grand baby in December, a preemie born 2lbs 13oz. We are both fighters and I know God has a plan for me and has given me many warrior friends that pray for me; love me; and expect great things from me. I have survived much pain and hardship.

My youngest daughter graduates high school next year and I plan to be here. The doctors give me a year or so, but God is on His own time schedule and ultimately it is He who will decide. None of us are promised tomorrow, I am just blessed I am aware of my cancer and they are trying to extend my life until a cure is developed. I have too much to live for and refuse to die for the sake of cancer.

I'm only 48 and there is so much I have to do here and hope to be of help to others and take away the fear and the darkness. God promised to be with us and He has never abandoned me, not in my loneliest or darkest moments.

 

Jeff Berg - February 2011

I was diagnosed with stage IV melanoma in November 2008.

I'm 61 years old and in remission right now and have been since about August 2009.

I was having really bad night sweats and working very hard in a very stressful business that I owned.  I went to the doctor, not for the sweats, just to get my regular prescriptions re-written (high blood pressure, high cholesterol, etc.).  I mentioned the night sweats and a small lump I'd noticed under my arm.  I was sent to an oncologist who at first mis-diagnosed me with either Hodgkins disease or some other cancer.

After a biopsy of the lump, it was determined that I had melanoma.  They couldn't find the origin of the disease.  Nothing on the skin.  After a PET/CT scan, they found that it had spread to my brain and found another tumor on my kidney which they assumed was also melanoma.

They wanted to do surgery right away on my brain.  I asked if it could wait a bit and they said "No" I needed to do it right away.  So, on December 18, 2008, I had brain surgery and spent about 3 and a half days in the hospital.

Soon after, I was prescribed Temodar 280 mg and an anti-nausea pill.  I was on it for about 8 months and after all the tests kept coming back that the tumor under my arm was shrunk almost to nothing, they said I could stop taking it.

My kidney tumor hadn't changed so they did a biopsy and found it to be benign. The doctor had told me that Temodar works in about 25% of the people and I was lucky enough that it worked on me.

The only real side effect I had was exhaustion from the Temodar, although I did use medical marijuana, as well.

I just had more tests and I'm still cancer free.

It was sort of a tough go because I was forced to sell my business and didn't have much help being a single man.  I sold it in February 2009 and have not worked or needed to since then.

One of my biggest challenges was to go about dating, with melanoma always in my mind.  I felt that I had to tell women my story and I'm sure it scared many of them away, but in November 2010, I met the love of my life and we are happy and she is very supportive.

I can tell other patients that I really thought it was a death sentence but I see there is hope and it doesn't kill everyone.  I went to and still go to the Wellness Community in Los Angeles and participated in group counseling as well as other programs such as yoga, cooking classes, etc. and still go there and have made many friends.

This is a disease that you don't want to go through alone.  I still get stressed every four months when I go for tests but that just goes with the territory. I'm very grateful to be alive.

 

Stephanie Bowen - February 2011

My name is Stephanie Bowen and I am 40 years old. My current diagnosis is Stage 4.

My melanoma actually was first spotted 10 years ago as a mark on my left forearm. At this point it was a clark's level 4. I had the spot removed and a lymph node biopsy and really thought cancer was in my past. Then, November of 2010 I noticed a lump that had been growing since Sept, under my left arm. It took a while for a diagnosis, but I received a stage 4 metastic melanoma diagnosis mid december. I was so scared and did not know what to do. I live in a very isolated area, high in the sierra nevada mountains of california and I knew I would need to leave my home to live. I ended up in Southern California at the John Wayne Cancer Institute. From here, and after discovering my melanoma had spread to my lungs, I was directed to the Angeles Clinic in Santa Monica, CA.

From the Angeles Clinic I have been put in a treatment plan of biochemotherapy. This approach has me hospitalized for 5 days and treated with a combination of chemo meds and immunotherapy meds. This treatment is very aggressive and I lost my hair in about 3 weeks. The doctors monitor my liver and my blood in order for me to continue the treatment. Good News, the treatment shrunk my tumor from 16 cm to 6 cm. I will get another CT scan tomorrow and I am praying my stage will be downgraded.

My biggest challenge is being away from my family. They are holding the homestead down and I am in the southland of CA receiving treatment. I would say to someone who has melanoma...do not give up, do accept unacceptable negative attitudes from doctors about your diagnosis. I am so fortunate that my doctors are positive and honest. They told me if things look bad, they will tell me, and until then we try to laugh, in between the crying. Be sad, be angry, but go where you can get treatment. There are a lot of advances in the treatment of melanoma. We need to stick together as patients and know that despite the toughness of the treatment....we can do this! I want to hug all the other melanoma patients in the Angeles Clinic and say we can do this!!

What have I learned? My Mom and I are constantly reminded that "there are no big things." After having cancer, all else is trivial and I pray to be a kinder person when this is all over and I am home again.

 

Mark Williams - February 2011

My story started 3 1/2 years ago, September 2007. We had just dropped our oldest daughter off at the airport for trip to Europe for 3 months of school in France. The following week I noticed a lump in my collarbone area. My primary care doctor saw me right away and said it needed to be CAT scanned, did that within a week and she called saying I needed to see a ENT right away.

I meet with the ENT, who scheduled a biopsy that week. He waited a week (the longest week of my life) to tell me it was Malignant Metastatic Melanoma. He said no one survives. He referred me to an oncologist who had a PET scan done and on my 50th birthday (3 1/2 weeks from when I first felt the lump) he informed me I had 14 tumors (9 on my lungs and 5 in chest cavity, including one pressing against my esophagus (5cmx5cm) saying sorry, but he couldn't help me.  BUT, luckily he sent me to see Dr. Brendan Curti @ Portland Providence Cancer Center - what a blessing.

After agreeing to see me on his day off, he informed me about Pro-Lukien II (IL-2). He was and is always upbeat! After explaining some other options for clinical trials, I decided on IL-2.  He was very upfront about the intensity of these treatments. I have lifted weights and ran for years and now maybe there would be a pay-off.

Ironically, the hospital I received my IL-2 at is on the same street I grew up on! My first cycle went pretty good, ... except for having a heart malfunction and ripping out my IJ line. But, because of the great nurses and staff, they stabilized me. I was able to take 8 doses, all along the nurses and doctors kept encouraging me, reminding me it's not if you can take all 14 doses, it's the IL-2 revving up your t-cells.

I came back 2 weeks later and took 10 doses. Then I had the month wait. Had a very nice Christmas, as my oldest daughter had come back from Europe and I took my whole family to San Francisco for a Bowl game. When it came time for the scan again Dr. Curti stepped up and came in on his day off - December 31st - to tell me the GOOD news that my tumors had shrunk by over 50%!!!!.

So, I got to go back and receive two more cycles (18 doses over the 2 weeks).  Waited that month again and was told it looked like the tumors may be dead!. 2 more weeks of IL-2 (11 doses).

Had 6 months of clean scans.  Then, in December 2008 was told I had a hot node in my scan and they wanted to do surgery. They removed 50 lymph nodes and only one came back as melanoma, the rest were negative (the surgeon was completely surprised he thought there would be 10-20).

Dr. Curti had said all along that this was just a blimp on the radar screen. I had 25 rounds of radiation (targeted therapy). That was 2 years ago! I have had clean scans since. Have only had minor side effects. I did physical therapy and acupuncture to relieve pain from surgery and radiation, also earlier for the IL-2, that has mostly disappeared.

My family has been my rock through all of this. The best part of all of this to me is how compassionate the doctors and staff have been, from Dr. Curti and his team to the people who cleaned my hospital room. I am blessed.

 

Cindy Rackard - January 2011

My name is Cindy Rackard, I am 45 years of age. I have one daughter who is 25 years old and recently made me a Grandmother to a beautiful baby girl, Brileigh Ann. I am married to a wonderful Godly husband who is my biggest supporter. I have spent most of my life outside due to living on a farm in the South. I grew up showing horses in an outdoor arena, going to the lake on the weekends, and having a pool in my back yard after being married. Wearing sun block was not something we even thought about. I have always been fair skinned with blonde hair and blue eyes. I probably got skin burnt every spring and summer growing up. As tanning beds became a popular activity to do I laid in one nearly ever spring and summer to keep a golden tan. I actually can remember when the news started questioning the safety of tanning beds. But I never gave it much thought.

My melanoma story began when I was 41 years old. I had a wart like mole on my left shoulder that would get aggravated by my bra strap and at times would bleed. I had been going on regular visits to my family physician due to being diagnosed with Fibromyalgia. I asked him to look at it and so he did. He told me he would remove it and send it off for a pathology report but he tried to assure me that it was probably nothing and that was just procedure. Later in the evening a couple of days later I got a phone call from his nurse telling me I needed to be at his office first thing the next morning. Being a nurse myself I knew that this was not a good thing. As I went for my visit he proceeded in telling me that it was Melanoma skin cancer and I would need to see an oncologist. And so I did. The oncologist set me up for surgery to remove the surrounding tissue and the sentinel lymph node. Not being educated that much on melanoma skin cancer I didn't think to ask any questions about what stage it was or did I need any further treatments. When I went in for my follow-up visit with the oncologist he released me without any information, any sort of recommendations of treatments or no instructions of any kind. So I went on about my life as usual not thinking any more of it.

In November of 2009, I had come home from church and was changing clothes when I noticed a unusual mass in my left breast near my sternum. I immediately had the feeling of my heart in my stomach. But I was not thinking melanoma I was thinking breast cancer due to my Mother having being diagnosed with breast cancer several years earlier. I went to my family physician the next morning and he set up a Mammogram stat. That very same night I had a voice mail from my doctor himself telling me that the radiologist and him had looked at the images together and both agreed I needed to see a surgeon stat. So I was set up with an appointment with a surgeon who went in and removed the mass. After my surgery he came out to the waiting room and informed my family that it was not breast cancer but he was almost certain it was cancerous he just wasn't sure what kind. My family had decided to keep this information from me until my follow-up visit but I could tell by the way they all were treated me it wasn't good. One week later as we sat in the surgeon's office I was given the news it was highly rare but it was Stage IV Melanoma and that in his 35 years of practice I was only the second patient he had ever seen or heard of Melanoma in the breast. He recommended that I have a full mastectomy with numerous lymph nodes removed and go to an oncologist. So I made the painful decision of having a mastectomy and went to see not one but two oncologist. I had decided to get two different consults on possible treatments. The first oncologist recommended Interferon injections for one year with radiation and the second oncologist said I wouldn't be able to handle the Interferon but recommended radiation and gave me only 3 months to live. Of course I walked out on the second oncologist and never looked back. I went with the first oncologist and I managed to do the Interferon in lose dosage for 8 months but I did have to come off of it due to being so sick and staying dehydrated all of the time. I did have a port placement in my chest due to my veins being so fragile and the staff having a hard time getting blood work from me. But after being hospitalized for a week being given IV fluids and pain medications that is when I decided it was time to stop. My daughter was getting ready to give birth to my first grandchild and I didn't want to miss out on one of the most wonderful moments of her and my life. Taking the Interferon for me I had no quality of life and my family did not support me in the decision to take it so it was just one more stress factor in my life. But every person and situation is different and each patient has to do what they feel is right for them. I was not a candidate for any clinical trails due to underlying illnesses.

It has been 1 year and 2 months since my surgeries and now I am at the point where I go to my oncologist once every 3 months for blood work-up and chest xray. I have had several scares but each time they do either a chest xray or CT of the brain and come back fine. The last visit I went to my oncologist and I asked him if they weren't doing a PET scan how would we know if the melanoma was back and he told me that they would wait on me to show signs of being sick and it not getting better after a week or so then they would investigate further. My circumstances are unusual because with Fibromyalgia you have generalized pain, headaches, fatigue and foggy memory anyway. My surgeon told me that he didn't know how I was going to deal with this because it was going to be so difficult for me to know what was what. And he was and is so right.

Before Christmas of 2010, I started having pain in my right flank and abdomen with nausea and vomiting. I didn't go to my oncologist I went to my family physician and I told him that something wasn't right but I wanted to just get through the holidays before we did any further testing. He agreed only if my blood counts were good. And so they were. It is now Jan. 6, 2011 and I seriously don't know what to do. I have felt very alone in this journey with Stage IV Melanoma because I have found no one with a story like mine. I have not found another patient who had it in their breast. They keep focusing on my lungs and brain but as a nurse I know the pain is more in the kidney, pancreas, and spleen area. So, I sit here and wait. Of course being a person who believes highly in prayer I just ask God to help me through this journey and to send others into my life who may can help me through this. And this is where I stand in my fight against Stage IV melanoma. I can only pray and hope that my story may help someone else.

My horse (Blaze), my shih tzu (Gizzie), my pygamy/nigerian goat (Sophie) have been extremely therapeutic for me in my fight against Stage IV melanoma. I go horseback riding nearly every weekend and it is amazing how it lifts my spirit and helps me to feel better.

 

Dawn Hart - January 2011

This is a two-part story.  Below is the first part of my story that I posted in March 2010 as a Stage III Survivor.  The second part is my story I am posting now as a Stage IV Survivor.

STAGE III - March 2010

My name is Dawn Hart.  I am 49 yrs. old.  I have 2 daughters and a wonderful husband.

This is how my melanoma journey began...

 

I noticed a growth by my butt in February 2009 that my nurse practitioner told me was a hemorrhoid.  She gave me prescriptions for this and nothing seemed to help at all.  So, I had been having female problems and ended up having a partial hysterectomy in July.  During this surgery, the doctor removed a hunk of skin we thought was either a wart or hemorrhoid.

 

A week later, she called and said it was Melanoma.  I was devastated.

Immediately, I was sent to a cancer specialist.  Within a month, I was having surgery to try and remove the cancer.  They couldn't get it all so I had an option of getting a permanent Ostomy and the anal muscle removed forever or wait out my time.

 

I am a Christian woman and knew I had only 1 way to stay alive.  Two weeks later, I underwent my next surgery to have the Ostomy put in.  They removed 3 lymph nodes also and found them all clean, no melanoma in any of them.

 

I thank God for Froedert Medical College in Milwaukee, Wisconsin, for everything they have done for me.  There is a wonderful Pre-Op nurse there named Shirley that helped me when I was so afraid, and prayed with me till it was time for the surgery.

 

God Bless this team of wonderful nurses and doctors.

 

In case anyone wants to know, that was the easiest thing to contend with.  Please don't ever be afraid to have that done if it is an only option.  It was scary at first, but became used to it very soon.

 

During one of my doctor's visits, I had her check a lump I had noticed in my right groin area.  She set me up for another biopsy to have the lymph nodes checked.  Well, it came back Melanoma, too.  So, in December I had surgery to remove 12 lymph nodes. I was then referred to radiation and started the end of January 2010.

 

I am now done with that and it went better than I thought.  I had the burning only in the end and a few blisters, but all is good.  The interferon (chemo) is next.  I start that in 2 weeks and am a little afraid, but I have my faith and God will see me through this, too.

 

I am trying to learn ways to try and keep my blood cells up so I can make it through the whole year.

 

I have so many amazing friends and an awesome family that has helped me through all of this.  I am so blessed!!!

STAGE IV - January 2011
I started Interferon in March. This is not a fun treatment but I want to try anything to keep me alive. I made it through the month of intense treatment and then went on and did 5 months of the at home treatment.

In August, I had my next scan and they found it had traveled to my Liver. There were 2 small and 1 larger spot. I was told the Inteferon was not working so off of it I was. I was afraid I was a sitting duck, because my doctor said I needed to go home and wait til it got bigger in order to do the new treatment, or have surgery to have 3/4 of my Liver removed.

I was not happy with letting it grow and spread and whatever, so I started juicing Asparagus. I had read it can kill cancer. SO I juiced 1 bunch of it every other day. I take 5 tbl. of it and add to other fruits and veggies I juice, in a 6 oz. cup, and drink this every morning and every night. Always on an empty stomach, it gets absorbed into your system faster and better this way.

After 4 months, I read the cancer would be gone. SO after 1 month of this, I decided to go for a second opinion at the Carbon Cancer center in Madison, Wisconsin. My doctor there told me once the cancer goes to your Liver you have 6 months to 1 year to live, without treatment. I told him I am a fighter and I am fighting this and I will win. He said that is the best attitude to have with cancer. I didn't tell him of the asparagus I drink, because doctors do not believe in things like this but still continued to drink it.

He took a CT, PET, Bone, MRI scans, and a MRI of my brain. When the results were in he said I have 2 choices, 1 is Temodore ( Pill form of chemo), or a trial pill made for Melanoma. I asked him to help me decide. I had no idea.

He then told me... Dawn, you are a fighter. We will try the Temodore, and attack this right away and see if it works. I take pills for 5 days out of every month. After 1 month, he said my blood tests readings went from 208 down to 100. He said it is amazing at how quickly it is working.

The next month, when I went back for blood work and a CT scan, we found out my 2 small spots are gone and my larger spot is now 1/2 it's size. WOW!!!!! He said I am a miracle.

I have just finished my 3 round of treatment and go back in 2 weeks. I am still drinking the asparagus. I believe the Asparagus is helping to shrink my cancer and will kill all of it my body along with the temodore. God is helping my get rid of this ugly cancer. Please try the asparagus if you can. It can't hurt. I don't think I would try it without treatment, though. The combo of both is probably what is healing me.

God Bless all of you and I will be back to tell my survivor story again soon!!!

 

Michael Kremer - December 2010

This is my story.  When I was young I was always out in the sun, either working on the farm going on summer float trips and spending countless hours outside with no sunscreen on.  When I was 28 I had a small mole removed behind my left ear and the biopsy revealed it was malignant melanoma cancer.

 

During the course of 5 years I had updated skin scans and dermatologist checkups every 6 months, it wasn't until the spring of 2009 that I discovered a small lump where my mole was removed.  After a couple of weeks went by I decided to visit my physician about the lump and he immediately had me scheduled to a head and neck surgeon.  Another biopsy was performed and they told me that melanoma had come back in my lymph nodes.  That spring I had over 50 lymph nodes removed from my left neck dissection, 3 were positive for metastic melanoma Stage III. It took a few weeks for me to heal and it was several months later that I was admitted to National Institute of Health in Bethesda, MD for clinical trials. 

 

All was good until May 2010 when a tumor was discovered localized around the left parodied gland Stage IV.  I had it removed this past June and will be undergoing radiation in the next couple of weeks at St John's Mercy.  I plan to move forward and accept that melanoma will be apart of my life but I will not let it stop me from living.  I will keep everyone posted and updated on my condition.

 

Sue King - May 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 Breslows 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

Heather Snyder - May 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 hoping 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!

 

Cathy Bjorklund - 2009

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 - 2009

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 - 2009

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 - 2009

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 old and 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!!< >