Samantha -- September 2013
Hi, my name is Samantha, and I am 23 years old. I first got melanoma May 2011. It appeared on my stomach, and I was not sure what it was. By the time I finally went to the doctor and got it checked out, they told me it was Stage III melanoma and that I needed surgery to remove it. So I went in for surgery, and before I got it, they said I needed a scan to see if it had spread anywhere. It turned out that it had moved it to the lymph nodes in my arm pit. So they had to go in and remove 20 of my lymph nodes.
It took a while for me to heal but I did recover nicely. After my surgery, I had to be on a medicine called interferon. I had to be on this medicine for a year. Within this year I lost half my hair, and so I shaved it off and started over. Right after that they lowered my medicine, and I started to get it back. But I actually liked it short, so it was not so bad. I experienced drowsiness and I was very exhausted, but I stayed positive. After my year, I was so relieved to be off my medicine. I now have been off it for a year, and I feel great.
Since they first found my melanoma, I have had three other melanomas appear, but I got those just in time. They just had to take small biopsies out and just in the doctor's offices. But I have had five other biopsies that I got taken off early and didn't get to that stage.
I have not ever really gone in a tanning bed, but I like to be in the sun and that is my downfall. But I have learned to stay positive and wear lots of sunscreen and sit in the shade. And always keep an eye out for any changing spots.
I would like to tell people never wait to go get checked out. If you see something suspicious, go in and get it checked out.
Wayne Call -- September 2013
My name is Wayne Call. I am 54 years old. I have been married for 32 wonderful years to Adrienne. We live in Queen Creek, Arizona. We have five amazing children and seven beautiful grandchildren.
In about February or March of 2011, a friend of mine mentioned that I had a mole in my upper left ear. I had never noticed it & could not see it. He suggested that I get it checked. I did not think anything of it until about September. At that time it started itching. I would scratch it and eventually a scab developed. I would pick the scab, it would heal over & I would pick it again. Each time the bleeding would last longer & I had to apply pressure harder for it to stop. I still did not think anything of it until one night while lying in bed I felt this burning sensation on my ear, my cheek, down the left side of my neck, and under my armpit. I said something to Adrienne about, but we sloughed it off. The next night the pain returned again & was more intense. It scared me a bit. I called a dermatologist the next day. They got me in about 2 weeks later.
He did a "full body" examination, and when he saw the mole in my ear he was very concerned and said that it did not look good. He cut the mole out to the ligament, as far as he could go in my ear, and sent it off to be biopsied. He called back 5 days later and asked that my wife come with me to see him. Obviously that raised a red flag, and we were both very concerned and worried. When we saw him he explained that my mole was over 4mm in size and that it had already perforated and ulcerated, which meant it was now below the surface of my skin.
He immediately sent me to a surgeon and oncologist who specialized in ear, head, & neck and could do lymph node dissections. We ended up going to the University of Arizona Medical Center and met with Dr. James Warnakke. He reviewed my pathology report and said they needed to do some blood work to see what my LDH level was. He explained that more than likely he would have to do surgery and would need to remove a "small" part of my ear. We scheduled the procedure for 2 weeks later on November 2, 2011.
In the meantime, we had a daughter that was getting married, and we were having the reception in our back yard. I had lots of work to do and did not want to spoil this very special occasion & ruin her wedding. I felt fine most of the time & we were able to have a beautiful reception in our back yard. Two days before the wedding, the doctor's office called and said that my LDH level was extremely high, which meant that more than likely the cancer was in my lymphatic system & had spread. I did not want to tell my wife or children and ruin the wedding, so I kept it to myself, which was very difficult.
Following the reception on a Friday evening in October, we all sat down to relax, & all the rest of our children said, "Ok Dad, we need to talk and we want to find out what's going on." I explained everything up to that point, and then I broke down for the first time and told them about the elevated LDH level, which my wife Adrienne did not know yet. I explained what that meant, it wasn't a for-sure thing, but as high a number that mine was, it was a very high probability that the cancer had spread. We all cried, we were all stunned, and we cried some more. I told them all that we have a very close knit family, we have a large extended family, we all love & respect one another greatly, and most of all we trust in God; we have a great faith the Lord is in charge. We knelt down & had a wonderful family prayer, and I was at peace with where things were headed.
One week later on November 2, 2011, we went down to the U of A Medical Center to perform the surgery. It ended up being over a 6-hour-long surgery. My wife was the last one there in the waiting room. Periodically a nurse would step out & update her "somewhat" with what was going on but not a whole lot of detail. Finally at about 9:00PM, Dr. Warnake came out. He explained to her what had taken place. A few days before the surgery I had noticed two lumps that had developed behind my ear, and they were very tender & fairly big. Anyway, he explained how they removed a portion of my ear, cut into my skull to try and get "clear margins," and then cut down my neck to my chest. They had removed 40 lymph nodes, six were cancerous; the two tumors behind my ear were removed & were cancerous - 12mm and 14mm. They took out my parotid gland and saliva gland, which were both cancerous. I had Stage IIIC malignant melanoma cancer. It was a very intensive surgery and affected hundreds of tendons, ligaments, and muscles that he had to cut into.
The next afternoon when I was finally somewhat aware of what was going on and in TREMENDOUS pain, the nurses came into change my bandage. I told them that I wanted to see what had happened. They were reluctant to do so, but I was persistent. What I saw next I WILL NEVER FORGET. It was devastating. They had removed over 60% of my ear, they had an 8" incision curving around my cheek, down to my chest, and a big hole in the side of my head where they removed my ear. It made me nausea and weak looking at it. I had not expected that at all. Anyway, my wife Adrienne had come back in with my sister, and she wanted to see it. I told her that I highly recommended that she wait. Like me, she was persistent. When they uncovered it, she gasped for air, put her head in between her legs, nearly fainted, and cried uncontrollably for several minutes. It was very difficult for me to see. We hugged, cried together, and held each other for a very long time. I told her that we would get through this - together.
My journey with cancer was only beginning. I was in tremendous pain. I have never experienced pain like that. I was in the hospital for 3 days recovering, and then we came home. I was taking a lot of medications to deal with the pain, but nothing seemed to help. I was constantly at an 8-10 pain, on a pain scale of 1-10, 10 being the highest. This lasted for weeks. We tried all different kinds of medications & eventually a combination of Lyrica, oxycontin 40mg, hydromorphone 8mg for break-through pain seem to be the best. To this day, 10 months later I am in constant pain, usually about a 3-5, but depending upon what kind of therapy & exercises I do, the pain will still get above 7-8 at times. It can be very frustrating dealing with the CONSTANT PAIN.
Unfortunately they were not able to get all the cancer out. The doctors wanted me to start radiation as soon as I could. We started radiation the second week of December. It was a very intensive radiation. They made this "Jason" mask where I would get strapped down on a table with this mask over my face. They would do a very high dosage 3 days a week for about 25 minutes, and they did this for 3 weeks through the end of December 2011. My throat became very sore, and I could hardly talk, eat, or swallow ... a very painful experience with the sore throat. They did give me some liquid medicine that relieved the pain somewhat, but it took weeks to heal.
During all this time, I had been bombarded with well-wishers, good friends, family members, etc., who all had "cures" for cancer. It was really unbelievable how many people knew that the product they had would cure me. Bless their hearts, but none of them could give me a name of one person who had Stage IIIC and was cured. I contacted a couple of naturopathic doctors and asked for a patient referral that they treated with Stage IIIC malignant melanoma cancer, & none of them would give me a reference. I spent probably 100 hours researching things on the internet. Aim at Melanoma, American Cancer Society, all kinds of web sites. My wife and I had determined that after all the research what we felt was best for me in my circumstance at that time was to do the radiation, followed up by chemotherapy.
I started my chemotherapy in February. It was an IV treatment 5 days a week, which would take about 1 ½ hour or so. I was taking SYLATRON peginterferon alfa - 2b. It would make me very sick. I had nausea & vomiting, 102 degree fever, aches & pains in every joint ... it was awful. I would just come home and sleep. I had no appetite and no strength or energy to do anything. I would see all these people who were usually older than me, smaller & tinier, and would think that someone my size, 6' 1" 250 lbs, could handle this thing. Boy, was I wrong. It just knocked me flat out on my back. I literally was unable to do anything for weeks.
I did this for weeks, until mid-April, at which time I began to have some other side effects. One weekend, I don't remember the details hardly at all, my wife said I was acting kind of "funny." I wasn't making a lot of sense when I would talk; I would walk real slow & had slurred speech somewhat. She was concerned but knew that we would be going in on Monday for another treatment. By the time I got there I did not know where I was. She told the nurse what had been going on, they immediately put the oxygen thing on my finger and my oxygen level was at 64. They were in a panic. Adrienne said that all kinds of things began to happen. They said I needed to get to emergency immediately. Adrienne said she would just put me in the car and drive me across the street to Chandler Regional Hospital. Literally it was less than one block away. They said, oh no, an ambulance with paramedics will come get me.
Again I don't remember all the details; by this time I was completely delirious. They took me to emergency, and my wife said that I was screaming at the top of my lungs. It took eight people to hold me down, & I was fighting everything they were doing and yelling out loud, saying things like ..."they are trying to kill me," "this doctor does not like me," etc. ... quite hilarious, but not really. They finally intubated me, gave me oxygen, and put me on a breathing machine. They transferred me to the Gilbert Mercy Hospital in the ICU for the next 4 days. It was a difficult time & painful time. We discovered that my epiglottis had been damaged/burned during the radiation treatments back in December. Everytime I swallowed I was aspirating. My food was going into my lungs, not my stomach, and I had a real bad case of pneumonia. My lungs were completely full of fluid. My epiglottis was not working properly. I failed two swallowing tests while in the hospital, got put on a feeding tube, and was released 13 days later. It was not a good time. I can't remember the liquid "food" I had going through my feeding tube. I would have to use a pump, and it would take 6 hours to feed me. I would do it once during the day and then pretty much all night. It was not a pleasant time. I do not recommend this kind of diet. Since my initial prognosis of cancer thru May 2012, I had lost 60 lbs. I needed to lose some weight; I just don't recommend this type of diet.
I did speech therapy for 5 weeks. My insurance would not cover it, but I was so blessed to have a niece Rachelle who is a licensed/certified therapist. She worked with me for 3 days a week for 5 weeks and would not accept 1 dollar from me. An incredible blessing and tender mercy from the Lord. Her employer even offered to do the swallowing test and doctor analysis at the end of 5 weeks at no charge. I was so humbled and so grateful.
I have since passed the swallowing test, and I no longer have the feeding tube. I started Intron injections that were 3 days a week. I got very sick with those, high fever, chills, vomiting, etc. ... did that for almost 3 weeks and then became very depressed, could not sit down at my desk and make sense of things, and was somewhat lost. The doctor said I was having a reaction to it and made me stop. We took a break for a few weeks, then lowered the dosage amount and began doing it again 2 weeks ago.
Today I woke up very depressed, tingling throughout my legs & body, and very anxious. I went to see the nurses and my doctor, and they want me to stop again. So I'm not sure what the plan is right now. I'm a bit discouraged by all the reactions my body has had. I DO NOT want to quit; that is not an option. I had a PET scan also today, hoping that it will be clear, no new spread of cancer. I will find that out this coming Friday.
That is my story. I hope it helps others. This is not an easy battle, but with family, friends, loved ones, and trust in the Lord ... I WILL BEAT THIS THING and I know that you can to.
Michael Tuell -- September 2013
My name is Michael Tuell. I am a father of a 5-year-old son named Jayden. I was 26 when I was diagnosed with Stage IIIc spitzoid melanoma. It had started when a mole came up on my foot in 2010. I really paid no mind to it until it started changing shapes, itching, bleeding and changing colors in the summer of 2011.
Finally I made an appointment with Panzer Dermatology. The doctor did a biopsy and was pretty sure it was a tumor or melanoma. After 6 weeks of waiting the dermatologist called and said that I needed to come in tomorrow, they were diagnosing my mole as a spitzoid melanoma (rare skin cancer). My mom, Anna, and I went in the next day, and of course, he confirmed the worst news anyone could hear ... CANCER! Since I also found a few cysts by my groin area, we feared that it had spread.
We met with the surgeon, oncologist, and nurse advocate at Helen Graham Center in Newark, Delaware, but as a second opinion I went to Abramson Cancer Center UPenn Hospital in Philadelphia PA and met with Dr. Czerniecki. He called in a team to do a biopsy on the cyst, and it came back positive for cancer. He then scheduled me to have surgery that Friday. Dr. Czerniecki removed the cancer from my foot, which needed skin grafts from my thigh, and removed 14 lymph nodes, of which four of them came back with cancer. I spent 5 days in UPenn Hospital.
After recovery I went back to Helen Graham Cancer Center to Dr. Suppiah for my treatments of Interferon 5 days a week, 2 hours a day for a month, then did self-injections three times a week. I only made it 4 months on the treatment, due to my body was not reacting to it the way it should. I lost too much weight. My oncologist then decided to give me a 3-month break to try and build my immune system up and gain weight. In September 2012, I started pegylated interferon, which is one injection a week.
I have decided that this September 2013 I will go off all treatments. I have had PET scans every 6 months and have been NED since October 2011. My next scan will be October 15, 2013. Praying for good results.
This disease has truly changed my life and everyone's around me. I feel this world has not been given enough information that "melanoma" is not just cancer ... BUT a cancer that has no cure. We need to let the world know just what this "BEAST" can do to you. My biggest challenge is having the energy and strength to continue to fight this beast and to watch my son grow up. Just remember it can happen to you or someone you love. Just give them as much information as you can on what can happen to you if you sunbath or tan in beds. Always use sunblock!
Sheila A. Stanton -- April 2013
My little story on skin cancer ... my own MeLaHella. I was given the news on May 5, 2011. The doctor called, saying I had melanoma and not to take it lightly. He had already scheduled an operation with a doctor I didn't know. Yes, I thought that was a bit odd. I was out of control or, should I say, out of my mind. I heard nothing except "melanoma" and "surgery." I chose my own surgeon, who was fabulous. He did a wide excision and sentinel lymph node mapping. They also ended up taking four lymph nodes from my groin.
I am very pale blond with green eyes ... prime candidate. I never was a sun goddess or tanning bed user. I also rarely showed my upper thighs (where my odd-looking mole was hijacked). I had a plastic surgeon do the surgery, as the cut would be wide and deep. I also, at that point, had four lymph nodes taken out in my groin. Then the great news came ... three were positive for melanoma. So that means I am Stage IIIb.
Two weeks later, I was back in surgery for a radical lymph node dissection to remove the rest of my lymph nodes from my groin. Finally good news ... no melanoma found! I left with a new friend, Mr. Ceamore my drain, which I carried with me for 3 weeks. That was so awful to me. He was almost the death of me ... HATED him, but he had a very important job to do.
After that, off to the oncologist to get a plan in action, which was the start of the never-ending issues. I decided on the interferon for 1 month 5 days a week IV, then 11 months of three shots a week. I had a horrible reaction to the interferon ... flu?? Not quite ... the PAIN ... never experienced such pain in my life. Every 2 months, I was sent in for PET scans. The second one showed spots on my lungs. All I can say is that was the worst news AND my worst fear ... it spread to the lungs and now I will die. After a CT and a lung biopsy, it came back NEGATIVE!! Oh, the relief!
Then 2 months later, more spots appeared, and the ones I had were growing. So back for a CT and another biopsy of the lungs ... which I had pneumothorax. Very fun. Again it came back negative. My oncologist/and lung doctor were baffled. January rolls in, off to meet another lung specialist and another CT and another biopsy. This biopsy indicated that I had sarcoidosis induced by interferon. That is one of the reasons of my severe pain. By February I could barely walk. My oncologist took me off the interferon, and we hoped my sarcoid would leave. But it is still hanging on, like last year's shoes ... unwanted.
While at another visit, the doctor noticed one of my pupils was larger than the other. They tested me and found out I had Horner's syndrome and needed a MRI of head, neck, and chest ASAP. (Yes, I glow in the dark!) Lo and behold, I had a brain tumor "the size of a peach." Good news, they said 98% not cancer; bad news, not the cause of my Horner's syndrome. I had brain surgery (craniotomy) last year March 28, 2012, and had the brain tumor removed.
I have PET scans every 3 months, as they never come back 100% clean, but so far I have had all negative biopsies. So I will not complain. I also get MRI of my brain every 6 months and CT of chest. This has been my life. Always a bit nervous, but it's the process and life of a melanoma survivor. I feel as I am finally moving on with my life ... traveling and again working full-time to just keep up with my medical bills. I am reminded of my melanoma when I look down at my leg and see the indent. I check my body regularly for any changes (luckily, only change is my weight). I am also at the dermatologist every 3 months.
I feel very lucky, and I know I will never forget how lucky I am that they caught it. I also feel extremely lucky as the support that I received from my family, friends, doctors, and other melanoma patients. I never joined a support group or wrote a blog. It's been a real eye opener, and it will be a lifelong journey.
That's my little story. It will be my 2-year anniversary of being a survivor. I am hoping to keep my stage at a standstill. Standing strong and every day is a new day. Cherish what you have. :)
John Garcia -- April 2012
Hi! My name is John Garcia. I am 49 yrs old, and I am a melanoma fighter from southern California.
I noticed a mole on the back side of my left leg about 18 months ago. I paid no mind to it because I thought, well, everybody gets moles at times. Fifteen months after having that mole, I noticed it was starting to grow and itch. After a couple weeks of that, I made an appointment to see my doctor. After seeing him, he sent me to see a dermatologist. She cut the mole off and said she would get back to me in about 2 weeks. In less than a week she called me at work and said, "John, are you sitting down?" I said, "Yes, I'm in my office." She said, "I'm really sorry but I have some bad news for you. The mole we took off the back of your leg is cancer called melanoma. The size was 2.2 mm." This was in Dec 2011. I figured it was no problem because they cut it off so I am in the clear. I was very wrong about that!
She made two appointments for me, one to see a surgeon and the other to see an oncologist. I went to see the surgeon first. He informed me that I had to have surgery on the back of my leg to take the rest of the cancer out and also he needed to cut me on the left side of my groin to see if the cancer had spread to my lymph nodes. I could not believe what I was hearing! Then I went and saw the oncologist, and he talked about different treatments and different options that I have.
I went in for my first surgery, and he found three lymph nodes out of four tested positive for cancer. That's when the surgeon told me I was at Stage IIIb cancer. I went in for the second surgery, and he removed nine more lymph nodes, which tested negative for cancer. Ten days later, I got an infection in the wound so I had to go back for another surgery. This time they could not close the wound, so now I am in a nursing home with a wound vac, and the healing time for that is about 3 months. I cannot start any kind of other treatment until this is healed up.
For those of you who are going through this or have some loved one going through it, I understand your pain. Since my family and I have been going through this, I see things differently. Life is so much more important to me; my family is so much more important to me. Not that they weren't before, but it's different now. Everything is different now. I can honestly say, in the past 5 months I have grown in many ways and what a blessing that is. The things that keep me strong are my faith in God and my family. They give me strength and the will to live.
This has been the biggest challenge of my life, fighting for my life, and it is not over by any means. I still have to do radiation and maybe interferon for 12 months. After this experience with melanoma, I will live to educate others on prevention of this disease.
Thank you and much love to all who are in the fight ;)
Jessica Hunter - March 2012
My name is Jessica Hunter. I am a 25-year-old registered nurse, and I was diagnosed with melanoma on July 13, 2011.
In June 2011 I had gone to my dermatologist because I had noticed that I had a strange mole that probably needed to be removed. My dermatologist removed it the day of my appointment and then I did not think anything about it until 4 weeks later when I got the phone call from my dermatologist that said, "You have melanoma. I have no idea what stage it is currently but you need to go see a surgeon and an oncologist immediately." It took me a while to understand the severity of what he had said because I was thinking "Well, they took the mole off and skin cancer is just usually superficial, right?" Unfortunately I was wrong.
I had my appointments with the surgeon and my oncologist, and it was discovered after the first surgery that I actually had Stage IIIB melanoma, which meant it had spread to my lymph nodes and they would need to be removed. This was very shocking, but they did move pretty quickly on the surgery. Recovery from that surgery took about 4 weeks, and I had to have a drain the entire time. :( The next step was treatment called Interferon. I had to complete 1 month of high-dose treatment, which was 5 days a week M-F for about 4 hours a day. After that month was over, I had/have 11 months of lower-dose interferon, which is subcutaneous shots three times a week that I can do from home. I am currently 6 and a half months in, and I am very excited to be past the half-way point.
My life has changed so dramatically since the diagnosis happened last July. Not only have I matured as a person but my priorities have completely changed. My life and being active and happy is the number one goal in my daily life. This happened to me for a reason, and I want to spend the time that I have been given by helping educate others on appreciating life and also keeping themselves healthy. One of the people I get a lot of inspiration from is Kris Carr, the author of Crazy, Sexy, Cancer. She does a lot of education on lifestyle and what changes it is really important to make. Another thing is I have educated myself and my loved ones on the bad habits/products/lifestyle things that we used to do every day that have the potential to cause cancer or other harm to our bodies. For example, I never really wore sunscreen as a kid and I went tanning in college, so those are probably the main reasons I developed melanoma. I think education is definitely lacking in our society about these risk factors and what these things can do to our bodies.
Much love, hugs, and prayers to those out there who are fighting for their lives and the amazing people who support them.
Angie Broussard - January 2012
Hi! My name is Angie Broussard. I am a melanoma fighter. I would like to share with you my journey and beyond.
I was diagnosed April 13, 2011, with Stage III melanoma. three surgeries later and currently in month 5 of 12 of Interferon, I continue to BELIEVE that I WILL WIN this.
I am attaching my story that I update often using caringbridge.org. Anyone is welcome to read my experiences.
Thanks so much for giving me a chance to share. I am hoping to attend the walk in Charlotte, NC.
Please go to www.caringbridge.org/visit/angelabroussard to read my story and journal.
Martha Adair - November 2011
I guess my story starts about 7 years ago in September of 2003. I, like everyone else, had a mole, but I let it go for about 6 years before doing anything about it. I went to my dermatologist and had the mole removed, and it was sent in to get results. A week or so later, it came back as melanoma. I had surgery a few weeks later and had to have skin grafting because it was close to a bone on my lower leg, very close to my shin bone. I used crutches for about 5 days, mainly because of the skin grafting. I got results that nothing spread.
Fast forward to 2010. I noticed a lump on my thigh that wasn't going away. I went to my doctor who looked at it and said not to worry about it, that it was really nothing. I had a dermatologist appt a week or so later; when I showed him my lump, he didn't want to do anything to it and sent me to a surgeon . She had a feeling it was something and it should not be in my leg. She scheduled me for surgery and removed it. Two weeks later, the results came back and it showed it was cancer. For a while it was undetermined what type of cancer. It was questionable whether it was sarcoma or melanoma. I was then scheduled for a major surgery at a large teaching hospital in Chicago. I spent 5 days there. I took a few weeks to recover and returned to work.
In April, I saw my oncologist and she scheduled me to have a PET scan. I had the scan done and found out that there was more cancer showing up -- Stage lllA or B. This time it was deep in my pelvic area. She gave me two options. One was Interleukin 2; the other was a fairly new FDA-approved drug but was not really covered by insurance at that point or took a while for them to decide and was also very costly. Each treatment was $30,000.00.
Long story short, within a few days of deciding which treatment, Yervoy (Ippi for short) got approved so that insurance would pay for it. This was an immune therapy. The Yervoy drug was an experimental drug but has great success. Yervoy had very mild to no side effects for me, although it can give colitis side effects, which can be bad if not taken care of. Mine were slight, depending on the foods I ate. I noticed that the foods with preservatives in them bothered me the most. Interleukin 2 has extremely bad side effects, with a hospital stay of 2 weeks. I had four treatments of Yervoy, with very few side effects. About the same time that week, my sister started chemo for early stage breast cancer. She is just about done with radiation now and has gotten through great. Oh, did I mention that we are twins? I finished it up in July and had a scan that showed that my tumor has shrunk about half the size it was. My doctor was a bit surprised to see it has worked that fast. She has hopes it will continue to shrink.
I go back for a CT scan the beginning of December and then will have a PET scan in January/February. So far so good.
Janet Summerville - November 2011
Wow, reading all your stories made me cry. My name is Janet Summerville; I am 56. I am from Seattle but living in NY State for now with my two sons and husband. I found a few months ago I have melanoma.
I discovered a dark mole slowly getting bigger on my left thigh. I had the mole for about a year, and it started to bled and hurt. A co-worker said I should have it checked out, and it was removed by a dermatologist. They removed it and called me a week later to tell me it was cancer. Roswell is a cancer center here in NY. There, they took out one groin lymp node and the skin surrounding the area where the mole was. They said I was a Stage Ib. I was off for about 10 days. I received another call stating that cancer was found in the node they took out. Now, I go back again for another surgery on the 14th of this month to have the groin lymph nodes out. I am told now that I am Stage IIIb. I will be spending 4 days in the hospital and 4 weeks recovery time.
So, the time is getting closer for this surgery, and you know I am very nervous about this one. When I am alone with my thoughts so my family does not see me cry, I think about the plans I'd made to move my husband and sons back to Seattle where my daughter and youngest son are. There is so much more I want to do, and I think "Why me?" Then I remember my mom use to tell me that everything happens for a reason, but God has a plan for me. I just pray that I will have many more years ahead of me, and that is his plan. So, everyone reading this, please give a little prayer for me on the 14th of Nov. when I go back into surgery.
Amy Ohm - August 2011
At the height of my career as a software sales executive and in control of absolutely everything in my life - I lost control of nearly everything with a stage III Melanoma diagnosis. I was traveling for business and caught sight of a small dark speck on the upper right side of my back. I was getting ready in a hotel bathroom with a mirrored closet behind me - I would of never seen the mole had I not been on this trip and in this particular hotel. Of course, I dismissed it. I was too busy being me! Three months later on a beach trip with friends, my friend asked me if I had knowledge of this dark and troubling mole on my back? I told her I would make an appointment. Again, I minimized the situation and when I finally got hold of a dermatologist I created zero urgency around my situation. I let them know I needed a skin check, but as a new patient they put me on the schedule for 2 months out.
When I was finally seen, I told the doctor I needed to be checked since I had never been seen. I am fair skinned, blue eyed and loads of freckles and moles. She asked if I had any areas of concern, with which I pointed to my back. Well, she took one look and said this needs to come off immediately with much concern in the tone of her voice. I asked her what she thought it was and she said they would let me know within a couple of weeks. Two weeks turned into only two days. Again, the tone in her voice was telling....Amy, you have Melanoma and I didn't get the margins - you need to be seen immediately at Washington Hospital Center! What? What is Melanoma...right away...can't this wait? We hung up and I immediately got on the web and searched on Melanoma only to be faced with my mortality on a number of levels. I was scared and alone. I was a mother of two young children...wife to the love of my life and college sweetheart...living the dream - how does this happen? I never imagined being diagnosed with cancer...why me?
My story starts to look like other Stage III patients at this point...wide excision, sentinel node biopsy, removal of nodes. It has been a journey and it continues to be top of mind for me. I think about Melanoma daily...I border on paranoid when I see something new, different or changing. I am constantly giving my kids the once over. But I do feel blessed to be a part of this club. I am a survivor and I will not let Melanoma take my life. I am committed to advocating for preventing and limiting sun exposure, protection and early detection. Because of my experience I founded www.treatmentdiaries.com to connect those with illness based on shared conditions and experiences through diaries. It has been extremely rewarding and it has given me purpose in my illness. I am reminded every day that life is short. It is important to LIVE each day and do all I can for those in need of the support I so desperately needed when faced with a diagnosis.
I hope my story inspires you to be the very best you can be and to live well in the midst of adversity. You can create purpose in what appears to be a valley...rise above and climb your mountain and inspire those around you.
Ellen Lail - April 2011
Stage IIIA - Currently Cancer Free!
Initial Diagnosis: December 2009
After noticing a little 'freckle' on my left cheek (in the fall of 2009), I went to a plastic surgeon on 12/21/2009 to have it removed. I was told not to worry because it hadn't been there long and it was extremely tiny.
Unfortunately, I was not so lucky. I was diagnosed with melanoma on 12/31/2009. The depth was a Clarks IV. I had a sentinel node biopsy on 2/19/2010 and it revealed the involvement of 1 lymph node. My melanoma was classified as Stage IIIA.
On 3/9/2010, surgeons did a wide excision, a complete neck dissection (left side) and removed my left parotid gland. The remaining nodes were cancer free.
In April 2010, I completed 4 weeks/5 times per week of Intron-A (interferon) via IV. I was unable to complete Phase II due to toxicity and extreme side effects.
I receive PET scans every 6 months, have routine physical exams by my oncologist every 3 months, and have skin check exams by my dermatologist every 3 months.
My doctors and treatment team were ABSOLUTELY WONDERFUL! Blumenthal Cancer Center at Carolinas Medical Center in Charlotte is AWESOME!
I have learned that life is precious and we cannot take one moment for granted! After treatment, I made the decision to take time off from my job as a school librarian to live life to the fullest and be an advocate for skin cancer prevention and awareness.
I encourage everyone to:
"Honor the past,
Live in the present,
Create the future."
Jay Allen - April 2011
Life was going good, you could say. I was a truck driver working long hours, had a beautiful family, and had just finished renovating our house.
I had this mole on my ankle that was there my whole life, but half way through 2007 it began to get itchy, scab up every now and then and would bleed. I thought nothing of it, I wore work boots to work and just thought it was them rubbing against it. After much persistence from my wife in January 2008, I finally went to the doctor and had it checked, the doctor took one look at it and said that's got to come out.
A few days later, I received news that the mole was a melanoma 1.95mm deep.
Our thoughts were, ok it's not good news but we will be alright, get it cut out, and get on with it. I had no idea what I was in for or just how serious melanoma is.
Fast forward a couple of months and this melanoma that was on my ankle had turned into a life threatening situation. I had two major operations, a bout of chemotherapy and now have to have check ups every 3 months, which include chest X-rays and blood tests for 5 years.
The melanoma had spread to one lymph node in my groin. I was diagnosed with stage 3 melanoma. I had no idea that a mole on your body can turn into something so deadly. A melanoma only needs to get 1 mm deep and can get into your blood stream or lymphatic system and spread to other parts of your body.
Melanoma is the most serious form of skin cancer. Alarmingly, Australia has the highest incidence of melanoma in the world and it is often referred to as "Australia's cancer." Melanoma is the third most common form of cancer in Australian men and women and is the most common of all cancers in individuals aged 15-39. Each year in Australia melanoma is responsible for 1200 deaths and 10,000 new cases are diagnosed annually.
Before my diagnosis I was a frequent indoor tanning user. My surgeon is adamant that this contributed to my disease so I have been advocating since December 2008 to increase public knowledge of the inherent risks associated with sun-bed use. I also would like people to be more sun -smart and get regular skin check ups. Early prevention is the key. Melanoma is almost 90% curable if caught early.
I have just reached a major milestone in my cancer journey, 3 years cancer free. My diagnosis has been life changing. I no longer drive trucks and am now working for Melanoma Institute Australia. I also facilitate melanoma support groups throughout NSW, Australia.
Melanoma Institute Australia aims to be a global leader in the research, treatment and prevention of melanoma. The Institute is dedicated to minimizing the devastating impact of melanoma on the community and is working to ultimately find a cure for melanoma.
If there is one message I can give it would be to check your skin regularly. Particularly any moles that increase in size, change in color, change in shape/irregular border, Itch or bleed, or anything on your skin that doesn't look right.
If you have any of these warning signs get your skin checked by your doctor.
Melanoma is not always just a bit of skin cancer that gets cut out, it can be quite invasive and can kill you.
It happened to me and it can happen to you too. Melanoma is Deadly serious.
Amanda (Cramsey) Gibbs - March 2011
Ten years ago doctors told me I had a 30% chance of surviving five years.
At 19 years old, and in my very busy freshman year of college, I became a Stage III melanoma patient. After under-going a handful of surgeries to remove the melanoma, cells, and lymphnodes, I opted to join a research team out of Santa Monica, California, and put myself through experimental vaccines. I flew to California several times over the course of the years that I was involved in the experiment.
I have been Miss Adams County Fair Queen and Miss Quincy using the platform of "skin cancer awareness and prevention". I have traveled to many area schools and organizations sharing my story and encouraging people to be "sun-safe".
I recently returned from Western Illinois University where I had the opportunity to speak to over 100 high school students.
It is my hope that one day we can get this terrible disease under control.
*Pictured with me in October 2010 are my kids Madalyn and Henry. One of
the possible side-effects of my treatments was supposed to be infertility. I am so blessed to have a happy, healthy family.
Pam Roach - March 2011
Current Stage: Total Remission for 11 years
I discovered my melanoma while showering in Grand Haven, Michigan - as we were camping - on my birthday. Having gone through cancer with both of my parents and my husband (all survivors), I figured that I had breast cancer like my mom. What I felt - way, way up in my armpit was a tiny nodule. Scared to death - yes. As soon as we got home I called my mom's surgeon and he did a biopsy (but before he could do it I had to show him how far up my armpit it was - as he couldn't feel it). I felt like "yes - it REALLY is there - trust me."
He called me three days later (by phone is not a good idea). He said, "I'm sorry Pam but you don't have breast cancer - you have melanoma - Stage III. I was then sent to my husband's wonderful oncologist and he had me in the hospital that night - after they removed all the nodes under my right arm - finding that 2 were full of cancer but no where else in my body. Then he said, "Pam, you have Stage III and the type that you have is very aggressive and we give that kind/stage a 15% chance of any recovery. Damn- not what we wanted to hear but I am a glass half full girl - so onto more tests - and finally found a 6 year clinical trial - which included one grueling year of interferon high dose. I DID IT!!! I didn't quit like many are apt to do - I am one of the few blessed ones! Wow - I DO know how lucky I am.
My husband and I are FULL time volunteers for the American Cancer Society in Grand Rapids, MI. We have been co-chairs for our Relay For Life of Forest Hills, we are on the planning committee, we are very active with the ONLY HOPE LODGE in Michigan (right in Grand Rapids) and I have just become the volunteer coordinator of the Cancer Resource Center for the ACS. We connect patients and their families with the free services provided by the American Cancer Society - including the HOPE LODGE - where patients and caregivers stay for FREE! I also run the prayer shawl ministry for the Hope Lodge where we give each cancer 'guest' a prayer shawl - which shows them how they are loved by someone that they don't even know - and I have expanded that to include shawls for all cancer patients at Cancer and Hematology - which serves 95% of all cancer patients in the Grand Rapids area.
Am I blessed? Absolutely - I was taught as a child to give back and I am doing that and hoping that I teach others to do the same.
My biggest challenge is I don't have enough hours in my day. I truly love life - always have - always will. If there is anything that I can possibly do to help anyone going through this cancer journey - I will do it. No one should go through it alone. I didn't know a single person with melanoma - let alone a survivor - now I can say - I AM ONE!!
Chris Apgar - January 2011
I'm Chris, a 33 year old Husband, and Father of three beautiful little girls as well as an active duty U.S. Marine of 14 years. My girls are Skylar who is 11, Ashlyn is 4, and Keely is 3. In December of 2009 I had a mole on the left side of my forehead that was changing rapidly. It seemed to have doubled in size in a period of about a month. After seeing my primary care doctor I was referred to dermatology, and they did a shave biopsy. This was on January 6, 2010. On January 13, 2010, I received a phone call that changed my life. The pathology had diagnosed the mole as a T3 melanoma. The unfortunate thing is that I wasn't at home, I was on my way to Europe on business, and when I returned to Seattle is when the fun began. I was referred to the ENT clinic at Madigan Army Medical Center, and met three Doctor's. I was scheduled for a PET scan, sentinel lymph node biopsy, a wide local excision, and possible left neck dissection. This was February 10, 2010. My surgery was scheduled for February 25th. That evening of the 10th, I noticed a bump had developed on the left side of my head right under where the original mole was located. When I returned to the ENT clinic for a pre-op check up on the 17th, I told them, and this changed the surgical course. I no longer needed a sentinel lymph node biopsy because they now knew which one the sentinel node was. The PET scan results also confirmed the sentinel node, but showed no distant metastasis.
February 25th finally arrived, and I reported into the surgical department. I was put in a bed, given an IV, and all of the fixings. Before I knew it, I had awakened in the recovery room 10 hours later! I was put in the recovery ward where I resided for the next three days. The following morning, the Dr had come to speak with me and told me the news. They removed 65 lymph nodes from the left side of my head and neck. The reason they did is because there was visible melanoma metastasis throughout the lymphatic channels and in the nodes. I went home from the hospital on February 28th and eagerly awaited the pathology report.
I went for the first post-op follow up that following Wednesday and was notified that 13 of the lymph nodes were positive for metastatic melanoma. This put me at a stage IIIc. I was then told that my chances of beating this disease were not as good as it beating me. My overall 5 year survival rate was only 28%. Very hard news to take...
I was referred to oncology, and radiation oncology. After talking to two different oncologists, I decided to turn down the interferon regiment of treatment because of the lack of a plausible benefit. I did however take radiation treatments, and those began on March 30th, and ended on April 13th of 2010. I received 5 heavy doses of radiation treatment that made me very ill, and burnt pretty bad.
Since then, I have had routine follow ups, and two repeat PET scans. The two PET scans have both been N.E.D. and the dermatologist has not biopsied anything else. I am covered with freckles as I am a fair skinned person, and I've had many types of sunburn throughout my life. Fortunately for me, being in otherwise good health, and pretty athletic I healed very quickly from surgery, and radiation treatments. I have gone back to my normal life of being a military family and am back on the field with my Ultimate Frisbee team, as well as the unit softball team. It's been almost a year now, and my ENT oncologist is very pleased with progression of everything and the consistent NED results. I take each day as it comes now, and live it as if I were dying. I spend as much time as possible with my wife and children, they are my life. Special thanks goes out to my family, friends, and God for guiding me down this bumpy road, without them, I don't think I would've been able to handle what I went through mentally.
Kellie - November 2010
I'm a 44 year old wife, Mom of four and Grammy of two. In 2005, I noticed a small dark mole which had popped up on the outside of my left knee. I went to my Primary Care physician to request a referral to dermatology to have it removed since I had been accidently cutting it while shaving my legs. My doctor told me in his lingo that it was a mole and of no concern and if we have everything removed we would end up looking like Swiss cheese. Since he was my doctor, I trusted his medical opinion and did not get the derm referral.
Months later in the early part of 2006 my parents looked at the mole and asked if I had it looked at recently. I told them about 8 months prior and they urged me to have it looked at again. I went back to the same doctor and he stated he was concerned and gave me the referral to derm to have it removed.
he dermatologist took one look at it and told me it was Melanoma. It was about 1.2mm in size. He removed it in his office and then referred me to general surgery for a wide excision and sentinel node biopsy. The derm removal pathology confirmed Melanoma. The surgical procedure was completed less than a week later and the margins as well as the sentinel node were negative. I was never referred to an oncologist. The surgeon told me to follow-up with derm every six months for skin checks which I have done over the past 4 ½ years diligently.
Over the recent Labor Day weekend, I was in the shower and noticed a small bump to the left side of my groin. It didn't hurt so I wasn't overly concerned. I made an appointment with my Primary (same doctor) the Tuesday after the holiday. He felt it and told me he was concerned it may be a Melanoma reoccurrence and gave me a referral to a general surgeon to have it biopsied. The surgeon asked me when my last PET scan had been completed. I told him no one had ever requested a PET as part of my follow-up. Regardless, he requested a PET scan on September 21, 2010, and on September 23, 2010, I had two groin nodes biopsied. Up to this point I still wasn't concerned. Unfortunately the PET scan revealed several hot nodes in my left groin/pelvic area. The biopsies confirmed it to be Melanoma.
On October 19, 2010, I underwent a radical groin lymph node dissection. Of the 18 lymph nodes removed, half had Melanoma. My next step will be 6 weeks of localized radiation once I have healed from the surgery and the last drain tube is out.
I feel fortunate that I went to the gym regularly and otherwise am in good health. I am healing pretty quickly from the surgery. The Medical Oncologist has briefly discussed Interferon as well as a clinical trial. I'm trying to find out as much info as I can regarding both. I haven't read many positive writings on Interferon and the side effects. Will I be able to work while taking the year-long treatment? Is participation in a Clinical Trial to risky? I'm young with a LOT of life to live. I'm taking each day as it comes and am grateful at this point to live life in what we call "new normal."
Kimberli - May 2010
Hi, my name is Kimberli. I am a mother of 2 and a grammy of two who are my world! I am now 40 years young.
In 1999, I was at a friend's house when I noticed a little raised bump the size of a pencil tip. It was real shiny, but it itched, and it was the same color as my skin. I went on with my life - working and raising my children.
Approximately a year later, it was the size of the end of my pinky finger, still itched like crazy, but it looked just like a wart - white and scaly. It seemed to be a wart so I used a wart remover that didn't work.
I continued on and in 2001 my Boss told me to leave and get it checked out. Not having insurance, I went to the ER. They looked at me like I was crazy - in there over something so small. I felt kinda silly, too, to go to the ER with what I thought was a wart.
So, the doctor immediately told me it looked to be of no concern but since I was there and it was bothersome to me he would quickly remove it and I would be on my way. Back to my life I went.
Then, 10 days later, I get a call that I need to come in. Hmm, I was puzzled. Cancer was like not even a thought in my mind. I go and they tell me what they removed was Melanoma. Melanoma, I said, what is that ? They tell me it's skin Cancer. Ok, so you took it off. So, now I don't have it, right? Well, he said, everything we took off was cancer and we need a clean margin so they removed more... and it, again, was all full of Melanoma cells. And, again, until they finally got clean margins. But, the depth of the Melanoma cells was a concern to him and I needed further treatment to make sure it had not spread.
So, on with the Lymph Node study. They removed one and froze it in the surgery room. They didn't find any cancer cells. I was so relieved until I get a phone call saying pathology found Melanoma in it. So, back I go. They take 33 out of my groin area and all were cancer free.
I did 11 months of Interferon - 7 days a week. I was deathly ill from the toxins. During my 11 month they had to take me off of it because the toxins were too much for my body to handle any longer.
We are now in 2010. WHAT? No more cancer. I do, however, live with the fear of it returning. I still don't feel good and have not returned to work. I feel I was zapped of all my energy. I want what I had back and that was... a productive working Life.
One thing I feel that it's important to know about Melanoma is... it's not always red or black. Mine looked nothing like any Melanoma picture I have ever seen. It looked just like a wart. So, don't think it has to be red, black or dark-colored to be Melanoma.
God bless all who have had to deal with this Beast and to those who continue to fight it . I'm on your side. I pray for you everyday.
Mitch Brogdon - 2009
In July 2007, I was diagnosed with stage III melanoma. I never thought this would ever happen to a young adult, especially me! I turned 16 on August 1st, the same day I had my first surgery. Since 1 lymph node was found positive for cancer, I underwent a second surgery to remove 12 more lymph nodes. Fortunately, the next 12 lymph nodes were cancer free.
I underwent interferon therapy 5 days per week for 4 weeks and landed in the hospital for a week due to the toxin buildup in my body. I am now taking a smaller dose of interferon that is self-injected 3 times per week for 11 months.
I haven't been able to attend school first semester (I’m a junior in high school), but I plan to try to attend second semester.
Having just celebrated Thanksgiving, I realize that I have a lot to be thankful for. I am thankful that I am still alive and look forward to the end of my treatment and being told that I am "cancer free!"
I am also thankful for people like Jean Schlipmann and Aim at Melanoma, who provide a lot of support and fund research in hopes of finding a cure.
Danielle Dahm - 2009
In March of 2000, I was diagnosed with Stage III Malignant Melanoma - this is my story...
While pregnant with my 3rd child in 1998, I noticed a raised lesion on the back of my right thigh. I mentioned it to my family practice doctor. He felt it was possibly a growth due to pregnancy. Six weeks after I had my child, I went in for a biopsy around January of 1999. My family practice doctor looked at it and got on the phone with a dermatologist and described what he saw. He then told me he wasn't going to biopsy it and too just keep an eye on it. This spot was about the size of a nickel and was reddish purple.
Around January of 2000, I noticed the lesion was bleeding. I assumed I just nicked it shaving. But after a few weeks, it had not healed and was still bleeding. I went in a clinic in Germany and had a biopsy. Within a few weeks, I was called back into the clinic and told I had Melanoma. Within days, I was put on a plane to Walter Reed hospital in Washington D.C. I underwent surgery to remove the tumor and wide area from my thigh, as well as 3 lymph nodes in my right groin. 1 of the 3 was positive and I went in for a 2nd surgery to remove additional nodes. The rest of the nodes were negative. I also endured a muscle transfer and had to learn to use my right leg again. I was on crutches for a month or so and then a cane for another 6-8 months. I was at Walter Reed for 30 long days, away from my husband and 3 children ages 6,5 and 1. I returned to Germany to recover. A month later we moved to Washington state so I could get treatment at Madigan.
In June of 2000 I began a clinical trial of High-dose Interferon. The treatment plan was for 12 months of which I lasted about 9 months. I went in daily the first month for IV therapy. Then began self-injection shots 3 times a week. After about 8 months, I was down to 86 lbs and my treatment was stopped 3 months early. I had numerous side effects to include short-term memory loss. I still suffer with that today.
I was ready to announce to the world that this month I was 4 years in remission. However, a recent PET scan reveals that melanoma has most likely returned. There are several lymph nodes in both sides of my groin, near my stomach, liver and heart ranging in size up to 9mm. There are also 2 nodes in my neck which I'm having surgery to remove them today. Major surgery is likely for the nodes in my right groin since they did find cancer there 9 years ago.
We can never feel we are in the clear with this beast. We must be diligent with our check-ups! Cancer will not take away my spirit for Life!
Holly - March 2010
Hi! My name is Holly. I'm a 32 year old Stage III Melanoma Survivor. I was diagnosed with Malignant Melanoma in August 2009 by my dermatologist.
He did a punch biopsy when I showed him a reddish and irritated mole I had on my hip. Not only am I fair skinned and red headed... but I have always had quite a few moles.
Initially, I just thought this mole was getting irritated because it was located right where my jeans came up to, so I just thought that was that. I had actually had the same mole checked out by another dermatologist a few years earlier, and she said I could have it removed if I wanted but that it wasn't malignant.
I decided to live with that ugly little thing... hmmm, so I guess it's composition changed or whatever. Coulda, shoulda, woulda... but hey, here I am, with some super cool battle scars!
I had my left love handle removed which was the area surrounding the tumor. In that same surgery, my doctor biopsied my sentinel node, and yes - although they said 90% chance that would be IT - the little 10% won... cancer was found in my sentinel node. I had the second surgery in my groin where 10 lymph nodes were removed. Luckily, no more cancer was found!
Next, they told me my only treatment option would be interferon. Without the interferon treatment, I would have a 60% chance of it coming back or with the Interferon its only 40%... hmmm.
So, I started my interferon nightmare. It's hard to speak of something that I think is supposed to help me, but that I feel is an evil poison, and I fear injecting it ever again. I did the one-month high-dose. That wasn't so bad, but I would definitely do that still, if I had to relive this all over again. It made me so tired and weak but thanks to my parents and family friends, all I remember is riding to and from the hospital to get my treatment, sleeping, trying my best to eat something...anything... and then sleeping, and oh yeah- writhing in pain from headaches and muscle aches. But really I was so tired, I slept off most of the worst side affects. ALSO, I was not working at that time.
I took a leave of absence from my beautiful bilingual 1st grade geniuses at PS 333. It was hard to leave work, so after the high dose, I tried to go back...ha ha!! That didn't work out. I started an even lower self-injected dose in Jan 2010 but I still felt like I was losing all control of myself and everything around me. I really couldn't handle it, mentally or physically. I couldn't work, I was sooo tired, but I just couldn't sleep. I couldn't just go out and have fun with my friends except maybe every 10 days or so, and sometimes that stuff had me so anxious I was afraid to leave my house. (TOTALLY NOT ME!)
Every person is different. I've heard of some people making it through the whole year. However, its mental affects are just too much for me. Especially considering that I was trying to do it all alone. I had family help me through the rough parts, but they were traveling from out-of-town to do so. I have amazing friends, but cancer and its treatment are a whole other world. You can't expect friends to be able to literally TAKE CARE OF YOU, because they have their own lives.
I really think the interferon thing needs to be REALLY CLOSELY monitored and is not something to be considered lightly. I think each person needs to consult several doctors before starting this treatment. Although I had a great oncologist and surgical team, it's this Interferon that I hate!
Now, I don't recommend this, but I just quit taking it... I'm meeting with another doctor, and will see if he recommends that I go back on it, or if I can stay off. But, although I definitely fear that it will recur (at around a 50% chance) I would rather be ME than lose my mind, memory, or suffer from constant fatigue.
We shall see... my story is not over yet. I hope to report back with good news soon! I am sure missing out on this snowboarding season, but I had a clear scan in February 2010... so, hopefully next year I'll be back on the slopes.