Addison's Army Against Melanoma

Rob’s Story

Russ Tyndall — Thu, 23 May 2013 15:42:08 +0000

This is the story of: Rob Gerold

I am stage IV melanoma. 49 years old with a wife and 5 kids. We live in New Jersey.

Feb 2010 my wife discovered a pencil eraser sized mole on top of my scalp. Tests confirmed it was melanoma.

July 2011, tumors were seen on my liver.

Oct 2011, I went through TIL study/treatment at NIH in Bethesda MD. Since then my tumors in liver remain stable.

Although no shrinkage of tumors, Docs are pleased with my current health condition…I return every 3 months to NIH every 3 months for blood work & various scans.

That’s my story in a small nutshell!

Thank you for this opportunity to help spread melanoma awareness.

Rob Gerold

WARNING: GRAPHIC PHOTO – USE DISCRETION WHEN CLICKING TO OPEN

Lynn’s Story

Russ Tyndall — Tue, 21 May 2013 20:01:30 +0000

This is the story of: Lynn Luckeroth

My melanoma started on my neck originally and was found in 1991- It appeared like a oblong flat freckle about 1 inch long.I had it removed along with every mole on my body. It returned in same place about 4 years later, this time looking like a dark purple blister like thing .It was about the same time my son Shaun was diagnosed with Desmoplastic Small Round Cell Sarcoma in 1996 and I was too busy fighting for his life to deal with my little spot. He was 16 when he passed away in 1998. I ignored mine for awhile due to my son’s death and my divorce.

In 2000 had it removed again along with 5 sentinel lymph nodes just to be sure. The purple looking blister was removed and the diagnosis was Malignant Melanoma. Clark’s Level 3. Tumor Thickness 1.45mm. The plastic surgeon said he got it all and that my lymph nodes were clear. He said I had nothing to worry about and sent me to the oncologist. The oncologist said there was nothing to worry about and did not recommend further treatment.

In 2009 I was experiencing shortness of breath, tired easily…local primary doctor said I was getting old and nothing was really wrong…I had experienced a concussion in January 2009 and they thought perhaps it was post concussion syndrome…I felt something was seriously wrong and went to ER…they did a EKG and a chest x ray and they saw a mass pressing against my superior vena cava…my primary doc calls me and says it’s not good news and it’s not bad news but it’s probably melanoma or sarcoma. They were dragging their feet setting up appointments so a couple days later my husband got me an appointment at Mayo clinic. The oncologist set up my appointments and we met with the surgeon. Cutting a 2inch slot in my neck they did a bronchoscopy and was able to nibble at the mass. It was at the crossroads of my heart and my lungs. it was considered inoperable due to the location of all the major blood vessels and arteries. The news was- Stage 4 melanoma.

The surgeon said he was sorry and my oncologist said she was sorry. I was told I had 6 to 9 months to live and nothing could be done. They offered me treatment to prolong my life few months- Temodar and 2 weeks of radiation. No one mentioned or offered me a clinical trial . I said Bull Sh** and went on my way to find me some trials!

The radiation and Temodar held things stable, but as forewarned I progressed after about 5 months. I thought I had more time…I had researched and contacted a trial in Seattle and was going to Seattle for a T cell trial…the only drawback was TIME; they needed to clone my T cells for 4 months. They did aphaeresis and took my T cells. After taking my T cells I went home to wait, but a week after coming home I had my PET and found my melanoma was growing again and the SUV more than doubled from the previous scan the month before. I called Mayo and set up another appointment. I know the surgeon previously said it was inoperable and decided I was going to argue my case to the surgeon again because I had nothing left to lose. I had read about mediastinal surgeries being preformed successfully in other cases so I took my internet printouts with me. I was surprised how easy it was. My oncologist said she would talk to the surgeon and set up another appointment for the following day. The surgeon agreed. The melanoma was pressing against the superior vena cava cutting the blood off to the top half of my body. On Friday, March 26,2010 they removed 3 lymph nodes and one contained a 6.8 centimeter melanoma tumor with a thoracotomy; he also did wedge resection on a spot they were uncertain if it was melanoma or not. It was only a wayward lymph node and benign.

It was an awful surgery with assorted tubes coming out of my body. The needle in my spine was causing my left arm to hurt and turn gray. They finally removed it on Saturday at my request. I was clinging to the Oxygen mask for dear life. They were afraid I would need to go home on oxygen. To say I was in pain would be an understatement- I was in hell and I just wanted to go home and deal with it. I actually left the hospital and went to the hotel across the street on Sunday, 2 days after having surgery. I think the surgeon and the pain management group said it was the shortest stay Mayo ever had after a thoracotomy. I was determined to leave that place! My husband and I hung around the hotel until Tuesday because of my appointment with the oncologist. We then drove the 8 hour road home back to North Dakota. I was in so much pain. I didn’t need oxygen, but the coughing made the pain much worse and it was also a natural response to the surgery. It brought up blood and mucus. I felt fluid leaking from my chest tube hole. I had several weeks of sleeping and living in a recliner.

Mayo offered me Leukine injections after my surgery. I was told there were no trials for the surgically resected because they all needed measureable disease and I just had mine removed

I got back on the internet and found a trial at the NIH. I e-mailed and attached my copies of my medical records. I went for an assessment and was told to return in a few months with my melanoma returned. They said the trial I was assessed for would not be aggressive enough.

Seattle wanted measurable disease but did say they would freeze down my t cells until I need them. I searched the trials daily for a immunotherapy trial. I found Dr. Jeffrey Weber’s trial using BMS’s Anti PD-1 trial for people who were recently made NED by surgery. The trial was the first of its kind. My hope was that by having less melanoma the easier it would be for the immune system to kill off any remaining melanoma cells. Well I guess it worked! I have been NED for 3 years and just finished my 30 month trial.

Nathan’s Story

Russ Tyndall — Thu, 16 May 2013 19:35:01 +0000

This is the story of: Nathan Jones

Hi all. My name is Nathan Jones an educator from Melbourne, Australia, a husband and a father to three gorgeous girls. My story begins in March 2012. I am an eager fitness fanatic and cyclist who has raced regularly on the criterium circuit and triathlon scene. I have raced regularly on the criterium circuit and triathlon scene.

Back in March 2012 I got back from a long ride and felt sore in the chest/armpit area when I felt this area I discovered a lump. Immediately I was alarmed and booked into the doctors. From here I had scans, which didn’t show enough, a week later I had a biopsy. This was painful and the bruising was ugly, apparently this is common with melanoma.

Later that week, I went back to my GP who broke the tragic news to my wife and I, that I had Melanoma. My GP was awesome she had gone and put appointments in place for that afternoon with my now new best friend the Oncologist.

To put things in perspective, I am and have never been a sun baker; I just keep active in the outdoors.

I remember leaving the GP and sitting in the car park balling my eyes out and thinking the worst. My wife and I left the car park and headed to my work, why we went there I couldn’t explain. We went into an office with my principal and told him the situation, he was positive and at the same time devastated for us, but supportive. I was teaching Year 5 at this time and didn’t feel the need to tell them yet. This was the same for our girls, who are 6, 3.5 and 1.5.

After leaving school we went to the oncologist. Who explained the next few steps in this scary progress? He looked over my body to find the source of the cancer, but he couldn’t to this day he still cannot find the primary source. He diagnosed me as Stage 3A. He sent me to have a PET scans the next day to
determine if there was spread. I had my scan later in the week and all day on my own, by choice.

Once the scan was done I left the car park praying that nothing had spread. The oncologist rang within minutes to tell me that nothing could be seen anywhere else. I just pulled the car over and cried like a baby. I rang my wife and did the same thing cried to her with joy.

I still needed surgery to remove the left lymph nodes this was scheduled for later that week. The surgery happened and all 17 nodes were removed. Results showed only 1 of the 17 were affected with Melanoma. Relief to say the least! This meant no treatment was needed, this is important to note as I am now wishing I had treatment of some sort.

I had a very short stay in Hospital and sent home with a drain bag for the wound. This was not an attractive look.

My surgeon was happy with the surgery. As was I, neat cut and no issues. Home in two days I was rapt to be back on the bike and running a week later. I felt great.

My life seemed back to normal, Working hard as per usual, presenting at Conferences and other schools, this is something I do on the side as an Apple Educator Consultant. I was feeling human again. Not someone with Cancer. I made sure I kept myself fit and healthy and didn’t see myself as a Melanoma Cancer patient. Scans from here on were every 6 months and check ups more regularly.

This brings us to October 2012; my/our world was turned upside down once more, this time with worse news. It was the Monday after the AFL grand-final (Australia’s version of the super bowl). My team (hawks) was playing and I was lucky enough to get a ticket. The hawks started off really well, I was quietly confident, and thought we’d win. Unfortunately it wasn’t to be, I was devastated and went off to a mates for a few beers to drown my sorrows. To add to this I was due for my 6 month scans on the Monday. I was feeling great, we’d just got back from an interstate family holiday were I also did a presentation to 50+ educators on how to use an ‘iPad effectively in Education.’

Monday came and I headed off to The Epworth Hospital for the scan, I was apprehensive as all I wanted to do was get to 6 months with all clear and a tick of approval from the oncologist. I was trying very hard also for the coming tri season. I had full body CT scans once finished; I headed home to spend time with the girls on my last week of holidays. Lisa (my gorgeous, supportive wife) went off to do some shopping and left the girls with me.

Later that day my oncologist rang me and made up some ridiculous story that he needed to swap my Wednesday follow up appointment to that afternoon. I couldn’t leave until Lisa arrived home and we both went into the oncologist, we arrived. I was sketchy about why I was there Lisa was more optimistic. We walked into the office, he said, “Its not good news, my scans came back not good.” He said he couldn’t tell if I had 4 or 5 brain tumours and he wanted to put me in hospital that afternoon to reduce the swelling and determine the next approach. Lisa and I were devastated. I thought I was done with all tumours. I hadn’t even had that chance to say bye to my girls, this hurt most of all.
I went to the cancer ward and booked in. I felt fine and had no idea that I was riddled with tumours. I spent that week in hospital reducing the swelling. It was lucky that I was in hospital as I had a bleed on the brain later that week; this moved everything forward by a day. I was transferred to the city for immediate surgery they removed the bleed and two of the four tumours, a few days later they removed one more tumour and left the smallest one.

The journey began that week. Our life’s changed forever, I had gone from riding 200km a week and running 15km per week to bed ridden and relying on nurses to wash me and to use the toilet. My girls saw me in hospital at my worse, couldn’t talk/walk properly and with a very nasty scars on my head.

I was transferred back to my original hospital about 4 weeks later and spent another week here in rehab.

After which I was sent home, my life was know where near back to normal. I was at home and in agony in my bowel area. Food was hard to digest and pass which made sitting very uncomfortable. We went back to the oncologist who sent me to have scans, which confirmed tumours in the bowel. I was once again booked in for surgery. I couldn’t miss a trick and had bowel surgery that week. It was painful and now I was starting to look like something out of a horror movie scars everywhere.

I am now Stage 4C and not happy about it. My life has literally been turned upside down. Cycling is a passion and I am lucky enough to be doing it but not at the pace and fitness of before. I have spent a month in hospital and don’t really want to be back there. I had radiation treatment to shrink the last tumour in the brain. I am now on a new drug to reduce the tumours and slow the mutation. It’s called Dabrafenib.

After four weeks on the drug I had scans and had an 80% reduction in Tumours, the one on the brain is gone as are the two that I had in the bowel. I feel good and no side effects from the drug, just fatigue. But this could be a result of riding and being on holidays with the kids.

I am back teaching fulltime as of January 2013, I am also riding about 125km a week and all of the treatment seems to be working. The energy levels are low by the end of the week. I feel great and finally my hair is growing back. On the 1st and 2nd of May I am will be riding in the Tour de Cure ride for two stages as a guest rider. Raising money and training has been successful. It is great to be alive and enjoy special moments, such as my eldest first day of school and the birth of my brother’s first child. The many opportunities I have had to do things since being diagnosed have been unbelievable; I have been on the Radio to spread the sunsmart message and tell my story to add to this I have been in the press doing the same thing. Marched in the March for Melanoma fundraiser, my team of 50+ raised $5200 for the event.

I also have an ongoing blog that might give more of an insight to my story and journey: http://melanomathletecyclist.blogspot.com.au

Bennie’s Story

Russ Tyndall — Wed, 15 May 2013 23:10:50 +0000

The story of my husband: Bennie Lunsford

The melanoma journey began 8 years ago for us. We were newlyweds, and married for 4 months when the mole on his upper arm began to bleed. I made an appointment with the dermatologist, and it ended up being superficial spreading melanoma… only about .9 mm thick… but ulcerated. After surgery at MD Anderson, all of the lymph nodes tested were negative for melanoma. We continued for follow-up at MD Anderson for 5 years, and a local dermatologist every 6 months after that with every appointment being normal. We had put melanoma behind us, and we thought we had dodged a bullet. Our life was just perfect with my husband getting the job of his dreams, and having 2 perfect children. Our oldest is a girl, 6, and a boy, 3. January 2013 rolls around and my husband finds a mass on his hip when he wakes up. We chalk it up to a tight muscle, and a week goes by with no change. Eventually after Dr.’s visits we find out that it is melanoma… now stage 4. We were completely shocked… how could melanoma return after 8 years of nothing? How could this be happening to someone so young with such young children? My husband didn’t deserve this. We go back to MD Anderson, and get started with treatment right away. My husband started Hi Dose of Interleukin right off the bat. He also had surgery before being admitted for TIL harvesting as a back up plan in case the IL2 didn’t work. IL2 was rough, and the hospital stays away from our children were challenging. Two months after starting IL2 we rescanned to see how things were going (that was 4 weeks ago). Scans showed progression. Not only a little progression… but a lot. He had it in his lungs, liver, hip bone, and muscles. They also told us the TIL cells never grew so that treatment was off the table. He tested BRAF positive, and was started on Zelboraf immediately. We left that appointment as shocked as we were in January. MD Anderson also wants to start biochemo in a couple of weeks while switching off with the Zelboraf. We are worried about biochemo. We have heard how rough this can be. We will do anything to get him NED (No Evidence of Disease). For now the zelboraf is working to shrink his tumors. It also is preventing him from going outside at all, and he feels like an old man with joint pain. We have learned that if you look too much into the future it can be overwhelming and difficult to process. Truly it is best to live day to day. We take each day for what we have, and we make the days he feels good count. We know it will be a long road ahead, but we know that the destination will be NED!! Our biggest challenge right now is just preserving our children’s innocence of having to deal with their father having cancer. We try and tell them as much as we can without them having to worry. When my husband first got diagnosed I scoured the Internet for as much information as I could. One of the most helpful things that I came across was other melanoma warriors’ blogs. I met some great people, and found invaluable information in the many blogs that I read! I started a blog about my husband’s journey thus far at lunsfordsmelanomajourney.blogspot.com so that others may learn about how treatments work, and some of the side effects that happened. Also, it helps to know how other families are dealing with it too. One day we will have a cure for melanoma, but until then we fight for the cure… and try out treatments that may benefit future patients.

Richard’s Story

Russ Tyndall — Tue, 14 May 2013 23:06:56 +0000

This is the story about my husband: Richard

Richard turned 50 in January and has been battling Melanoma for over 2 years. Richard is a physician and has been in practice in Florida as a primary care physician since 1994. In August 2011 we were on vacation in Jamaica and Rick noticed a dark area under his big toe nail. We had been in Dunns falls and thought maybe he had banged his toes. By the time we got back home and caught up in the office the spot had disappeared. In December he felt a lump in his groin and didn’t mention it to me. He thought it was probably a hernia. In early January he finally talked to me about it and I immediately called a surgeon and got him in ASAP. They did an MRI and a biopsy. Normally another doctor calls Rick with results as a courtesy. So when I got the call from his office asking us both to come over once he was finished seeing patients I knew it was bad news. My hubbie’s friend had him strip down to nothing and did the most thorough body screen I have ever seen. He found nothing which is not uncommon. 2 weeks later Rick had a lymph node dissection and a tendon muscle relocation to cover the artery that had been exposed. He then had radiation to the area and once recovered from that immunotherapy. His PET scan showed only activity in the groin so we did all of this as a precaution we thought. 6 months into Ricks immunotherapy he started having odd tingling and dizziness which was attributed to the treatment. One night we ended up in the ER due to confusion. The CT came back normal and his labs showed he was extremely hypothyroid. He seemed to get better and then worse until early January while in the office seeing patients he told me he was having a hard time writing. I called his oncologist and rescheduled his afternoon apps. This time the MRI showed a large tumor on his motor cortex. It took a couple weeks to get him cleared for surgery. We were told he would probably never walk without assistance. The doctors had no idea who they were talking about. Rick was an avid wake boarder, surfer and he plays guitar to relax. Not only did he get complete function back but he was back behind the boat by summer. Everything was fine until July when a follow up MRI showed 2 small tumors in the temporal lobe. This time he had gamma knife and continued to work. In August he started Yervoy. The day after his first infusion he walked out of a patient room looking confused. As scary as what happened next I’m thank god everyday I was there. He had a grand mal seizure in the hallway. I was able to pin him to the wall and scream for help. We were able to get him to the ground and keep him safe as he seized. The EMT’s loaded him up and took him to the hospital as he was not coming around. He spent a couple days in the hospital and a day at home resting. He went back to work and worked during his Yervoy treatments until November when he became yellow and had liver failure. He continued to work part time and recover from the complications from Yervoy. In January the seizures became uncontrollable and he was in and out of the hospital. His motor cortex tumor bed had a bleed and melanoma is a bloody tumor but that site was stable so we waited and watched until February. February 2 he wasn’t himself. He got up with me and the kids and then said he wanted to stay home while I took the kids to school. When I got home I found him on the floor with right sided paralysis. Back to the hospital and the MRI showed a large bleed around the motor cortex. He eventually was sent to an intensive rehabilitation facility but instead of getting better he continued to get worse. His Neurosurgeon did not believe him to be a surgical candidate for a couple weeks. I felt like we were loosing him. He had already lost control of his right side and now he was unable to speak. Neurosurgery finally reviewed the many CT’s and MRI’s of the brain and decided that there must be tumor. In early March Rick had a second craniotomy. I was told he would not regain any function and would not be able to talk. We are now 3 weeks out from surgery and Rick is talking although his short term memory is not very good he continues to improve. He has movement in both his right hand and right leg. He is still bed bound at this point but he is making great improvements everyday. During the last year Rick was very open with his patients and diagnosed 2 cases of Melanoma early. Both of those patients are currently NED. His story is one of determination and support. He is determined to continue to do what he loves, whether that is taking care of his patients or sitting on the dock and watching the sun set. As of today it doesn’t look like he will return to seeing patients but you never know and he will never give up. I hope and pray that this story helps someone. Thank you for spreading the word.

Richard with daughter, Prom 2013.

Theresa’s Story

Russ Tyndall — Tue, 14 May 2013 22:55:38 +0000

This story is about our youngest daughter: Theresa

We have had been taking her to a Dermotologist since she was about 13, and has had several suspicious moles removed over the years, all came back normal. In August 2010 Theresa, at 23, started with a mole that changed color, shape and bled on her left upper arm while pregnant with their son Ethen, (Her husband Anthony was in Afganistan with the Marines during her first surgery). Her family doctor took a biopsy of the mole and called her two days later with a diagnoses of Invasive Melignant Melenoma. The whirl wind ensued. LMH delivered Ethen 10 days early. Then the Comprehensive Cancer Center—James Cancer Hospital and Solove Research Institute (OSUCCC—James) at The Ohio State University preformed brain surgery at the beginning of October, which gave her some time to bond with Ethen and heal. Lymph nodes were also removed and they deemed her “cancer free”. A year later she had seizure at work. It had metastatized in her brain with 2 tumors. The James removed one tumor, but the second was too deep to get at. They did gamma knife on the 2nd tumor and started her on chemo pills (timidar (sp?))the only medication that will break the blood brain barrier. 6 weeks after her surgery she was having pain in her back and numbness in her legs. The James found another tumor in her spinal column. She had 10 rounds of radiation for that. Ethen went through 2 years of blood tests every six months to make sure it didn’t transfer to him. He will be 3 in September and is a happy, healthy, typical boy. Teri (as we call her) went back to work part time as a General MGR at the restaurant about 3 months after her brain surgery and full time after about a year. Come September 2013 she will be on the Chemo pills for 2 years. The doctors said her immune system is working very well with them and decided on the extra year. She is finally off the steroids which she has been off and on for the last 2 years (the weaning process didn’t go very well). Teri still takes medication for seizures even tho she has not had one since the first one. She sees her Dermatologist every 3 months, and has had several more spots removed (pre-cancer and basal cell), the Oncologist every 4-6 weeks, and the Nero-oncologist has moved her out to every 4 months! That is a great step so far! The two remaining tumors, they say, are just hanging out, with very slight shrinkage of the one still in her brain. But neither are growing and no new ones showing! The doctors have advised her not to have any more children for fear of the hormones feeding the cancer again. She has handled everything with such grace and courage and accepts pity from no one! We are so proud of her!! As a family we spread the word every chance we get. So many think skin cancer isn’t a big deal and we try to educate them the best we can about the seriousness of it. The James is offering a free skin cancer screening this May (skin cancer awareness month) and we have several of our friends and co workers signed up to go! We are also to begin training for the Pelotonia in Columbus on 8/9/13 to help raise money for research. We hope to ride at least 25 miles, which is the shortest part of the ride. Teri’s back may not make it that far but she wants to try! We follow Addison’s progress and rejoice in all the the good results and hope and pray for the best with all of her results.

Teri & Anthony at the 2009 Marine Corps Ball, one year before cancer.

Teri, Anthony & Ethen, 2012 at the Columbus Zoo after cancer.

Madison’s Story

Russ Tyndall — Mon, 13 May 2013 21:52:04 +0000

Madison’s story told by her Mom: Marion

Melanoma??

If you follow my blog on Facebook, you know that 2013 has already been a challenging one for our family. I withheld the details until we knew with what we were dealing…

Melanoma… it sounds scary, right? I have to be honest, I never realized how scary it is until now…

I know this is a long post, but please take the time to read it to the end. Armed with information on Melanoma, you just might save your life or someone else!

This beautiful 20 year old young woman has Melanoma. Thankfully, it appears we caught it early, but she will always be at risk for recurrence and must be vigilant with skin protection and watching for signs and/or symptoms of recurrence. If you thought melanoma only affected older people, you are mistaken! It is on the rise in young adults..our daughter is living proof

Madison is an equestrian and has always spent a lot of time outdoors. Additionally, she would tan periodically prior to special events. We have always pushed the use of sunscreen, but I wish we had been more adamant, and I wish I never signed the release for her to use a tanning bed. In the horse world, everyone spends much of their time outdoors. I’d like there to be more awareness targeted at equestrians on how to best protect themselves and lower their risk of skin cancer. Professionals in this industry are exposed to the sun’s rays several hours every single day. Anyone with that much exposure should take extreme caution when it comes to protecting themselves from skin cancer. And no one should ever use a tanning bed!

On January 3rd, our beautiful daughter, Madison, went to the dermatologist to have a mole checked. She first showed me the mole in May of last year, and it didn’t look like anything other than a mole. When she came home from college in mid November for winter break, I noticed the mole looked bigger. Upon closer inspection, I noticed it had funny looking borders and wasn’t symmetrical anymore. Now it looked scary! I called the dermatologist’s office right away, but they couldn’t get her in until January!! We went about the holidays not thinking much more of it, and then on the day of the appt the doctor alarmed us!

The doctor did not like the looks of this mole at all, and scheduled surgery within the hour! She removed the entire mole and a good amount of tissue surrounding it and sent it off “stat” to be examined for skin cancer.

We left the office dazed, and Madison’s leg bandaged, scarred, and sore. We didn’t understand the big deal. It’s skin cancer – you remove it and it’s gone… right? WRONG! So we waited, and waited, and waited for the results. Madison went back to GA for the winter quarter just a couple days after surgery, and we waited some more! Finally, after 2 weeks from the actual surgery date, Madison called the office for the results…

On the afternoon of January 17th, my beautiful baby girl called home to explain she has melanoma and has to drop everything to come home for surgery. WAIT! WHAT?? Why did it take so long to get bad news? I always thought bad news traveled quickly! Not necessarily when you are dealing with melanoma…

Because of Madison’s young age, the original pathologist wanted to be sure of his findings. He sent her tissue to Cornell for verification, which is why it took so long. Armed with the pathology report, the doctor explained the cancer extended down 1.58mm, which is considered an intermediate depth and cause for concern because it could have entered the blood stream and traveled to other parts of her body. Therefore, they needed to take more tissue from her leg (the site of the mole) and do a sentinel lymph node biopsy to see if the cancer has spread. The consult with the surgeon was already set for Tuesday and our heads were spinning!

Let me tell you, we have been through a lot (read more here if you like), but this was the most difficult call I have ever taken in my life. My beautiful, sweet girl is just 20 years old and 5 hours away. She had to hear she has cancer…and I’m not there to give her a hug. It was torture! We cried on the phone, and I told her it would all be just fine. She would come home, have the surgery, and then go back to school and move on. It couldn’t possibly have spread to any other parts of her body already! It’s skin cancer! They remove it and that’s it…Little did I know about melanoma….

I decided right away we were driving to Savannah to pick her up. So, I called Don at work and gave him the news and told him we were leaving in the morning. Then I called the college and explained the situation. The school was wonderful and said they’d like to meet with us to arrange some accommodations with Madison’s professors. They fit us in for the next day while we were in town to pick up Madison.

After meeting with the school, and ensuring Madison would have a 14 day extension on all of her missed assignments and tests or quizzes, we had some lunch and got on the road for home. This was on a Friday. Madison didn’t have an appt until Monday. She was scheduled to have a skin check with the dermatologist to look for more suspicious spots (If you’ve never had a skin check, please schedule one now if at all possible – it might save your life). In the meantime, I made it my mission to learn more about this cancer. I started searching google….

Google is a wonderful tool I use every day, but as most doctors will agree, it is not necessarily a good thing when you have a medical concern. After reading many horror stories about melanoma and learning how quickly it can spread, I was worn out, crying, and had a very bad feeling about what we were facing. I changed my approach and started searching melanoma survivor stories. This is where I should have started. Just knowing that people do survive, even the late stage (albeit rare), was the hope I needed. Of course, we wouldn’t know Madison’s stage until after surgery, but I needed to know the what ifs… If this thing had spread to her lymph nodes I needed to be armed with information to support Madison and make her feel comfortable with what she was facing.

I learned that melanoma is something to which everyone needs to be more aware! I am 45 years old (shhhhh don’t tell anyone! let’s just keep that between us, k? k) and knew of melanoma before this, but I didn’t know what I didn’t know about this horrible cancer. And what I didn’t know is just how deadly this cancer is! Like many cancers, it is best to catch it early before it spreads. When melanoma spreads (and it can spread quickly) it is very difficult to treat. As a matter of fact, the normal chemo and radiation doesn’t work all that great on melanoma. If the surgery revealed cancer cells in Madison’s lymph nodes they would have to do yet another surgery to remove the rest of the lymph nodes in the area, which is typical of most cancers, but after the not so nice recovery from that surgery, the patient is then treated with an immuno-therapy drug that basically gives a boost to the immune system to help it in fighting the cancer. It is very toxic to the body and makes most people very sick, not unlike chemo. Unlike chemo, it does not kill the cancer cells. It hopefully helps your body do that. It is administered 5 days a week for the 1st month and then you give yourself several injections for 11 months after that. It can be so debilitating that many people never complete the treatment, and the treatment has very little affect on recurrence. I was also surprised to learn that radiation has not proved effective on melanoma either, as Melanoma is mostly radiation resistant.

Madison’s surgery was scheduled for Friday, January 25th at 10am. She had to be at nuclear medicine at 8am to have a radioactive dye injected into and around the site where the cancer was found. This dye would then travel through her to the lymphatic system. The first lymph node it reached is identified as the sentinel node. During surgery the doctor uses a Geiger counter to locate the radioactive material and remove the sentinel node. After removing the sentinel node they would send that off to be tested to see if there are any cancer cells present. The dr also needed to remove more tissue from Madison’s leg at the site of the mole. Although the margins of the first surgery were cancer free suggesting they got it all from that area, there were still portions of the mole at the margins. Seeing as this mole has already proved to be unfriendly, the dr wanted to remove more tissue in hopes of getting the rest of it out of her. We were able to take her home that day. She had a ginormous scar on her leg just above her knee and she was very sore, but she was eager to get back to school and left on Sunday, just 2 days after the surgery, to make it to class on Monday.

While she was home, I worked hard to keep everything together and not think the worst, but once she was gone I had a hard time doing that. I cried a LOT. I tried to stay positive and am so thankful to always have many many good people surrounding me with positivity, but any little thing would bring on the tears. It was a stressful few days waiting for the results, and we didn’t expect the results until the first of February! A full week after the procedure! So I was thankful when it came sooner….

The best call I’ve had in a long time came the morning of January 29th when the surgeon called to give me the good news. They did not find any cancer cells in the sentinel node! As far as they can tell, Madison is cancer free! She will need to be monitored by an oncologist and have her skin checked every 3 months at the dermatologist’s office, but other than that she can continue as normal! Praise God! My beautiful girl has been through so much in her young life, I just couldn’t imagine her having to endure any more. She is such a strong person as a result of everything she has had to overcome; she amazes me everyday.

This experience has been an eye opener and very scary. I knew this was serious because of the urgent way the doctor was handling it (thank goodness!), but I had no idea how scary until I started my research. Why is that? Why didn’t I know this about melanoma?? Melanoma is a skin cancer to which we are all susceptible! Shouldn’t we all be armed with information to better protect ourselves??

YES WE SHOULD!!! Which is precisely why I’m writing this post!

I want to caution that I am NO EXPERT on Melanoma – not by any stretch of the imagination. I have just begun learning about this disease, and I know I have a lot more to learn. Please do your own research and learn more about Melanoma so you can protect yourself and your loved ones – specifically your children. Protection from this horrible cancer starts young. We need to protect our skin AND our children’s skin from the sun at all times to prevent melanoma. NEVER tan in a tanning bed/booth AND NEVER give your consent for your child to tan in a tanning bed/booth. Always protect your scalp with a wide brimmed canvas type hat, and ALWAYS slather you AND your children with sunscreen. No matter where you live… if it’s cloudy or rainy… sunscreen should always be applied generously all over, even under clothing, EVERYDAY before you or your children go outside.
No exceptions!

This is the sunscreen we use for protection. This is a broad-spectrum sunscreen, which means it protects from both UVA and UVB rays. The higher SPF does not provide better protection – it provides longer protection. Be sure to use at least a 30 SPF sunscreen. This is a good sunscreen if you are going to be outside for long periods. To calculate how long the SPF will protect, you need to determine how long it takes you to burn and multiply that by the SPF. For example, if it takes you 15 mins to burn and your are using an SPF 15 then you will be protected for 225 minutes – which is 3 hours and 45 mins. Keep in mind reflective surfaces such as water and sand will decrease the SPF effectiveness by 40%! So be sure to figure that into your calculations. Additionally, reapplying the same SPF will not protect you! If you’ve been out in the sun for 3 hours and 45 minutes wearing an SPF 15, you will need to now apply an SPF 30 to extend your time by another 3 1/2 hours. Also, if you are sweating or are in the water you will need to reapply often. This, in addition to shade, and a hat, should keep you well protected. Go to melanoma.org for more information about Melanoma prevention and sun safety

If you have been diagnosed with Melanoma or you are out in the sun daily, you might want to invest in UPF clothing to add an extra layer of protection. Also, a hat like this one is a must to protect your scalp!

Melanoma is now the most common form of cancer for young adults. Like many types of cancers, if caught early, Melanoma is curable. The prognosis worsens significantly as it grows deeper into your body and affects your vital organs. Your best defense is knowledge and skin protection. Get your skin checked by a dermatologist on a regular basis. Wear sunscreen everyday! Be sure to get a sunscreen that protects against UVA and UVB rays. The higher the SPF the longer it will protect you from the radiation, but reapply often if you are out in the sun for a long period of time. Pay attention to your moles and have them checked if you notice any changes! Melanoma can occur anywhere on the body, including places sight unseen. It usually appears on the trunk, neck, limbs, fingers, and toes (so check between your toes folks!), but it can form in your eyes, scalp, belly button, private areas, muscles…anywhere! People with fair skin are especially at risk, but anyone can get it. Be aware and protect yourself from this deadly cancer.

Something else of which you must be aware is your family history. Heredity does put you at a higher risk. Get familiar with your family’s medical history. I am not close with my father’s side of the family and had no idea a cousin of mine passed away from Melanoma over 20 years ago at a very young age. I’m so disappointed in myself for not inquiring about our family’s medical history. As a parent it is my duty to know these things, and I will be asking many more questions as a result of this. I encourage you to do the same.

Related post: Vitamin D Deficiency and Melanoma – is there a link?

This info bears repeating: DO NOT, under any circumstances, use an indoor tanning bed/booth. You are subjected to high doses of uv radiation which has proven to cause melanoma. It’s not worth it folks!

Please share this post with everyone you know. Pin it on Pinterest , share it on Facebook, Tweet it, however you choose to pass it on doesn’t matter, just please pass it on so we can educate folks on this very scary cancer that just might be lurking inside you or someone you know! Save a life!

Learn more about Melanoma at www.melanoma.org.

Mike’s Story

Russ Tyndall — Thu, 09 May 2013 15:29:38 +0000

Story submitted by guest blogger: Vickie Scraper

My husband was being treated for melanoma when we met. He didn’t tell me right away, but eventually it had to come out as we were spending more and more time together. It didn’t really scare me at that time. It seemed like it was “under control.” He gave himself injections of human gamma interferon, an experimental treatment in 1990. He had already had the surgery to remove the cancerous area – on the surface a tiny mole about the size of two pin heads, but underneath, 9cm deep and about 6″ across his chest. The treatments finished, and that was that…or so we thought.

We got married in 1991, March. In December he was moving some equipment at his work place and felt an usual “pull” in his back. We treated it like a pulled muscle – rest, heat, cold, rub. It continued to worsen. He wouldn’t go to the doctor to get it looked at. However, by the end of March of 1992, maybe first week of April, there was an obvious protrusion in his lower back. I convinced him to go get it looked at. The regular doc was out that day and the intern said it looked like a severe muscle strain and put him on relaxers and sent him home with a follow-up appointment in a couple of weeks.

Needless to say, the medicine didn’t work. The protrusion was still there when he went back to the doctor at the end of April. This time, the doctor was in and nearly had a fit when she saw his back. In fact, she sent him straight to the hospital from the office to have some tests done. In 48 hours, a surgeon had been called in; cancer was a definite, and the protrusion suddenly grew from the size of a baseball to the size of a grapefruit — just in those couple of days.

They removed MOST of the tumor. They said 95%, but because it was attached to the spine between the second and third vertebrae, they could not remove it all. He started radiation the following month. I can’t remember how many treatments. That was followed by 12 months of chemo. I was in a state of panic for quite a long time.

At the beginning of the chemo treatments, the doctor told us there was about an 8% chance he would survive this. He actually told my husband, “If there is anything you have ever really wanted to do or see, I suggest you do it now.” He stayed home for 3 years total. He went to college and finished his bachelor’s degree and started his masters.

Well, tomorrow we celebrate 22 years of marriage. Miraculous, to say the least. He was tested about a year ago, and no signs of cancer to date. That is also miraculous since the odds are against that, particularly with melanoma. I can’t say that I don’t worry about it any more, because I do. But, I am so grateful to have had all these years. I certainly did not expect to.

I will add that even though he remains cancer free, he is not without some side effects of the treatments. He lost a kidney to the radiation. He lost a lot of muscle tissue in his back due to the surgery. He now has radiation-induced exodal neuropathy. He walks with a cane, and it becomes more and more difficult every day. But he keeps going forward. He cares for our horses, gives riding lessons, and started his own therapeutic riding group. When he has time, he still rides himself. He takes his students to horse shows spring through fall. He says he will do it until he just can’t anymore – even if he has to instruct from a wheelchair. We’ll see. I hope he manages for a long time.

Vickie Scraper

Tina’s Story

Russ Tyndall — Wed, 08 May 2013 15:30:45 +0000

In Memory of my daughter Tina Sullivan, also known for her blog http://www.paleskinisin.com

She grew up in MI moved to AZ one year after college where she met her husband and gave birth to her daughter.
Her daughter was born Aug of 2005. Then the monster (as she called it) found its way into her life April of 2006. Her daughter never got to have a healthy mom. But to look at Tina no one could ever see her illness. She was strong and hide it well. Worked daily as a preschool teacher and loved being with the kids.

Tina’s husband notice an ugly mole on Tina’s back and told her to get it checked. Then within 2 months of being diagnosed with Melanoma she had 2 surgeries and found that the cancer had spread to the lymph nodes under both of her arms. At that point she was Stage 3.

She wrote on her blog: “I created Pale Skin Is In as a journal of my thoughts & experiences and most importantly spread awareness of Melanoma.” She spoke about healthy eating and eliminating sugar from your diet as sugar feeds cancer cells. Even though she didn’t like green juice or green smoothies at first she said, they where good for her body and started drinking them daily. She didn’t just want to count on modern medicine to heal her body. Tina wrote: “Doctors don’t regularly screen for melanoma and patients often find their own so be sure to watch your skin.” 2009 she was clean and clear so we thought…She became stage 4 when it moved into her lung then she lost a kidney in 2010 with melanoma.

Here is how strong she was…her final post for 2010 while in a trial for melanoma and stage 4 having lost her kidney that year:
“I can’t say the year was bad when I felt so much love throughout the year. So as I say good-bye to 2010, it is with a smile and warm heart. Not, thank goodness it is over. I look forward to all the joy and blessings that 2011 will bring into my life. I hope the same for you.”

Tina was a hard working young lady with big dreams like everyone else. She really came into her own when the monster, as she called it, halted her dreams. She became a great advocate for Melanoma. She stood strong and tried to encourage as many people who asked her for advice. She shared the heart aches with the good news.Her dream was to help educate the world about Melanoma. Which she did wonderfully.

Tina went through varies treatments, trials and doctors. She knew there was no known cure for Melanoma but prayed one would arrive in time to save her. God thought otherwise and took her in July 2011. Tina remained strong and posted her last post on May 24, 2011 on her blog. As a family we worked together to bring Tina back to MI in early July by RV with her husband, daughter, dad and myself. She loved the drive and getting out of the house, the move was wonderful for her. Once arriving in MI she loved her daily view of the lake and her little one playing in the water. She spent every minute she could in the shade on the deck. She said, “Mom everyone should have this view once in their lives”.

Tina loved this saying: Take care of your body. It’s the only place you have to live. — Jim Rohn

In memory of our daughter, Tina’s Place was founded, to open May 2013, Melanoma awareness month. To allow others to enjoy Tina’s View, as she requested. Tina’s Place is called to be a Lighthouse, guiding individuals to a lakeside cabin into a not-for-profit free get-away for Melanoma stage 3 and 4 survivors and families to reconnect with nature and family in a peaceful lakefront setting. To promote Melanoma stage 3 & 4 recovery by offering opportunities for survivors to reconnect with nature and family. Giving families precious time away from their everyday lives whom are in the midst of this disease. Tina’s Place vows to keep Tina’s awareness and prevention efforts alive.

visit us at www.facebook.com/tinasplacemi and to apply.

Mary’s Story

Russ Tyndall — Tue, 07 May 2013 15:21:06 +0000

Story submitted by guest blogger: Mary Benesh-Zoeller

I [purposely] included a pic of me sunning on the beach all happy-look where it got me: 4 surgeries, 7 incisions, and 3 failed treatments.

My story began in February 2009 (well, thinking about it, it really began back in my childhood with all the sunburns I acquired as well as the tanning I became addicted to as a teenager, and then the tanning bed overuse that occurred from the age of 28-38). I grew up with two older sisters (10 and 11 years older than myself) who often “laid out” on the roof of our garage with those lovely foil blankets and baby oil. Because I idolized them so much I figured what they were doing would be worth my time because boy did they get a lot of attention from boys! So my addiction/fascination with being tan started at a very early age. We didn’t have sunscreen but we had coconut tanning lotion SPF 4! Every summer I got my base “burn” and remained tan the rest of the summer. Becoming a teacher didn’t help either, because I have my summers off so my tanning fetish continued after college. I was then introduced to tanning beds from a friend when I was 28. She was tan all year round (I live in Wisconsin, not naturally possible) so I inquired about how she kept her golden glow all year round. Needless to say I became a fan of the “fake” tan and continued that bad habit from 28-38 during the winter months! OMG can you say way overexposed?” Ultimately in November of 2008 I had this funny looking “growth” on my shin where I thought a very small mole once inhabited. Of course I ignored it until my sister (a nurse) asked how I got the “blister” on my shin. Fast forward to January 2009 and my sister wondered if the “blister” had healed yet. I said no and it looks bigger and has even bled. Warning signs everywhere but I ignored because I really never thought melanoma or skin cancer were a possibility. So I managed to get into my family doctor early February and she removed it without any concern. She even said, “ Doesn’t look like skin cancer.” So I proceeded with living until a week later I was called by my doctor’s nurse who asked if I could come in to speak with the doctor. “Well, that can’t be a good sign,” I said.

“It’s best if the doctor spoke to you personally.” Gulp.

Longest day of my life waiting to see her. I received the news On February 11, 2009. Stage 2B ulcerated… lots of technical jargon I didn’t understand. I had the WLE, 6 lymph nodes in right groin removed and 4 weeks of high dose interferon. I tried the low dose but due to my history of depression I became suicidal and had to stop after just 3 weeks. Then June of 2009 (about 3 weeks after I stopped the injections) another spot near my original melanoma appeared. More melanoma- so I needed another surgery with a skin graft from my stomach to cover the gaping hole left behind on my shin. My original oncologist was not a melanoma specialist (big mistake). When I asked him what my next step was he said, “Nothing, just watch and wait.” I did not like that answer so I am now in the hands of a melanoma specialist. He suggested I try Leukine for a year. So for 14 days each month from Dec 2009-Dec 2010 I injected myself wherever on my body I could find fat and not a bruise from a prior injection. It was very doable compared to the interferon. I have had many “spots” removed from both legs and my head since then but all have been either basal or precancerous. Because I had a recurrence so quickly after my initial diagnosis, my doctor feels a PET scan twice a year is necessary. I had a PET-April 20, 2012. Not good news. Two spots now internally in lower right leg. Doc was pretty sure the 7mm tumor is melanoma but was baffled by the 4mm spot near my ankle. Surgery scheduled for May 17th. The waiting is like torture. Both “nodules” (come on docs you can say tumor) were melanoma so I enrolled in a clinical trial for 3 months. It was rough but nothing compared to the whole month of interferon. Next PET scan was October 12, 2012. I hoped and prayed there is No Evidence of Disease (NED). NED was not to be as small spot near ankle but too small to surgically remove so wait until January 18, 2013 for another PET (lots of PET scans and very fearful of a secondary cancer surfacing!). This one also showed second spot near knee. I was then referred to surgeon at Northwestern in Chicago for Isolated Limb Infusion. Not a candidate at this time since my tumor burden is low (glad to be a low achiever in this area!). Really, we came all this way and you couldn’t tell that from all my PET scans? So I had surgery February 20, 2013 to remove 2 melanomas as well as a lymph node behind my knee. Lymph node was thankfully negative but at the 2 week mark infection set in so now exactly one month after surgery I am still dealing with open wound care and lots of edema and pain. NO TAN WAS EVER WORTH THIS! Your husband should not be forced to remove and replace gauze packed into a gaping wound because the wound care paper work wasn’t processed correctly and while removing the mess I cry out so he begins crying because, “No one should have to do this to their loved one.” I am disgusted when I see sunburned and tanned skin especially against the white of our WI winters.

There has not been a day that goes by that I don’t think of this beast. I used to cry at least once every day when I’d think about how I was going to die such a terrible death. I don’t cry every day anymore (but on occasion I do!). However, I go to sleep at night with it on my mind and I awake with it on my mind. I feel as if I am walking around with a ticking time bomb waiting for it to go off-and it recently did-for the fourth time. Thank God I still feel healthy enough to teach because that is when I get the most peace. I don’t think about every ache and pain (there are a lot of them, especially the swelling in my leg due to lymphedema-which I was never warned about). I have suffered emotionally, physically, and financially due do this insidious disease. My son, who was 16 at the time of my diagnosis, had one request of me when I was going through treatment, “Keep fighting.” That still resonates inside me as I read about the journeys of so many other melanoma warriors who are not in a good place right now. I don’t know what my future holds but I know who holds my future, and I will keep fighting.

The last 4 years I have had my students participate in the SunWise and Shade Foundations Sun Safety poster contest and so far we have had winners each year. I’d like to believe my story has impacted all the kids but I still see red faces greeting me at my door and I give a friendly reminder about Slip! Slap! Slop! and Wrap! I proudly wear capri pants and show off my lovely skin grafted scar and now four more incisions hoping that reminds them as well. Recently I even got a small tattoo on my forearm in support of melanoma awareness.

I have grown in my faith as well. I know God did not give me cancer. I know He does not want to see His children sick. I know He wants to see us live life abundantly. I have learned to “praise him in the storm”. I have taken on an attitude of gratitude even though my mind takes some convincing on tough days but my heart is in the right place. I love my local Christian radio station even though my son ridicules me and turns the station in the car. I find it uplifting. I have supported the MRF and American Cancer Society the past 4 years and will again this year.

I thank God for the support I have found in an AMAZING online community as well as for the love and support of my family and friends. No one can beat the beast alone.

I met a wonderful older lady at a recent appointment who is very scared about the beast yet she has emailed me since we met and had her church ladies create a prayer shawl for me. So although I wish melanoma had never entered my life I am amazed at the kindness of strangers through all of this.

Mary Benesh-Zoeller

4 time melanoma warrior stage 3????