In December of 2006 Austin had a mole removed that was Melanoma. It was successfully removed with clear borders. To be sure the Melanoma has not spread Mayo Clinic suggested a sentinel lymph node removal. He had lymph nodes removed from 5 areas and all were clear.
He continued to get skin checks every 6 months and never had another mole removed. At first sign of a cough or headache we had things checked out. With each passing year we felt certain that it did not spread.
Until July 2016, Austin had an enlarged lymph node on the same side the malignant mole was removed from. After an MRI and biopsy he was diagnosed with Metastatic Melanoma (stage lll cancer), the cancer had spread 10 years ago and it began to grow and spread.
On September 2, 2016 He had a right axillary lymph node dissection(all the lymph nodes under his right arm removed). He came home with multiple layers stitches and a drain. Pathology showed at least 3 lymph nodes were positive for melanoma.
At a follow up appointment October 4, 2016 the surgeon discovered a melanoma cell attached to the incision site while the surgeon was removing his lymph nodes/ melanoma. He then had another surgery to remove the incision and the new melanoma spot. After the surgery October 27, 2016 he had a clear PET scan, and the scan showed he was “cancer free” or NED no evidence detected.
Because the melanoma spread from the lymph node to his skin his team of doctors from Mayo decided to have Austin followup with radiation and 1 year of immunotherapy. After 4 weeks of radiation, Austin rang the bell 3 times in celebration. Radiation was hard and very painful he endured horrible burns and had extreme brain fog, occasionally forgetting his way home while driving.
February 2,2017 he had his first dose of immunotherapy Yervoy. He would be getting this treatment once a month. February 24, 2017 Austin had a cough for a weeks and had been battling a low grade fever along with night sweats, he thought it was a cold. While sitting next to him at church and he was coughing.. I remembered what an oncologist told us 10 years ago. If it had spread he would get a cough, my moms heart immediately knew he needs a lung scan. The scan showed the Melanoma had spread to his lungs he had over 150 Mets (tumors) he also showed spots on his liver (stage llll Metastatic Cancer). Because Austin’s cancer had spread so quickly he stopped Immunotherapy and started a targeted B-RAF inhibitor therapy, a combo daily oral medication (Zelboraf and Cotellic). This helped shrink tumors and stop the cancer growth in days.
Throughout this therapy Austin would have blood work, a PET scan or CAT scan, and an oncologist visit every 3 months. For almost 2 years this targeted therapy kept his Metastatic Melanoma shrunk and under control.
November 27, 2018 scans showed that the cancer was growing and new lymph nodes were affected. His cancer mutated and the targeted therapy was no longer working, his oncology team suggested we try a new Immunotherapy that had showed great improvement and had allowed some melanoma patients go into remission.
The immunotherapy used was a combination of two medications (Yervoy/ipilimumab and Opdivo/nivolumab), every 3 weeks for 4 treatments and every 4 weeks for 1 year of one medication.
Things seemed to be going well until March 8, 2019. He had a total of 4 immunotherapy treatments, and the cancer was growing and spreading. His oncology team started to look for trials that would be a good fit for him. He was out of approved medications that would work.
Up until March 15, 2019 Austin has worked a full-time job, missing very few days. As a family along with his doctors recommendation, we decided it was time for him to focus on his health and apply for disability. I was amazed everyday as he got up with drug side effects, exhaustion, and pain but worked long days helping kids with autism and showed all of us what strength and courage looked like! He will always be my HERO!
While looking for trials Austin’s cough continued to get worse, night sweats were increasing to all day and breathing was becoming more difficult. His team decided to start up a new generation of B-RAF inhibitors and after a few days all symptoms seemed to go away.
While on a family vacation in July Austin began having some pain in his lung. When we returned he had a scan that showed 2 tumors had began to grow. His team believed the B-RAF inhibitors were still working but that these tumors were growing. We meet with radiation oncology and decided to treat the largest tumor with 5 days of radiation, beginning on July 22.
While undergoing lung radiation Austin had complained of having a headache for a few days that pain meds did not relieve. Austin’s oncologist quickly ordered a brain MRI. When this headache began I again remembered what that oncologist 13 years ago told us that he would get a headache. My moms heart knew the cancer had spread to his brain. On Thursday, July 25th we found out his Melanoma had indeed spread to his brain, they could see 40 tumors. The doctors recommend 15 days of full brain radiation starting July 29th. After 6 treatments Austin’s headaches continued to get worse. On Aug. 6th Austin’s pain began to be unbearable and his radiation oncology team suggested taking him to the ED to help control the pain and vomiting. The ED was able to give him some pain medications to help and let him go home the same day. At 3am on Aug. 7th he woke up again in extreme pain with vomiting, his team referred him back to the ED. This time they admitted him to run further tests to get a better understanding of what is causing the pain. The MRI showed the tumors doubled in size and in numbers now showing more than 80 tumors, a small brain bleed, and swelling around the brain. The pain could be a cause of radiation or the aggressiveness of his Melanoma tumors growing. His team decided to get more aggressive and administer 3 days of intensive radiation. Hoping to shrink and ultimately kill the melanoma lesions and help with the inflammation. This caused Austin to lose his hair and have extreme fatigue. After staying in the hospital for 4 days he was released to go home on pain meds, anti-nausea meds, and high doses of steroids to control the swelling and pain. While home the pain continued to get worse he was re-admitted for pain management on Tuesday Aug. 13th, we are all hoping for his swelling to resolve and the he would be able to start his next regiment to control his cancer.
He had a huge team of doctors trying to come up with a plan for his next cancer treatment (chemo or a new trial), but their focus switched to the critical need of decreasing the inflammation in his brain while managing the pain and vomiting.
While trying to manage the pain and nausea the swelling continued to increase.. After an extremely hard day, doctors decided another MRI was needed. Austin was so agitated they were not able to get the MRI and he was brought back to the room. His nurse fought and got him extra sedation to have the scan done. This scan was very important to help the doctors and our family make decisions next steps to best care for him.
When we returned to his room Austin’s breathing became very labored and the team of nurses called a code blue. The emergency team worked to get him stable and he was then transported to the ICU.
The ICU team decided it was best to keep him intubated and sedated. Having him sedated allowed the ICU team to administer medications to try and reduce the inflammation and fluid from his brain. While waiting for the MRI and talking through what options we had to help Austin. The scan showed his brain was continuing to swell and now had begun to push down into his spinal cord, it also showed more tumors so may they could no longer count them. Neurosurgeons and neuro-oncologist explained that at this point surgery was needed to relieve the swelling. We believed to make the best possible decisions on what we could do FOR Austin not just DO to him, we needed to consult his oncologist. Although we wanted more time with Austin. His team of doctors (3 oncologist, many neurologists, 2 neuro-oncologist, 2 neurosurgeons, 3 ICU doctors, 3 ED doctors, 2 radiation oncologist, and an oncology surgeon) all believed the tumors were radiation resistant and that the swelling was most likely the tumors continuing to increase in size and numbers. We as a family with the support of doctors decided brain surgery would not help with Austin’s main issue, extremely aggressive cancer- Melanoma rapidly growing in his brain. After getting him comfortable we removed the oxygen and tubes and used medication to fully control his pain.
We had a few sweet words from Austin “Hi Ethan” and “I love you”. After his extremely rough day and being intubated he was aware that he couldn’t feel the right side of his body. He asked “did I have a stroke”, we told him he didn’t and that he was ok.
I will never know if this decision was best, but we (Austin and I)never talked about these difficult decisions. We never talked about it, we only hoped for the best. We didn’t spend time planning for death we spent time living with hope.
Austin and I had spent 3 years deciding what we would tell people and most of the time we would down play how sick he truly was. He never let anyone but me come to his doctor visits(until he meet Haley-his girlfriend, she came to most appointments the last 5 months) I knew it’s because he didn’t want people to know what the doctors said. He didn’t want people to pity or limit him. I know he trusted in God’s plan for his life, and made the most of each day and every interaction with each person he meet.
When the cancer became worse, I didn’t seem to have the strength to tell him how bad it was...
I was still hoping for a miracle. I couldn’t bring myself to belief or for that matter tell Austin the cancer had won.
When friends and family came to visit he would tell them once he got his meds “dialed in” he was coming home. He sent some of us funny inappropriate picture of him getting a suppository. We had Thai food, hand massages, smoothies, açaí bowls, turkey subs, watched movies, hung out with friends, he had a hair cut, at times he asked to hold hands, he wanted Haley or I to sit on the bed with him... but we never said this is potentially terminal or you might not make it. We simply spent time together and had fun.
He was concerned for us and would try to make us go home to rest telling us he would be fine. Ensuring us the nurses would take care of him, and they did... but one of us always stayed with him. Advocating for him and helping him control the pain. I can’t even begin to imagine the pain he must have been in, knowing he NEVER complained. Through all the surgeries and pain he endured he never even used pain killers other than ibuprofen. He was a warrior!
From Aug. 6th - Aug. 16th most of that time in the hospital Austin was making plans to go out to eat and to the movies (he really wanted to see Peanut Butter Falcon, please see this and think of him)with so many of us. On Aug. 16th, Haley walked me out and told me that her and Austin were expecting a baby, she was about 8 weeks pregnant. They wanted to wait and tell me after the first appointment to ensure the baby’s was healthy. Looking back at all of the treatments, getting pregnant was a miserable. The medications Austin took were trail medications and we weren’t sure if they were safe. (I never had the opportunity to talk to Austin about the baby)
From Aug 17th-20th Austin was in the ICU for the most part unconscious but comfortable. His cancer was very aggressive; although Austin fought extremely hard, we feel he had the BEST team of doctors caring for him at Mayo, his battle against melanoma ended August 20th, 2019.
Austin we will love you forever!
Fighting melanoma was a daily challenge for Austin. He had over 300 doctor appointments, 45+PET/CAT/MRI scans, 18 biopsies, 4 surgeries, spent 2 weeks in the hospital,100’s of labs drawn, 20 rounds of radiation, extreme burns, brain swelling, had lymphedema, needed drains after surgery, needed wounds packed, lost his hair and eyebrows, had hives, extreme joint pain, feet swelling, sunburns, vomiting, excessive coughing, had fevers, night sweats, and felt like he had the flu daily. He rarely complained and continued to make a difference in lives of kids diagnosed with Autism. He loved, encouraged, and support his friends. Was a vocalist in his band Divine Hammer. Worked at an eye glass store, sold vintage clothing. He has shown love, supported, and impacted so many with his positive attitude and unending humor.
Austin you were true warrior and our HERO!
On Austin’s first heavenly birthday his perfect and beautiful baby girl Sunday was born. Austin never got to see or hold his sweet baby but they will forever share a birthday.
Hello, this is the first part of my story. Since this video it spread to my brain & lining of my brain. I ran out of options in Ca & moved to TX for a clinical trial. Intrathecal Nivolumab directly to my brain through an Ommaya reservoir then iv into my arm. I've had gamma, wbr & brain surgery to place the Ommaya. Recently 4 brain mets had progression. I should know this wk of I'm in for more gamma or wbr. wanted to share with you since we need to save the world from this monster. I have a fb pg & youtube channel called Warrior Beauty.
My daughter Shayna was a healthy young mother. But at 21 she was diagnosed with cervical melanoma. Her whole world changed with those words. Shayna had treatment at some of the biggest melanoma centers throughout the United States, but even that never stopped her cancer after each surgery it didn’t take long to hear it was back again. So after fighting and induring the horror of chemo therapy and everything else, the cancer won. Shayna died at home at the age of 24. Since this was twenty years ago there is more treatments and more support on line. We didn’t even have a computer when she was sick.
Both my sons have melanoma. My 31 yr old is now 2 years NED after a stage 3 diagnosis/surgery 3 lymph nodes removed all clear. My 23 yr old was just diagnosed and had removal 3 weeks ago stage 0. A world I never wanted to be part of. I’m a very scared mom!!!
I grew up on the beaches of SoCal. I spent LOTS of time laying out and burning through my childhood, teens, and twenties. That is a lot of sun damage to my skin. When I turned 30 I was diagnosed with stage 1 melanoma. I had a lymph node biopsy and basically went on my way with annual x-rays and blood work. 10 years later the melanoma returned as stage 4. I began 2011 with a 16 cm tumor in my left armpit and mets in my lungs and bones. I was dying. Thanks for Dr. Hamid at the Angeles Clinic and Dr. Morton at the John Wayne Cancer Center, I was saved by 5 rounds of biochemotherapy. This brutal treatment combines 5 drugs at the same time, 3 chemo drugs and 2 immunotherapy drugs. I received 2 years of treatments in 5 months and by May of 2011 I was declared NED. I am currently 7 years NED. Life has blessed me and one of my passions is to spread a message of HOPE to others.
I was 27yo in 2007. I was laid off and had no insurance. I went to the doctor to have a weird looking mole looked at. After a biopsy, I quickly learned I had stage 2 melanoma. It was excised and I had a sentinel node biopsy which came back clear. I then had many appointments with an oncologist for blood work and to determine my plan for treatment. By this time I was broke and ended up having to file bankruptcy. I couldn’t get assistance and couldn’t afford care so I stopped getting care. In 2011, still w/o insurance but financially getting back on my feet, I went back to the oncologist for a check-up. He pointed out some suspicious moles and sent me back to my dermatologist. I had some biopsies done and one came back as stage 1 melanoma. My dermatologist said I only needed to have it excised and I should be fine. So that’s what we did. I followed up for a couple years, getting biopsy after biopsy and several excisions on abnormal spots. Then money got tight again and I stopped getting check-ups. Now this year, while visiting a friend in another state, I found a great dermatologist at a good price. I went in and had some biopsies done. One was stage 1b melanoma. I couldn’t afford another node biopsy so decided to just have it excised. Since then I’ve made several trips there and have had enough biopsies and excisions that I don’t even try to count them anymore. I’m now trying to figure out how I’m going to move and find a better job with benefits simply so I can keep fighting.
I was first diagnosed with melanoma in 2004 at the age of 17. I had a mole that was changing color and got the whole thing, with margins, removed. I’ve been hyper vigilant about sunscreen ever since. Fast forward to February 2019. I had a small growth on my back (underneath my skin) that my doctor was not really concerned about. “Probably a lipoma,” she said. All my skin checks were good. When it started to change, I went back to the doctor, and we decided to biopsy it, just to check it out. Still no concerns. February 18, 2019 I got the call from my doctor that the biopsy showed that it was melanoma, and they needed to see me right away. Little did anyone know that just two hours earlier, I got a long awaited for positive pregnancy test. We immediately started working with teams of doctors to come up with a treatment plan that would be safest for baby and me for stage 4 melanoma. I had two surgeries in my first trimester to get better margins, and everything seemed to be looking good. After the surgeries, everything got put on hold while I safely carried our baby for the next nine months. We were told that melanoma could pass through the placenta to baby, but the placenta was clear after birth, and baby is perfectly healthy! I had scans after baby arrived, which surprisingly showed metastasis to my liver. I say surprisingly because the surgeries seemed to be so successful. Anyway, It showed about 10 tumors that had developed during my pregnancy. The best treatment route for me was to take part in a clinical trial up in LA (we’re in the San Diego area) which is where I write this from. I’m 7 months into what will likely be two years of immunotherapy (two full cycles of the trial). After just a few infusions, my scans started to show that some of the tumors were no longer active, and my largest tumor had decreased in size by 26%. I head up to LA once every 3 weeks for my infusions, CT’s, and MRI’s. The treatment is working better than what we were prepared for, and I’m able to live a fairly normal life while undergoing treatment. Baby is now almost 10 months old, and I’m so grateful that he escaped the cancer and that I’m still here fighting.
This is my wife’s story (Staci Hotujec) - My journey started back in August 2018 when I had a large mole on my leg removed and it came back positive for Melanoma. In September we learned that I have a particularly aggressive type of Melanoma and my diagnosis was Stage 2C. I had surgery to remove the tissue around where my mole had been removed, which left me with a hole in my leg about the size of a hockey puck, the surgeon also removed a lymph node in my groin to see if the cancer had spread. The lymph node came back positive for Melanoma, which means the cancer had spread up to the lymph nodes in my groin. This now put my diagnosis at Stage 3C. In October I had another surgery to remove the rest of the lymph nodes in my groin, those were all tested and the cancer spread to three out of nine lymph nodes. At this point I was 20 weeks pregnant with Boone, we were presented with three different options to treat the cancer moving forward; terminate the pregnancy and begin treatment immediately, wait to start any treatment until after I have the baby between 32-34 weeks, or start a form of treatment that has been used for decades and is mostly safe with pregnancy but will make me feel really crummy and it isn’t very effective. With these options my Oncologist recommended we get a second opinion from a doctor/professor at Northwestern Memorial Hospital in Chicago who specializes in Melanoma. So we made the trip to Chicago and talked with him, we decided to wait on any treatment and have the baby early. After this I had one more surgery to have a skin graft over the area the mole and tissue was removed on my leg. After healing from the last surgery it was almost like life was getting back to normal. I was able to go back to work and even start driving after not being able to for over three months. My belly was growing and the baby was healthy after all of that. There still was a chance that the Melanoma could spread to the baby through my placenta, so we had to make sure to get that tested after I gave birth. Fast forward to this year, I was induced on January 30 and gave birth to a perfectly healthy baby Boone on February 1st! He was in the NICU for two weeks until he figured out how to take all of his bottles, my placenta came back negative for Melanoma so it did not spread to Boone (which was a huge relief). On February 5th, I had another PET/CT Scan to get a baseline of the cancer in my body. The next day we learned the worst news, in the last few months the cancer spread into the bones in my back, lungs, liver, and spleen. This brought my diagnosis to Stage 4, which means the cancer in my body is no longer curable, it will always be with me. The last few weeks have really taken a toll on me emotionally and physically. My entire abdominal area is swollen and very painful, it’s hard to eat because of my enlarged organs pushing on my stomach, I’m weak and get short of breath when walking small distances, and my back is starting to hurt. I have been accepted into a clinical trial and I started an immunotherapy treatment on Thursday this past week. I will continue to go in every three weeks for about three to four hours until the medicine is no longer working, then I will switch to a different type of treatment. My hope is that the medicine starts working quickly and shrinks the cancer spots so I can start feeling more like myself. The support of my family, friends, and coworkers has been absolutely incredible; you all mean so much to me! Dustin has been a rock throughout this whole journey and has stepped up to do everything around the house that I’m not able to, especially now that Boone is home. He’s such a great dad to our precious little boy! I want to get better and live a long life for them. I’m finally telling my story because this is a part of my life and will always be. There will be good days and there will be bad days, but I’m doing my best to stay positive and get well. If you have any positive thoughts or well wishes that you’d like to send my way, either now or in the future, I’m always accepting them. They mean more to me than you might realize. Also, PSA, please remember to wear sunscreen and get any suspicious moles or marks on your body checked as soon as you notice them, don’t wait .
A week shy of her 30th birthday, Staci’s valiant and courageous battle with Stage 4 Melanoma came to an end. Staci was surrounded by her family and an incredible amount of love. We were blessed with the opportunity to say goodbye to this wonderful wife, mother, daughter, granddaughter who meant so much to so many. Accepting this tremendous loss is certainly a difficult endeavor. Staci’s family and friends will continue to need prayers and support in the days to come as we process this immense loss. https://m.facebook.com/Stacis-Story-401342927314993/
I am a fighter, I am strong and I will never give up! Cancer can try but it will not win!!! I won't let it! Here's my story.....
I was always forced, as a kid, to wear a Tshirt over my swimsuit, wear tons of sunblock and find shade no matter what. I thought my parents were just overbearing when it came to the shirt over my swimsuit. So, of course I became a defiant teenager and soon as they were out of sight, the shirt would be too. I had several bad sunburns as a teen, and spent countless nights attempting to sleep in my bathtub full of cool water and oatmeal, for relief. I am allergic to aloe vera so I am also limited on what I can use for sunburns. .
I hid my white legs for a very long time, never wearing shorts in public even and as a young adult, I was embarrased of it. I was naive and let someone convince me that I could get a tan, all I had to do was be patient and go to the tanning salon daily! Haha yeah right! I am a blue eyed, redheaded woman with irish, english, italian and native American blood, but mostly Irish, like 90 %! I am pale, fair skinned as can be, even finding makeup that matches my skin tone is hard! But like I said, I was naive and after 6 months of going to tanning beds everyday for 5-15 min each time, I got a little tan! I was shocked and thrilled, but also in denial of what I was ultimately doing to my skin and body. I was blinded by finally experiencing how it felt ro have a tan! I went out and bought shorts and tank tops! And then stupid me, didn't put sunblock on still!!!
Adding onto the problem, when I was 19 I had worked 9 days straight and all double shifts, I was beyond exhausted. So my best friend and I decided to go relax for the day at her grandparents house. We laid out by the pool and unfortunately fell asleep! 3 1/2 hours sleeping in the sun and I woke up with sun poisoning!! A trip to the ER, massive blisters on my back, and 3rd degree burns over more than half of the backside of my body. I was sick as a dog, vomiting and dizzy with a massive migraine. I am pretty sure that had atleast a little to do with my recent diagnosis of melanoma skin cancer, as the mole that started the process was normal until that day. Shortly after, the mole began to get a little pimple on it, but it would go away and then come back after a few months, and continued like that for 15 years. I ignored it, honestly just assumed it was a form of acne. I finally had it looked at a few weeks ago wjen the pimple wouldn't go away and was bleeding consistently, sadly Iwas diagnosed with melanoma. I had surgery just last Monday, August 24th and will now have 2 ugly scars on my arm and in my armpit. This is the 2nd type of cancer and the 3rd surgery I've had in just 1 year's time. But thankfully, there was no cancer in my sentinel lymph node biopsy results and they got all of the melanoma tumor. The Drs also removed my entire thyroid in February of this year, because of malignant papillary thyroid cancer. But they got it all then as well, so I am safe for now. I garuntee I will never be the same though! I have ordered spf clothing and some extra shade hats as well as a few extra umbrellas.
I am a fitness instructor and life, no matter how hard, cannot and will not keep me down! The 3rd surgery I mentioned before was a discectomy and spinal fusion in my neck, I fought through that one and went back to work after only a month of recovery. I am now redting and recovering from the melanoma surgery and refuse to be kept down any longer than I absolutely have to. I need to get back on my spin bike and kick some more booty!!! It is what I do, and nothing is gonna stop me, NOT EVEN CANCER! I am a survivor and a warrior!!