Melanoma Warrior Alicia Caraway

If you know Alicia, then you know she is an absolute warrior. She has been battling melanoma for well over a decade, with multiple lifelong lasting impacts. This year, in 2023, she discovered there was a new concerning spot & immediately began treatments which, yet again, resulted in irreversible side effects except it did not reduce the concerning spot. At this point in time, Alicia is wrestling with which direction she should go in regards to a treatment plan. She is taking a trip to Tampa, Florida for a second opinion. All of this includes multiple & significant unexpected financial implications her & Tom (her husband) were not prepared for.

Even amidst such challenging times, Alicia has always kept her positivity about her, been there for her friends & family, and given back to those in need whenever she can. For a long time now, she has been a part of the “Lasagna Love” movement, making Lasagnas for family’s in need of a meal.

This fundraiser is to help Alicia get the medical treatment she needs while providing some financial relief for her and Tom as they navigate this next chapter in their lives.

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below are a couple of status updates from Alicia’s Facebook page…

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The first is from Halloween 2023 where Alicia speaks about Melanoma.

Do you know what’s really spooky??

How deadly melanoma is and how fast it spreads! I have heard the term “but it’s just skin cancer” so many times. That is an unfortunate misconception, YES Melanoma can be prevented (hello SPF!) but it can also be caught EARLY. The key is to catch it early, because once those cancer cells enter into your lymph nodes and go inside the body, it can spread anywhere. Melanoma is such an aggressive cancer that it can even enter the placenta and spread to unborn fetuses. It’s sneaky, it hides, it can spread anywhere, and it’s insanely difficult to treat once inside the body. Just from one mole on my right knee, I’ve been through countless surgeries, treatments that left me with life long side effects, I’ve had a cage screwed into my skull for radiation for a brain met, and I have so many scars and a bum knee/leg. Yes I have suffered, but 13 years later I am still here to tell my story after all that hell. I am still currently battling a positive lymph node behind my original bad knee. It sucks! It has been a very hard year both physically & mentally, but I’m still here fighting and sharing my story. Aside from SPF (especially daily for your face) and avoiding tanning beds at all cost!!!!! ☠️ Skin checks are the best way to keep track of changing moles and detect cancer and precancerous moles early. If you haven’t had yours yet, please reach out to your dermatologist and get yourself on the schedule! If I didn’t advocate for myself at 20 and push for the biopsy, who knows if I would be here today!

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this next post was from June of 2023. There is a lot that has happened since then but this is to give a background of her experiences in her words:

Long overdue health update:

I’m alive!

I have now completed 2 out of 4 immunotherapy treatments at Roswell. After a roller coaster of side effects and issues, we have decided to stop treatment and take a break so my body can catch up. The doctors have no doubt that I am having a response to the first 2 immunotherapy treatments due to my extreme side effects. Within 1.5 weeks of my first treatment, I became so so sick. I had constant fever & chills, fatigue & exhaustion to the point of not being able to get out of bed, mood swings, no appetite, nausea, the worst migraines, insomnia, restlessness, racing thoughts, constant hot or cold temperature and sweating all the time I did not know how I was going to push forward and get through this as “normal” as possible. Thankfully, my next trip to Roswell for my second treatment gave me some more answers to all my ongoing issues. Half of what I was experiencing were the side effects from the treatment, the other half were caused by hyperthyroidism. One scary side effect of immunotherapy is that your immune system can attack your healthy organs. In my case, it took my thyroid out almost immediately. After a full work up and making sure everything else looked good (MRI of the brain included), we concluded the horrible migraines, weigh loss, hair loss, irregular temperatures, fatigue, and low appetite were all from my thyroid. We decided to continue the second treatment and monitor my labs closely to know when the thyroid goes into hypothyroidism, basically a waiting game. I still experienced some severe fatigue, fever, chills, and irregular temperatures, but the horrible head aches and nausea seemed to subside thankfully. I had my third treatment scheduled for May 31st and I was feeling ready to get it over with. I arrived and got settled in my infusion chair, all cozy and ready to go. After fighting to get a working IV for 20 minutes to start fluids, it was announced I was no longer receiving treatment and I had to go meet my PA instead. My labs had come back with very elevated liver enzymes. They had been rising with each treatment, and doing a third would have put me at really dangerous levels and risked permanent damage. We decided to give my body the break it’s been asking for and I have been put on steroids to help lower the levels. This was another sign that my body is having a reaction to the treatment. I think it remembers what to do from 8 years ago, because everything seemed to come so fast. The labs also discovered that my thyroid was now in hypothyroidism, meaning I can take levothyroxine daily to regulate my hormone levels. I want to be very honest, I did not take the news of my thyroid well at all. The last thing I wanted with this whole mess was a lifetime side effect and needing a pill every single day to function normally. After some processing and discovering how normal this condition is for many, I am doing much better with it now. I am finally balancing out and feeling human again after the intense back and forth hormone switches with the steroids added in the mix. I plan to fully enjoy this little stretch of summer I have and live my best life! ☀️

If you know me, you know I don’t do well when life doesn’t go as planned. If I have learned anything by now though, it’s that life doesn’t follow the plans. Im not sure if we will continue this treatment plan, skip the next two, or decide to just do maintenance treatment down the road, but I do know whatever comes next, I got this. All that is on the medical calendar for now is a scan on July 19th to see what the two treatments have done so far.

Thank you to every single person that showed up to support me and supplied me with endless amounts of love. I am forever grateful and it has really shown me true kindness and compassion. Thank you for every check in text, card, bouquet of flowers, meal made or sent, grocery store run, beautiful handmade gift, helping take the dogs out, helping mow the lawn, checking on Tom, a prayer or positive thought, and most importantly making me laugh or smile! I couldn’t have done this without my people

Some pictures to add to my update now that I can get back on to my next adventure.

I’m also getting back into and dropping off a few lasanga love deliveries this week! I feel the need to give back some meals after I received so many the past few weeks

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this next post was from May 2023 (black out melanoma month):

Today is the day, Black Out Melanoma Monday to kick off the first Monday of May- Melanoma Awareness Month. I ask that you wear black for not only myself, but for everyone battling this awful disease. I am going to share my very long story below. Take a picture of yourself wearing black, tag me and share my story or a Melanoma fact and tag #blackoutmelanoma

My Journey:

2010: At the ripe age of 20, I had a suspicious mole on my right knee. It was growing fast, raised, different colors, uneven boarder, and began to bleed. After a quick google search, I was convinced I had melanoma. Everyone thought I was insane, but I pushed for the biopsy and thank God I did. The first biopsy came back negative, but they sent it for a second opinion. That second opinion saved my life, it came back positive for melanoma. We immediately did a wide wedge resection and sentinel node biopsy. A large portion of the skin was removed and the boarder tested negative as well as the sentinel lymph node. I was stage A at this point and considered no evidence of melanoma. I was in the clear and told to do a skin check every 6 months to look out for any new or changing moles.

2013: I was 23, had just graduated college and was deciding what I wanted to do for the rest of my life. After some pain in the surgical area on my knee, a bump popped up outside the boarder. This bump was growing quick so off to the Dr I went and we got a rush biopsy. The biopsy came back quickly and it was the original melanoma. I was devastated and terrified. I was referred to Roswell Park Cancer Hospital in Buffalo. They had a melanoma clinic and specialized in treatment and surgery. I was immediately scheduled for an isolated limb perfusion surgery as well as a full groin lymph node dissection. This surgery was very complicated and ended up taking 13 hours. Immediately after waking up I realized I had a horrible pain in my leg. With my morphine pump I was still at a 10/10 pain level. It was discovered I had one of the worst possible complications, I had compartment syndrome. This happens when your muscles began to swell to the point that they will die off. To relieve the pressure, I needed another big surgery called a fasciotomy, this involves a deep incision deep into the muscles to relieve the pressure. We were left with a hard decision because I was already so weak after such a long an invasive surgery. I was finally put back under to have the double fasciotomy on my thigh. Two deep incisions were made on each side. I felt immediate relief, but it was only temporary. The next day, the horrible pain returned to my calf. I again needed to go back under and have another double fasciotomy to my calf. This was now adding up to three invasive surgeries in a short 5 days. I was barley hanging on and in the weakest state of my life. I had be on a wound vac and was completely bed ridden. I made it home after a week for a very short amount of time. I developed a fever and started feeling very sick. I ended up back at Roswell and stayed for 30 days. My body was fighting off all the toxins that were released from my muscles dying. This was the darkest times for me and I became very weak and wouldn’t get out of bed. I don’t have a lot of memories from this time. I do know that i stopped eating, I didn’t want to fight for myself. I don’t know what finally snapped me out of it but I did eventually work to get healthy enough to break free. Shortly after I got home, we did a 3 month post surgery scan and MRI. The scans were clear, but the MRI did show a small spot on my brain. This spot was too small to biopsy, but it was assumed to be melanoma. We did a gamma knife procedure which is direct radiation to the brain. This procedure was so thorough that they had to screw a cage to my head to ensure the accuracy of the radiation. During this time, I was so bed ridden and my lack of movement caused me to also develop drop foot. This meant my ankle was stuck in a crooked position and I couldn’t walk on it. I was unable to have surgery to correct my ankle because I was battling my non healing wounds and I couldn’t have a cast due to needing bandage changes. I was referred to a wound care clinic and I had to go twice a week to work on getting my fasciotomy wounds healed. My mom was the ultimate MVP during these times. She was my support, my chef, my chauffeur, my therapist, and the best nurse I could have asked for. I wouldn’t be here right now telling this story if it wasn’t for my Mom

I was on crutches for almost 3 years!

2014: After another follow up scan, it was discovered I had a new spot pop up in my muscle tissue behind my right shoulder. After a biopsy it was discovered it was metastasized melanoma yet again. I sat down with my oncologist and he told me how serious this has become. I remember looking at my parents crying saying “this shit really is going to kill me isn’t it?” I realized how scary and serious this situation had become. We needed to come up with a treatment plan and fast! My odds of survival were very low. At this time, Melanoma treatment was not where it is today. Chemo was not an option because melanoma is a tricky cancer, it eventually outsmarts chemo after a few months. My only option was immunotherapy and I had two to choose from. I decided to start with high dose IL2, this was an older immunotherapy and it involved a full week in the hospital with 3 doses a day. The side effects were extreme flu symptoms, it just about killed me. I had fever, shakes, chills, headache, nausea, and vomiting. The side effects were so intense that I didn’t receive my full dose most of the days. After completing two weeks of this, we did a scan before completing the other two weeks. It was discovered that I had a new growth pop up behind my kidney during these treatments. We decided the first immunotherapy wasn’t working and we needed to move on to option B, the Yervoy.

2015: I started the Yervoy immunotherapy treatment locally in Syracuse. This was a walk in the park compared to my first treatment. I received (4) 90 minute infusions through a port every 3 weeks. After my third dose I had some side effects so the Dr wanted a scan to make sure there was no internal inflammation. This scan showed that the spot behind my kidney had shrunken significantly. This was the last bit of hope I needed to push forward. I still had one more dose left and it was already working Every scan after this scan showed my spots getting smaller and smaller until they completely disappeared and I got the best title of NED, no evidence of disease. Melanoma is such a tricky disease, they don’t use the term remission. I was to continue to be scanned & monitored to make sure no new spots popped up. Melanoma is known to hide, which it did the 3 years after my first surgery. After this, I was married in May and after 2 years, my last bit of open wound finally healed enough to get my ankle fixed! I did a partial fusion to my ankle, this was not an easy surgery for me. The amount of pain I had from breaking the bone, shaping it back, and all the pins and screws was unbearable. I was casted, then had a boot, then a brace. I had to learn to walk all over again. I had gained a lot of weight from being on crutches for so long, so it was even harder for me to get active again.

2023: After the longest health journey, at 33 I am now light years from where I was in 2015 health wise. After my yearly scan, I have a new positive biopsied Melanoma lymph node behind the same knee of the last 2 reoccurrences. This is after an 8 year streak of clean scans. We are now starting treatment again, most of it being the immunotherapy that worked so well for me the first time. My dosage is 3 parts Yervoy with 1 part Opdivo. I am receiving (4) 90 minute infusions every 3 weeks. Once I complete this treatment, we will scan again and go from there. This treatment honestly is not so easy this time. I am having almost every side effect and I’m already so tired. This sucks but I am not giving up yet. The worst of the side effects showed up a week after, and I lost my entire weekend and was stuck in bed. I have severe dry lips and skin around my mouth, fever, chills, irregular temperatures, mouth is dry & sore, I can’t sleep well, fatigue, lack of appetite, and sore muscles and joint pain. My medical team is ensuring me this is a good sign, and my body is responding. I am praying for the best and praying for the strength to get through this again. I want to continue as much normalcy as I can through this. This has taken a huge tole on my mental health, but I am doing my best to stay strong and keep my positive mind set.

Wow that was A LOT! I intended to have this posted well before now, but the weekend did not turn out the way I planned. Feel free to share this post, share my story, and share about skin safety, If you made it this far, thank you for listening to what I had to say