5 Cancer Survivors Discuss Mouth Sores from Chemo and Other Treatment Side Effects

In honor of World Cancer Day, we caught up with 5 cancer warriors and survivors. They shared their story and the lessons they learned while fighting cancer and dealing with treatment side effects like mouth sores from chemo. They also shared tips, helpful information, and products that helped them get through cancer treatment and recovery.

Meghan Koziel | Breast Cancer Survivor

In 2015 I was a 26-year-old living in Pittsburgh, PA. I was living my best life, graduated from college, landed an awesome new job as an Occupational Therapist, was newly engaged, we just bought a house, and life was grand! I had leg reconstructive surgery that year, and around the same time was when I felt a lump on my right breast. I reached out to my doctor but given my age and the fact that I didn’t have a history of cancer in my family, I was told it was “normal” and most likely some inflammation along the milk duct. In my heart, I knew it wasn’t right, but I was just so relieved to hear from the doctor that I had nothing to worry about. 

Months went by and while I was healing from my leg surgery, I noticed the lump was getting bigger and more painful. I called my PCP who ultimately saved my life by ordering an ultrasound — the tech immediately talked to the doctor and on that same visit I was asked to do a mammogram and a biopsy. A few days later, on Monday, October 12, 2015, I was diagnosed with an aggressive form of breast cancer Er/Pr + Her2 – stage 2B; I was later identified with a PALB2 genetic mutation.

I was to undergo 16 rounds of chemotherapy (Adriamycin and Taxol) — I made it through 12 rounds prior to having severe allergic reactions, so I did NOT have a complete response to chemotherapy. I also had to do 33 rounds of radiation, and countless surgeries including a double mastectomy and multiple reconstructions.

Cancer takes so much away from a person, their family, and life's overall journey. Although deemed “no evidence of disease”, the constant fear of recurrence, post-treatment fatigue, and chemo brain still affect me daily. I am now 4 years CANCER-FREE, a mom of two beautiful miracle post-chemo baby girls, and I strive everyday to not let my fears hold me back from living my best life!

You can connect and learn more about Meghan through her blog or through Instagram

 

J.J.’s Story

In May of 2015, I started feeling pain and tenderness in my abdomen, but I ignored it until September 4th when my mother made me go to the doctor. I could hardly eat or drink. I was turning grey and I could see my stomach throbbing through my shirt.  

On September 4th of 2015, my doctor made me get a CT scan and told me that I most likely had colon cancer. I needed to get a colonoscopy to be sure, but at that point, I knew it in my heart it was cancer. I was quickly able to get the colonoscopy that confirmed my diagnosis. I was urged into surgery, as my colon was 90% blocked. I had 80% of my colon removed and 36 inches of my small intestine, along with many lymph nodes.

After my surgery I was referred to Duke University Health due to my condition; I was only 27 at the time of my diagnosis and tested positive for Lynch syndrome, a type of hereditary colorectal cancer. My oncologists at home and at Duke agreed, I should do 12 rounds of FOLFOX chemotherapy to be extra cautious and after 6 months of aggressive chemotherapy, I thought I was done. However, 6 weeks later, I woke up with throbbing abdomen pain again.

One test scan and one biopsy later, they found my cancer was chemo resistant and had spread to lymph nodes all over my body. My cancer was now growing along my abdominal wall and the doctors said it was incurable. After three different failed chemo cocktails, I was approved for a clinical trial drug, but before I was able to take it, more cancer and scar tissue grew around my stomach blocking any possibility of drug delivery.

I spent 25 days in the hospital, where I almost died and ended up with a G-J tube for drainage bags. I could only be fed through TPN for 450 days. But finally, the clinical trial drug, Keytruda (now approved), seemed to work. The drug helped shrink the tumor and kept it from growing. After 82 days in the hospital and 10 surgeries, I am better, but I now have pancreatitis, back pain, PTSD, and anxiety. Getting through cancer treatment is challenging and hard, physically and mentally.

I just finished my 93rd treatment, my cancer is stable for now, and I am still fighting.

You can connect and learn more about J.J. through his blog and through Instagram, Twitter, and Facebook

 

Ashley’s Story

On Saturday, June 6 of 2015, I was taking my dog, Bo, to the dog park, and I got into a car accident. Someone had run a red light, made an illegal turn, and unfortunately hit me head-on. My knees hit the dashboard, and I had some serious contusions. I was on crutches for a few weeks, and after that, I thought everything was fine. Little did I know that moment would change my life.

On October 31st, I realized I couldn’t put my foot flat on the floor. I traveled down to Miami for a second opinion of what I fully expected to be a torn meniscus and a cyst because car accidents don’t cause cancer, right!? While there, they performed a biopsy, and I was soon diagnosed with Aggressive Fibromatosis, a form of Sarcoma ­— a type of cancer. The doctors believe the impact from the car accident instigated the growth of the tumor that then sat behind my knee and had grown to the size of grapefruit in a matter of weeks.

Life quickly became a whirlwind of chemotherapy and physical therapy. I had to learn to walk again due to the location of my tumor. I had three chemo-filled years with many side effects and over 20 scans. IV chemo sucked, I had to do 24 intravenous infusions, and I was eventually able to switch to oral chemo, which meant fewer side effects. I had my last oral chemo dose at the end of 2019. Today, cancer is still part of my identity, but it’s no longer my full identity.

You can connect and learn more about Ashley through Instagram

 

Adriana’s Story

The eve before Thanksgiving Day 2019, we heard the words no parent ever wants to hear, “Your child has a mass behind his eye, and it’s indicative of Rhabdomyosarcoma.” Cancer — Rare and aggressive.

Our world was turned upside down. One minute I am attending my children’s preschool Thanksgiving celebrations. Then the next, I am thrust into emergency rooms and learning all about a cancer diagnosis and the harsh life-saving treatments available.

Discovering his cancer wasn’t easy. My son had bumped his head in October and complained of pain in his eye the next day and two days later. After that, he resumed as normal. Although he no longer complained of pain, I noticed that one eye looked a little bit different than the other. It was so subtle that when I visited three different doctors that week, they all sent us home with a clean bill of health. As the week went by, his eye never bruised nor did the slight swelling go away, so my initial concern that it was due to his injury a week before seemed unlikely. Within a couple of weeks, I was seeking consultations with doctors all over again and requesting imaging to see what might be causing slight swelling. Something just felt off to me about the appearance, and I had to trust my intuition.

Finally, almost a month after the first appointment he had, and his third with an ophthalmologist, the original ophthalmologist felt that now she could feel a mass behind his eye. She ordered a rush MRI, but the soonest to be had was two days later, the day before Thanksgiving. On our drive home after the MRI, the doctor called to tell us that we needed to head to the emergency room. We had to travel the next day to find a doctor who wasn’t on vacation for Thanksgiving to expedite the process of diagnosis. Within the week, it was confirmed — he was diagnosed with a 4 cm solid tumor classified as Orbital/Parameningeal Embryonal Rhabdomyosarcoma.

The first week after discovering his tumor, everything moved so fast. From the time I heard the word “cancer,” it felt like my life came to a screeching halt while everything and everyone moved in chaos around me. We were devastated and scared of the reality of his diagnosis.

It was surprising to my son’s oncology and radiation team to see how intricate the tumor was because my son’s vision was perfect and so was his optic nerve. The tumor had decided to just wrap around and follow the optic nerve instead of causing any disturbance to his vision, which made it difficult to diagnose at the early stages. Even after being told “there is absolutely no way anything is behind his eye because his vision is perfect,” I pushed for answers and listened to my intuition that I, as his mother, knew him best.

My son had 42 weeks of chemotherapy and 6 weeks of radiation over 11 months. He had a full response to chemo within 10 weeks and will be celebrating his anniversary of being NED (No Evidence of Disease) on Valentine’s Day. He has been off chemotherapy for four months now, has all his beautiful brown hair back, as well as his energy and childlike zeal for life. We still deal with some after effects from radiation, but we are thankful it’s been very manageable. His resilience is a comfort to my heart and an inspiration to my soul.

As a mom, and a mental health professional, having a child battling cancer was an eye-opener. I had to work through the emotions, the anxiety, and the trauma of his experience and OUR experience as a family. But I experienced first-hand how cancer has a tremendous impact on your physical health, your mental health, and on the health of your relationships inside and outside of your home. I learned that although cancer is “gone” physically, it’s never really out of your life.

You can connect and learn more about Adriana through her website, Family Chemotherapy, where she provides mental health resources for parents and caregivers who are fighting and surviving pediatric cancer. You can also connect with Ariana through Instagram and Facebook

 

Mallory & Cash’s Story

This is my courageous son Caston “Cash” Ward. He lives in Summit, MS, with his older brother (Tucker, 15), and sister (Briar, 5), his father, Cannon, and me, his mother, Mallory. Cash was diagnosed with leukemia on August 11, 2020 — the day after his 4th birthday. Prior to his leukemia diagnosis, Cash was ALL BOY! He was wild and rambunctious and full of life. He had never had a haircut and was known for his long hair and “boy bun.” Cancer may have taken his hair, but it hasn’t touched his lively personality and outlook on life! 

After almost completing his induction phase of treatment for his initial diagnosis of B cell ALL, his health began to deteriorate, and his lab work indicated the treatment was not working. It was at this point further that diagnostic measures were taken, and it was discovered he, in fact, had AML. His cytogenetic results and chromosome changes discovered through extensive testing were puzzling.  Although no clear-cut answer was available, the revised plan was to begin the appropriate treatment immediately in hopes of lessening the disease, then proceeding with a bone marrow transplant. 

The induction phase for AML started during the last week of September 2020. The treatment itself was extremely challenging, the chemo regimen was vigorous, and the disease burden was very apparent. Besides the typical side effects related to chemotherapy, he battled prolonged, unresolved fevers, bone pain, and within 5 days into treatment, a severe case of mucositis (more commonly known as cancer mouth sores). He was extremely sick but maintained his good attitude and positive outlook. Even on the very worst days, his sweet smiled shined through. His rough and tough personality, along with overwhelming prayers, pulled him through the trenches! 

Thankfully, he achieved remission after the first round. This was very encouraging, and even though he was typed and matched with four potential bone marrow donors, his team of doctors felt it was less likely that he would need a transplant. The decision was made to proceed with 4 more rounds of chemotherapy, pending a bone marrow biopsy with no evidence of disease after each round. 

Because the AML therapy he required was very intensive and aggressive, he completed each round in an inpatient setting. The protocol includes between 5-10 consecutive days of chemo (depending on the phase) and then a period of 2-3 weeks for his bone marrow to recover. As long as he is well and his counts are in the appropriate range, he is allowed a few days at home between the end of one round and the beginning of the next. These cycles last, on average, 28 days. He has missed being at home but has effortlessly made Children’s of Mississippi his home away from home. Although there are restrictions on certain activities because of COVID, he has managed to (safely) make the very best of the situation. He has shared his knowledge and love of dinosaurs and ninjas with many, had roaring competitions, races, and nerf wars with his nurses. He has driven his remote-controlled cars and played soccer in the halls, and in true Cash fashion, shined his one-of-a-kind light on new and lifelong friends that he has met and encouraged along the way. 

As he is about to embark on his 5th and final round, the best advice I could give anyone that has a child battling cancer is to always advocate for your child.

Cash’s team of doctors is composed of wonderful professionals that have navigated this whole situation with excellence, but I knew there had to be another solution for the extreme case of mucositis that he developed during the first round, besides a morphine pump. During this time, I began researching so that I could present them with other possible avenues of supportive care for him. It was during this time that I found the product (Healios) that I believe has helped more than anything during his subsequent rounds of treatment. It has made such an improvement that he has had no more mouth sores! This has also cut down on the recovery portion of each round by reducing the risk of infection and the use of additional medication for pain and pain-related issues, such as high blood pressure. The response and result, which was noticed immediately by Cash’s doctors, was very impressive, almost unbelievable. Because of this, his doctor is taking steps to make this available for other pediatric oncology patients that are at risk for mucositis. As his mother, it was absolutely heartbreaking to see him suffer, but I know now that it was not in vain. Cancer will not define him. It will, however, always be a part of his story, and because of this, I feel Healios will be a part as well. I am forever thankful for the discovery of this miracle product — his “medicine water,” as he calls it. 

Through all he has faced, his exuberant personality, his vivacious spirit, and his kind and loving demeanor remains and is evident to all that cross his path. He has always been tough, but he is now, without any doubt, a true warrior. Not only on World Cancer Day, but everyday Cash is an inspiration to so many. He never shies away from telling anyone that he is a brave boy... and a brave boy, he certainly is!  

You can follow and learn more about Mallory and Cash through their Facebook page Roaring for Cash.