Mouth Sores Impact on Quality Of Life
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
Interview
On World Cancer Day, what would you like to tell other cancer warriors and survivors?
On this day, I would tell others to keep on and “Sparkle On”. To “Sparkle On” means that even in your most challenging days, the days where you are bald, have dark circles, and your skin hurts so badly you can hardly move, you have to sparkle from inside. You will not feel pretty on the outside but you will always have that inner sparkle inside your heart that will make you shine!
Cancer treatment comes with many side effects. What was your worst side effect and what product helped you the most?
I’ve been through a slew of side effects and definitely have found many amazing products and some not so great brands. I would say that the worst side effects for me were physical and appearance-based ones, from losing my hair to burning with radiation. For me, I feel using CBD in my daily routine saved my life. RX Canna Care provided me with whole flower CBD, which helped to decrease my nausea, increase my appetite, and it really helped my body heal itself. The greatest product that I encourage patients to buy is their Canna Cream which not only heals scars etc. but also prevented me from burning through radiation! Rx Canna Care was a Godsend and they helped me most through my healing journey.
What is your number one tip for someone going through cancer treatment?
It’s so cliché, but don’t give up! Every day when you feel your worst, try to do something that makes you feel normal or pretty. For me that was covering my head in glitter, putting on lipstick, gluing on lashes, and going out with my pink high heels! Remember that even though your reflection looks like a stranger, YOU are still you in your heart... and one day the “new you” will be looking back at you in the mirror stronger, healthier, and more beautiful than ever before!
What is the best advice you received while going through cancer treatment?
The best advice I received while going through treatment was to accept help when offered to you. Of course, we all want to be independent and hide our exhaustion, pain, and fear... but it is soooo healthy to share what’s really going on, especially with your caregiver, family, or close friends. Accept their help — and when you’re better you can return the favor️.
Meghan’s Story
J.J Singleton | Colon Cancer Warrior
Interview
On World Cancer Day, what would you like to tell other cancer warriors?
On World Cancer Day, I want to tell all the cancer warriors to keep going and never give up. It’s ok to ask for help when you are too weak. It’s ok to ask for help when you don’t know if you can keep going — reach out and let others help keep you fighting.
Cancer treatment comes with many side effects. What has been your worst side effect and what product has helped you the most?
I’ve had just about every side effect imaginable, but mouth sores, throat sores, cracked lips, and tongue lesions have been awful and a constant throughout my 5+ years of fighting cancer. So far, Healios has been the best in helping control and heal the mouth sores.
What is your number one tip for someone going through cancer treatment?
My biggest tip for other cancer warriors is to find your support group. Find people who will be there for you and let you cuss, cry, yell, and make inappropriate jokes just to get all your emotions out.
What is the best advice you have received while going through cancer treatment?
The best advice I’ve gotten is to let what you have been through go but continue to battle and let the fight be your strength and your platform to help. There is a reason you are still alive, don’t waste it. Also, don’t listen to anyone you don’t want to. If you are sleepy then sleep, if you are hungry, eat. It’s ok to eat dessert at 3 AM if you want.
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 Williams | Fibromatosis Sarcoma Warrior
Interview
On World Cancer Day, what would you like to tell other cancer warriors?
Fighting cancer may be the hardest thing you ever do. Be kind to yourself.
Cancer treatment comes with many side effects. What has been your worst side effect and what product has helped you the most?
Nausea. I couldn't keep down any food, but I was nauseous when I didn't eat! Anti-nausea medicine helped, but peppermint essential oil saw me through some tough days. I also struggled with Hand and Foot Syndrome. I would not have survived without memory foam shoes.
What is your number one tip for someone going through cancer treatment?
Rest. Don't worry about "doing cancer well." You already are! Your body is under attack, help it be as strong as it can by giving yourself permission to rest.
What is the best advice you have received while going through cancer treatment?
Keep a journal. It doesn't have to be well-written. Cancer treatment is such a significant part of your story - and often times we aren't present in it. Write down as much as you can. I reference my journals almost every day.
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 Lewin | Cancer Warrior and Mental Health Advocate
Interview
On World Cancer Day, what would you like to tell other cancer warriors?
You are not alone. It may feel like nobody truly understands you, but connecting with other cancer warriors and survivors makes it harder to feel so isolated in this season of your life. There is comfort in connecting with those who understand you without the need to explain yourself.
Cancer treatment comes with many side effects. What has been the worst side effect and what product/solution helped you and your family the most during this time?
The worst side effect has been my mental health. Although I had family beside me, it was hard to not feel incredibly isolated. My son had a physical battle, while I had an internal battle of trying to balance life, not let my emotions ruin me, and provide a strong united front for my children with my spouse. The anxiety and fear of not knowing if my son would survive or possibly face a relapse was crippling. It made me withdraw into myself, even when people tried to offer support. Keep in mind, as a therapist myself, I still used tools that I had in my belt and it was still an overwhelming experience filled with highs and very deep lows.
What is your number one tip for a parent with a child going through cancer treatment?
Seek a therapist trained in trauma and EMDR therapy DURING the treatment phase. For you and for any children involved. There are interventions to help you process and cope more effectively with the impact of a cancer diagnosis in the family. The longer you wait, the bigger the snowball, and the deeper the impact on your emotional health long term.
What is the best advice you have received while helping your son through cancer treatment?
Take it ONE day at a time. One MOMENT at a time. One MINUTE at a time. And DON’T compare your cancer to anyone else’s because your body’s ability to heal is unlike anyone else’s.
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 Ward | AML Warriors
Interview
On World Cancer Day, what would you like to tell other cancer warriors?
Stay strong, and don’t ever give up!
Cancer treatment comes with many side effects. What has been your son’s worst side effect and what product helped him the most?
His worst side effect was severe mucositis during his first round of AML treatment. As soon as he was able to swallow, I started giving him Healios, and it’s now part of his daily regimen. He hasn’t had another mouth sore since even on chemo drugs that are known for causing mouth sores like high dose Cytarabine and Mitoxantrone.
What is your number one tip for a parent with a child going through cancer treatment?
Advocate!! So many resources are available, there are communities of parents and caregivers online and on social media. There is so much information, you just have to look! Research and reach out to get the answers to your questions and make your concerns heard!
What is the best advice you have received while helping your son get through cancer treatment?
Keep a notebook with you at all times! You never know when a question may come to you. Use the note app on your phone even. There is no dumb question when it comes to your child’s health and treatment so ask all the questions!!!
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.