For Bhavika Taunk, life took a radical turn in 2017 when her four-year-old son, Kabir, was diagnosed with acute lymphoblastic leukemia. After a bone marrow transplant, he went on an aggressive chemotherapy regimen for two years. Kabir relapsed twice, but has been in remission since 2020. Bhavika tells the story of how she cared for her son and how she reaches out to other parents of children diagnosed with cancer. Bhavika, her husband and two young sons returned from a Disney cruise in April 2017, and both sons felt sick. While her two-year-old son soon got well, things went from bad to worse for four-year-old Kabir. He complained of bone pain, first in his wrists, then his ankles, to the extent that he could not walk. Then he suffered from intermittent fevers and appetite loss. Kabir was taken to a hospital, where after blood tests, Bhavika was told that a bad virus had settled into her son's bone marrow and that he had been diagnosed with acute lymphoblastic leukemia. She called her husband with the awful, collapsed on the floor and cried. Bhavika said this was the most life-changing event of her life. She went on to say the degree of helplessness accompanying such a diagnosis is overwhelming. Up until Kabir's diagnosis, she thought she could fix anything in his life that presented a challenge. Bhavika says the biggest lesson with a child's cancer diagnosis is the total lack of control and it is the worst imaginable feeling. Bhavika says when caring for a child with cancer that words are very important. She stresses that she doesn't believe in "hollow encouragement because it is very invalidating to the patient." She says a parent cannot tell their cancer-stricken child that everything is going to be okay. Kabir has been in remission since 2020, but still requires a great deal of attention and medical care. Bhavika Taunk wants very much to come to the aid of parents of a child diagnosed with cancer. She advocates for parents of Facebook and Instagram, while strenuously calling for increased funding for pediatric cancer patients. Additional Resources: Bhavika on Facebook: https://www.facebook.com/bhavika.v.taunk Bhavika on Instagram: https://www.instragram.com/btaunk/ Bhavika's small business supporting pediatric cancer: Birdsong Tea – Tea With A Purpose
In 2021, Brian Vesall noticed some pain in one of his testicles when getting in his car. He sought medical attention, which led to his getting an ultrasound. After briefly looking at the scan, a urologist confirmed to Brian that he had Stage 2A testicular cancer. He underwent an orchiectomy to remove the cancerous testicle, followed by an aggressive chemotherapy regimen of bleomycin, etopiside and cisplatin. But he wasn't done. Brian also underwent an additional surgical procedure to remove approximately 30 lymph nodes. As daunting as his treatment was, Brian chose to address it with a sense of humor, which he still has after achieving survivorship and advocating for other men diagnosed with testicular cancer. Brian's cancer journey began when he felt pain in a testicle as he was getting in his car. Upon further inspection, he noticed a "hard spot on one side." He immediately went to see his primary physician, who sent him to a urologist. The urologist called for an ultrasound and only minutes after seeing its results told Brian he had Stage 2A testicular cancer. The diagnosis was confirmed with Alpha-Fetaprotein and BHCG, or, Human Chorionic Gonadotropin tests, whose results were far above the normal range. Addressing his cancerous testicle meant just one remedy, an orchiectomy, surgery that would remove the testicle. Diagnosed on September 27, 2021, Brian had the procedure done just three days later. He was told to avoid any lifting and really, just about any type of strenuous physical activity. In November 2021, the surgery was followed by three rounds of BEP chemotherapy, which stood for bleomycin, etopiside and cisplatin. Brian said he suffered the usual side effects, including cognitive issues, fatigue and hair loss. In addition, Brian Vesall had to undergo an additional surgical procedure known as RPLND, or Retroperitoneal Lymph Node Dissection in June 2022, to remove approximately 30 lymph nodes Brian's health is pretty much back to normal, but a byproduct of his treatment regimen is that he suffers from retrograde ejaculation, meaning that semen travels backward into the bladder during orgasm instead of exiting the penis. By way of advice, Brian Vesall says if you experience the symptoms of testicular cancer, you should act right away, and at all times, be your own advocate Additional Resources: Support Groups: Man Up To Cancer: https://www.manuptocancer.org The Testicular Cancer Awareness Foundation: https://www.testicularcancerawarenessfoundation.org Brian's Speech at TCAF's San Diego Conference: https://www.testicularcancerawarenessfoundation.org/blog/tcc-2024-vesall Brian's Appearance on the TCAF "It Takes Balls" podcast: https://www.testicularcancerawarenessfoundation.org/blog/brian-vesall-it-takes-balls-podcast-guest
Marcel D'Allende was in outstanding health, an avid hiker in the mountains overlooking her hometown of Cape Town, South Africa. However, in October 2021, she began to experience shortness of breath and extreme fatigue. That led to a diagnosis of Stage IV non-small cell adenocarcinoma, or lung cancer. Determined not to let cancer define her, she underwent a treatment regimen of radiotherapy, then chemotherapy with carboplatin and pemetrexed, and immunotherapy with durvalumab. In September 2022, a PET scan revealed Marcel was cancer-free. It took a little while for her to get back up to speed, but has returned to an active lifestyle, and every weekend, you can find her hiking the mountains. Marcel thought she was in terrific health, but in the fall of 2021, suddenly she found herself out of breath on a recurring basis. Her difficulty with breathing became so acute that shortly after beginning a weekend hike with friends, she had no choice but to turn around and return to the base of the mountain. Things worsened when she had frequent coughing spells. She was seen by her general practitioner, who recommended she see a pulmonologist. The pulmonologist called for a CT scan, which revealed a tumor on a lung, and a diagnosis of Stage IV lung cancer in January 2022. Marcel, who during her adult life smoked cigarettes off and on, immediately thought of her father, who passed away from lung cancer in 2000. She was afraid she would suffer the same fate. However, her doctor said that her father's fate didn't have to be hers because of major advances in medicines and technologies in the past twenty years. She was determined to not let her life be defined by cancer, saying at all times, one on a cancer journey must have hope. At the same time, she says one can be hopeful without being delusional. Her diagnosis was difficult enough, but she soon felt the sting of the stigma that often accompanies a lung cancer diagnosis. When informing friends about her diagnosis, many of them told her should not have smoked. Marcel's treatment begins with six weeks of radiotherapy treatment, which she thought wasn't so difficult. Next was six cycles of chemotherapy, specifically carboplatin and pemetrexed. The worst side effects she experienced were nausea and fatigue. Then, Marcel's oncologist introduced her to a newly-approved form of immunotherapy called durvalumab. It is usually prescribed for a duration of twelve months, but she was taken off the immunotherapy at the nine-month mark because spots were detected on her lung. The spots cleared in March. In September, Marcel D'Allende underwent a PET scan that showed she was cancer-free, which she has been to this day. She had to start slowly, but Marcel's health is back to normal, and she has returned to her weekend home, hiking trails outside Cape Town. Additional Resources: Support Group: Cancer Association of South Africa https://www.cansa.org.za Marcel's Written Account of her Cancer Journey: https://cansa.org.za/breaking-the-silence-around-lung-cancer/
In November 2019, Margo Wickersham noticed blood in her urine. Three months later, she was diagnosed with two types of bladder cancer. After an aggressive chemotherapy regimen, she underwent a radical cystectomy and a hysterectomy in June 2020, resulting in the removal of her bladder, uterus and ovaries, all this during the quarantine phase of the COVID pandemic. Ever since, Margo has been cancer-free, but she had to get fitted with a stoma bag and had to learn how to manage it. The bag is an annoyance, but she considers it a small price to pay in order to stay alive. When Margo first noticed blood in her urine, she sought medical attention, thinking she had a urinary tract infection. It turned out she didn't have a UTI, but she still thought something was wrong. She underwent a cystoscopy, which captured a photo of a cauliflower-shaped tumor in her bladder. Next up was a biopsy, which indicated she had Stage One bladder cancer. Her urologist prescribed BCG immunotherapy. Margo sought a second opinion and her doctor ruled out BCG, because further probing turned up a second type of bladder cancer, plasmacytoid, and said it could not be addressed with BCG. He called for an aggressive chemotherapy regimen. He also said in addition to a radical cystectomy, which would remove Margo's bladder, he said a hysterectomy would be necessary, a procedure that would remove her uterus and ovaries. Both were performed in June 2020. Because that was during the quarantine phase of the COVID pandemic, neither Margo's husband nor members of her family could visit her. After the procedures, Margo was cancer-free. However, her life would never be the same after she had to wear a stoma bag into which her urine would go. Sometimes the bag leaks when filled beyond its capacity. She accepts this as her new normal and says she can deal with it, but has to think ahead in terms of access to a bathroom. By way of advice, Margo says one's primary emotion should be that of hope and not stress. Additional Resources: Support Group: Bladder Cancer Advocacy Network https://www.bcan.org Margo's Book, available on Amazon and Kindle: Gratitude in the Storm – When Not Dying Is Enough to Keep Fighting Margo's merchandise line: www.ThriverSurvivor.shop, with a portion of the revenue going to the Bladder Cancer Advocacy Network, to fund bladder cancer research
When she began experiencing severe bruising and fatigue and turning pale in late 2013, Casey Kang sought medical attention. This led to a diagnosis of acute lymphoblastic leukemia. She was placed on an aggressive, 18-month chemotherapy regimen, which included doxorubicin and methotrexate. Casey relapsed three times during which she was placed on an experimental immunotherapy. All told, she spent 168 days in a hospital, but Casey achieved survivorship. She is now a coach who helps women diagnosed with cancer through the physical, mental and emotional challenges that occur after treatment. When Casey Kang experienced various aches and pains at the end of 2013, she thought they were tied to holiday- or work-related stress. She sought medical attention, was prescribed ten days of antibiotics, and was told to return in two weeks. During the ten days, things got worse. She was stricken with extreme fatigue, bruising, vision issues and her turning pale. While this went on, she continued to go to work. She underwent blood tests, and they revealed she had leukemia. Even before the test results came back, her care team called for a bone marrow transplant, so sure were they that she had cancer. Casey said her cancer was subsequently diagnosed as acute lymphoblastic leukemia. Because of its aggressive nature, she was put on an aggressive, 18-month chemotherapy regimen. It included doxorubicin and methotrexate. She experienced two relapses and was prescribed an experimental immunotherapy. Multiple hospital stays totaled 168 days. During that time, Casey learned how mentally tough she was and is. As much as she disliked the time in the hospital, she was sure to create a routine that would get her through the day. Casey used the hospital floor's exercise bike and walked laps around the floors, with 17 laps equaling a mile. Despite a grueling journey, Casey Kang achieved survivorship. She is active on social media, as she works tirelessly to aid woman diagnosed with cancer to make them physically, mentally and emotionally strong when dealing with life after treatment. As for herself, she says her overall is better than it was before her diagnosis. Additional Resources: Casey's Website: https://www.thehappierhustle.com Casey's Free Guide: https://casey-head.mykajabi.com/free-guide
Stacy Martin says genetic testing saved her life. The testing indicated she had the CDH1 mutation. The mutation gave her an 80 percent chance of getting gastric cancer and a 60 percent chance of breast cancer. She opted for a prophylactic total gastrectomy to remove her stomach and addressed the possibility of breast cancer with a bilateral mastectomy. Without a stomach, Stacy has had to change the way she eats, requiring food every two hours, and having to completely chew everything she eats. Despite this live-changing surgery, Stacy is leading a healthy and happy life. Unlike most people with cancer, Stacy's diagnosis was not preceded by symptoms. Her mother had already been diagnosed with Stage IV uterin cancer. That prompted Stacy and her siblings to undergo a genetic panel test. It revealed Stacy had the CDH1 mutation, which meant she an 80 percent chance of getting gastric cancer and a 60 percent chance of breast cancer. She had three options but chose to be proactive with a prophylactic total gastrectomy in 2019, a procedure that removed her stomach. It was after the surgery that pathology revealed Stacy had gastric cancer in her removed stomach. After successfully addressing the possibility of stomach cancer, she did the same with breast cancer with a bilateral mastectomy in 2020. Stacy Martin said the toughest part of her cancer experience wasn't the treatment, but what she dealt with upon its completion. She said she had to learn how to eat, and that without a stomach, she had to eat every two hours. While she took snacks with her wherever she went, she had to alternate between snacks and something more substantial, making sure she got enough protein and carbohydrates. Anything she ate had to be completely chewed because she no longer had the gastric juices in her stomach that break down food. The only thing she can't eat are raw oysters because she says they are impossible to chew. Stacy says genetic testing saved her life but admits it is not for everybody because the decision to go forth with such testing is a deeply personal decision because some people don't want to know what the tests could reveal. Despite her cancer journey, Stacy lives a happy life. She resumed her passion of hiking near her home in Chattanooga, Tennessee, and consumption of nuts resulted in her establishing Seahorse Snacks, which she operates out of her home. Additional Resources: Seahorse Snacks: https://www.seahorsesnacks.com No Stomach For Cancer: https://www.nostomachforcancer.org
In 2019, Jonathan Gegerson sought medical attention went he felt a lump on the right side of his neck. After a couple of scans and a biopsy, he was diagnosed with salivary duct carcinoma, a rare form of head and neck cancer. Jonathan survived, but not before enduring 67 sessions of radiation, 12 cycles of chemotherapy (carboplatin, taxol, herceptin) and seven surgeries. He still undergoes a targeted therapy on a monthly basis, and the surgery has affected his speech and his diet, but Jonathan has resumed an active lifestyle that includes skiing and hiking. Jonathan Gegerson thought his health was outstanding. He was an active skier and liked to hike up Colorado's 14ers (mountains whose peaks exceed 14,000 feet), but was perplexed when he discovered a lump on the right side of his neck. He did not waste any time seeking medical attention and went to his primary care physician. She conducted a physical examination and asked if Jonathan had recently undergone a root canal or some dental procedure that could result in an infection. When he said no, the doctor sent Jonathan to an oncologist, who called for a CT scan, a PET scan and a biopsy. That's when he was diagnosed with head and neck cancer, even though at the time doctors could not specify what type of head and neck cancer. His doctor in Colorado said Jonathan would need to undergo surgery, followed by radiation treatment and chemotherapy. When Jonathan learned his care team had no experience with dealing with his type of cancer, he sought a second opinion from MD Anderson in Houston, Texas. The doctors at MD Anderson suggested the same regimen, but Jonathan switched to them because they had experience dealing with salivary duct carcinoma. His care team told him his treatment would result in a tightening of his face and would affect his speech, in addition to his ability to chew and swallow. The chemotherapy regimen included carboplatin, taxol and herceptin. He said the chemo left him weak and tired, especially two days after each round of treatment. This, he said, was very frustrating because he was accustomed to being active. During this time, the best he could do was go on short walks. When Jonathan experienced a recurrence, he was placed on a targeted therapy of kadcyla and herceptin. He eventually achieved survivorship but must continue to be on a monthly targeted therapy of unhertu and herceptin. Jonathan Gegerson says his health is approximately 75 percent of what it was before his diagnosis, but he feels he blessed that he is living, is back to hiking and skiing, and hopes to continue skiing until he is 90 years old. Additional Resources: Jonathan's Book: "Perspective C," available on Amazon and Kindle https://a.co/d/4iW9BQ6
It took two chemotherapy regimens, but Luke Mutter survived a rare form of bile duct cancer. A CT scan found a 14cm tumor in his liver. At that time, his care team told him he had cancer, but it could not identify the type of cancer. He was put on a systemic chemotherapy cocktail of folfirinox and oxaplatin, which attempt to kill the tumor. When that didn't work, Luke learned he was a candidate for a hepatic artery infusion, which included chemo far stronger than his first regimen. Luke has achieved survivorship and is very thankful to be to lead a healthy lifestyle. Considering he was eventually diagnosed with bile duct cancer, his journey in an unlikely place. His feet. He saw a doctor thinking that as an active runner, he had plantar fascilitis. Walking was very painful, as was laying down on his stomach. That is what led to a CT scan, revealing a 14cm tumor in his liver. Luke saw an oncologist and was told he had cancer, but the doctor could not identify what type of cancer. Nonetheless, the doctor said Luke needed to go on a regimen of systemic chemotherapy, which would affect his entire body, a regimen that sought to kill the tumor. The cocktail consisted of oxaliplatin and folfirinox. He received a dosage every two weeks for 18 months. The tumor withstood the chemo, and Luke went to another hospital, where he qualified for a surgical procedure to install a hepatic artery infusion pump. It directed chemotherapy just to the liver at a dose 300 times stronger than the systemic chemotherapy. Luke Mutter achieved survivorship and is thrilled to be back at work as a sales consultant. He also considers a major blessing that after chemotherapy he can taste food, resume exercising and the ability to make his family and friends laugh. By way of advice, he said during his journey, as much as he could, he decided to take charge, by controlling his mindset, exercise, diet and sleep, or as he like to call the group his MEDS. Luke also serves as a mentor to those diagnosed with cholangiocarcinoma. Additional Resources: Support Group: The Cholangiocarcinoma Foundation https://www.cholangiocarcinomafoundation.org
It was a stressful journey, but Linda Trummer survived Stage IV mantle cell lymphoma. In 2015, she went to her primary care physician after discovering a lump on her jaw line. That led to a diagnosis of a slow-moving blood cancer, MALtoma. However, further tests revealed a lump under her left arm and the diagnosis was upgraded to Stage IV mantle cell lymphoma, a rare form of blood cancer. She underwent R-Hyper-CVAD, a multi-faceted chemotherapy regimen and just two months later was declared to have No Evidence of Disease. Linda still suffers from the many side effects of her regimen, but is happy to be alive, especially when her prognosis indicated she would only live for another 18 to 24 months. Linda was close to 60 years of age when she first noticed a lump on her jaw line. She initially attributed it to her getting old, but when one day she saw the lump was growing, she sought medical attention. A PET scan showed that she had MALT lymphoma, also known as MALtoma, a cancer associated with the mucosa-associated lymphoid tissue. Linda switched oncologists and the second oncologist called for additional tests. They revealed a lump under her left arm, and she was diagnosed with Stage IV mantle cell lymphoma. Linda was placed on a chemotherapy regimen which included rituximab, doxorubicin, cyclophosphamide, vincristine, dexamethasone and cytarabine. That was followed by six lumbar punctures of methotextrate. Through it all, Linda Tremmer was an active patient. She sought to help other cancer patients on her floor by setting up an arts class. She also wrote poetry and with the aid of a cousin in Oregon, the poetry was set to music, which was played for the patients, who enjoyed getting care from a fellow cancer patient. Linda's regimen led to her being declared NED after two months, but she needed to stay on it and suffered from numerous side effects. She was placed on medication for depression and PTSD, although she says the latter rarely presents a problem. When she was diagnosed, Linda was told she would live another 18 to 24 months, and prepared to die. She sought palliative care and was placed in home hospice. She completed her will, set up cremation and wrote farewell letters to dear friends. But when she got to the 24-month mark, she realized she was still very much alive and started concentrating on living and not dying, which she said was much tougher than it sounds. These days, Linda is happy to be alive, enjoys living with her three dogs and two cats, and advocates for cancer patients through the Leukemia & Lymphoma Society and has a support group on Facebook. By way of advice, she says anyone diagnosed with mantle cell lymphoma should make sure they find an oncologist who knows how to treat mantle cell, which is much easier today than it was in 2015. Additional Resources: Support Group: The Leukemia & Lymphoma Society https://www.lls.org
In 2021, one day away from his fortieth birthday, Ty Cedars felt pain in one of his testicles and noticed it was enlarged. He contacted his physician, asking to be seen. The following day, en route to a birthday celebration, Ty received a call from his doctor, requesting that Ty come right away. The Alexandria, Louisiana-based schoolteacher soon underwent an ultrasound, then was directed to a urologist, who told Ty that he had testicular cancer. He took the news calmly and was told by the doctor that this was a very treatable cancer, but that he would have to go on a chemotherapy regimen called BEP. That is a cocktail consisting of cisplatin, beleomycin and etopicide. Ty said the worst part of the regimen was severe nausea. He vomited acid into his throat, which took away his voice. Ty also said he was extremely weak, and that resting wasn't easy. He could only watch television for ten to twenty minutes at a time. Even though he had a stack of books ready to read, reading was out of the question because it was too hard to focus on the small print for much more than a paragraph. As a singer in the local chorale, Ty found tranquility in choral music, which he accessed on YouTube. The chemotherapy did its job and Ty was told there was no evidence of disease. He was able to return to the classroom, can go to the gym, and his health is very close to what it was prior to his diagnosis. However, he occasionally suffers from neuropathy, and because of the damage to his throat from the chemo regimen, his singing voice has dropped from a baritone to a bass. Other than that, Ty Cedars is thrilled with the life he is leading. By way of advice, he says if you notice something with your health that seems abnormal, don't take chances and see your doctor. Because he was proactive, his cancer was detected at an early stage. Additional Resources: Support Group: The Testicular Cancer Society: https://www.testicularcancersociety.org
A clinical exercise physiologist by trade, Erin Bloodworth sought a career change and became an exercise oncologist. This enabled her to take her expertise and apply it to helping cancer patients, which she does through Northwestern Medicine Living Well. Erin says whether a patient is going through cancer treatment or is post-treatment, she puts the patient through an individualized exercise program. She assesses the patient's health with tests tied to their ability to grip objects and go from a sitting position to a standing position and back. Erin says the combination of exercise with a cancer treatment can aid the patient's physical, mental and emotional health. Through Living Well's website, Erin Bloodworth can share her expertise with anyone in any location. Additional Resources: Northwestern Medicine Living Well: https://www.livingwellcrc.org
For Stewart Greenfield, the third time was the charm. After checking pictures of his bladder in 2016, two doctors told him he didn't have long to live; a third doctor told him he had Stage IV metastatic bladder cancer, but insisted he needed to be treated. The cancer had burned a hole in his bladder and attacked lymph nodes from his groin to his neck. Treatment included a chemotherapy cocktail of cisplatin and gemcidibine, plus qualifying for an immunotherapy, novolumab. It was a smashing success. Stewart says his urinary function is normal and he is able to resume his active lifestyle, which includes cycling and scuba diving. A semi-retired kitchen designer, Stewart Greenfield of Scottsdale, Arizona, thought he was in good health when he went for his annual physical in 2016. He was an active cyclist and scuba diver. However, his doctor said his blood work was "inconclusive." After a second test was labeled inconclusive, the doctor prescribed antibiotics and called for a third blood test a week later. The doctor got a similar result and sent Stewart to a urological surgeon. The surgeon called for Stewart to undergo some scans and upon viewing them, gave Stewart some very bad news. The surgeon did not mention the word 'cancer,' but said Stewart should get his affairs in order. Stewart went to a second urologist who viewed pictures of Stewart's bladder, again did not mention the word cancer, but said the condition of the bladder was so advanced, it was too late to treat it. He had a hole in his bladder and the cancer had attacked lymph nodes from his groin to his neck. Stewart had an appointment with a third surgeon. She said he had Stage IV metastatic bladder cancer. As he attempted to leave, the doctor blocked his path and insisted on treating his diagnosis. At first he resisted, thinking he had received a death sentence, but he agreed to be treated. Stewart was put on a chemotherapy regimen with cisplatin. The regimen was stepped up with the addition of gemcidibine. As the regimen had been successful, he qualified for a new immunotherapy, novolumab. The treatment was a success. Stewart has normal urinary function and again takes part in cycling and scuba diving. By way of advice, he urges those diagnosed with bladder cancer to stay positive, never lose hope and "fight the fight." Additional Resource: Support Group: The Bladder Cancer Advocacy Network https://www.bcan.org
Noelle Gatlin had to endure a lengthy, multi-step process, but she survived Stage II pancreatic cancer. A visit to an emergency department revealed a mass near her pancreas. She was transferred to a hospital, where a second CT scan resulted in her diagnosis. Her care team placed a duodenal stent in Noelle, then a bile duct stent. She next underwent a 12-infusion chemotherapy regimen with folfirinox. Then she was ready for a Whipple procedure, a pancreatic duodenectomy, which was a success. Noelle says because she took care of herself before, during and after treatment, she believes she is now in better health than she was before her diagnosis. In July 2022, Noelle began to experience symptoms associated with food poisoning. At an urgent care, she was diagnosed with gastric reflux, but when stomach became distended, her husband urged her to go to an emergency department. That's where a CT scan revealed a mass near her pancreas. She was next transferred to a hospital. Wanting very much to vomit, but unable to, with the aid of an NG tube, her stomach was pumped. She underwent another CT scan, then an endoscopy, after which a doctor told her she had Stage II pancreatic cancer. A duodenal stent was placed in her small intestine so that food could go around where her tumor had closed off her intestinal tract. Noelle then had a bile duct stent placed from her liver. Before she could undergo surgery, she went on a 12-infusion chemotherapy regimen with folfirinox. Months later came the Whipple Procedure. Hers was a pancreatic duodenectomy. Her gallbladder, the top 20 percent of her pancreas and the first section of her small intestine was removed. The surgery was a success, and soon Noelle Gatlin returned to her job as a special education teacher in Riverton, Utah. She followed instructions from care team and already enjoyed an active lifestyle. This is why she believes her health today is better than it was prior to her diagnosis. Additional Resources: The Pancreatic Action Network (PanCAN): https://www.pancan.org
Laurie Adami seemed to have it all. She was the president of her company, at age 40, she had just had a son and still found time to lead an active lifestyle. However, in 2003, her health took a turn for the worse. She felt a lump in her abdomen, experienced frequent, lengthy sinus infections and chronic fatigue. All this led to a diagnosis of Stage IV Follicular Non-Hodgkin Lymphoma. After six unsuccessful treatment regimens, she achieved complete remission on the seventh try, completing a battle that ran twelve years. When Laurie initially brought her symptoms to the attention of her family doctor, they were dismissed as, at worst, a hernia, and exhaustion due to her demanding schedule; but Laurie insisted there was nothing ordinary about her symptoms and changed doctors. She saw a hernia specialist who ordered a CT scan, which revealed a mass the size of a small watermelon on her abdomen. After a biopsy, Laurie learned she had Stage IV Follicular Non-Hodgkin Lymphoma. At that time, she had no idea of the difficulty and length of the journey awaiting her. The first of six treatments that failed to overcome her diagnosis was in 2006 and called R-CHOP. It was a mix of Rituxan plus Cytoxan, Adriamyacin and Prednisone. Next in 2008 was a clinical trial of Rituxan, along with an HDAC inhibitor. In 2010, Laurie tried Bendamustin, a medication popular in Eastern Europe. When that didn't work, later in the year, she went with Bexxar Radioimmunotherapy. Of the first six regimens, Laurie had the most success with a pi3 kinase inhibitor called Zydelig. For five and a half years ending in 2016, it shrunk the tumor without eliminating it. The tumor returned and for six months ending in September 2017, she tried infusions of Gazvya. On July 16, 2018, her tumor was still around, but Laurie qualified for a Phase II clinical trial of Yescarta CAR-T therapy. Some 29 days later, her lymphoma specialist informed her she was in full remission. Laurie Adami has resumed an active lifestyle, and does plenty of traveling, most of it to public speaking engagements, as she serves as an advocate for the Leukemia & Lymphoma Society. Additional Resources: Support Group: The Leukemia & Lymphoma Society https://www.lls.org
Nicole Scott and her husband, Keith, worked at the same Ohio hospital. When Keith noticed abdominal pain in his left side, he thought it was muscle-related because of the physical nature of his job. The pain radiated to his groin, then what had been random occurrences of the pain became more frequent. Nicole urged Keith to seek urgent care. An emergency room doctor called for a CT scan, thinking Keith had at worst, a hernia. However, the CT scan revealed a mass on Keith's kidney. An MRI and partial nephrectomy resulted in a diagnosis of papillary renal cell carcinoma, a form of kidney. Nicole and Keith were shocked by this diagnosis, but after she got over the shock, Nicole assumed the role of Keith's caregiver. She said without question, the toughest part of her caregiver experience was the emotional piece. At first, there was a tremendous amount of fear and depression, as she thought Keith might not survive, but all the while she told herself she was caring for the love of her life, had to put up a positive front and be a source of encouragement for her husband. Nicole said there was some at-home care involved, but much of her duties consisted of making sure that Keith made it to all of his doctor visits, most notably the successful surgical procedure and post-treatment care. Caregiving can be a round-the-clock challenge, and Nicole said she came close to suffering from caregiver burnout, but she always did what needed to be done, at all times realizing hers was a high-stakes task. By way of advice, Nicole Scott says to anyone suddenly finding themselves in the role of caregiver to take a deep breath and never lose hope. She says a caregiver needs to take of themselves. She says it is "not selfish" to ask a friend to pitch in or to make time for some 'me time,' as that will make a caregiver a better caregiver. Additional Resources: The Kidney Cancer Association: https://www.kidneycancer.org
When Helinka Carr experienced limited rectal bleeding, because it was limited, she never thought her problem could rise to the level of cancer. She also thought the bleeding might be diverticulitis, which had been suffered by members of her family. However, at the urging of her doctor, she underwent blood tests and a colonoscopy. The latter revealed that she had bowel cancer. Thanks to two surgical procedures, she achieved survivorship but has to wear an ileostomy bag. She tires easily, but had the energy to start a line of ostomy lingerie for bag-wearing women diagnosed with below-the-belt cancers. Helinka Carr said when one experienced rectal bleeding for three weeks, that was the standard in the United Kingdom for being a candidate for bowel cancer. Helinka while noticed bleeding in her rectum and in her stool, it didn't exist to the degree that aligned with the accepted standard for bowel cancer. She also said her family had a history of diverticulitis, which also led her to believe that she was not a candidate for bowel cancer. Nonetheless, her general practitioner urged her to get the bleeding checked out. After a series of blood tests, Helinka underwent a colonoscopy and bowel cancer was indicated. Once upon learning of her diagnosis, she immediately refused chemotherapy. She agreed to a regimen of radiation treatment, combined with her self-styled complimentary hearing. It took two surgeries, but her tumor was removed. Helinka detested the radiation therapy, and firmly believes her practicing complimentary healing all by itself could have removed the majority of her tumor. Despite achieving survivorship, the radiation continued to affect her. She suffered from pelvic radiation disease, which robbed her of any feeling in her rectum or bladder, creating major problems any time she had to urinate or defecate. Helinka's care team said she would need to be fitted for an ileostomy bag. At first she was told she would only have to wear it for twelve weeks; but after it was removed, she was incontinent and was told she again would have to wear the bag, this time on a permanent basis. Helinka has figured out a way to manage the bag, go out and enjoy normal activities and get six to eight hours of sleep each night. Helinka's experience inspired her to devise a line of ostomy lingerie. It is attractive underwear destined for bag-wearing women diagnosed with below-the-belt cancers. By way of advice, Helinka Carr says regardless of your cancer diagnosis, you need to fiercely advocate for yourself. That means asking lots of questions, and if your doctor cannot sufficiently answer your questions, to get another doctor. Additional Resources: Helinka's lingerie line: Unspokenrosebud-Etsy
Guy Nakoa has survived two diagnoses of Stage IV breast cancer. He initially felt a lump in his breast while showering in 2000. Because it wasn't causing him and because he didn't think could not get a type of cancer associated with women, I went more than a decade before he chose to have the lump checked out. In 2014, he sought medical attention, he was diagnosed and in 2016, he had the lump removed; but in 2020, the cancer returned. He was hoping it could be removed with chemotherapy and radiation treatment, but over his initial objection, he agreed to a mastectomy of his left breast in 2024. For the rest of his life, he will need to be on two medications, ibrance and letrozole. Guy says from time to time he experiences fatigue but is very happy to be alive. Guy Nakoa is from Wailuku on the island of Maui in Hawaii, but he has worked all over the world as a chef. He was on a job in Alaska in 2000, when while taking a shower, he was shocked to feel a lump in his left breast. Guy didn't tell anyone about it because it wasn't causing him any pain, and he felt too embarrassed to admit he may have a type of cancer that is generally associated with women. He finally decided to have the lump examined in 2014. His doctor didn't seem to think there was anything cancerous and told Guy not to worry about it. Guy was misdiagnosed and he believes that, like he was, his doctor might have had difficulty connecting the lump with cancer because Guy is male. Guy went to another doctor, and in 2016, he underwent a biopsy, which revealed he had breast cancer. Guy Nakoa had the lump removed in 2016. He underwent a chemotherapy regimen in 2017 and again in 2018. He says he lost his sense of taste, his anxiety level went "through the roof" and he had a tough time getting to sleep. The surgery was a success, but in 2020, the cancer returned. Guy wanted to again treat it with chemotherapy and radiation, but his doctor urged him to get the breast removed. Guy eventually relented and the mastectomy took place in 2024. Guy says these days, he can do just about anything he could do before he first felt the lump, but fatigue sometimes sets in, in a way it didn't prior to his diagnosis. By way of advice, he is quite adamant that, regardless of what seems irregular, if you notice something, anything abnormal about your health, to immediately seek medical attention. Additional Resources: Support Groups: The Male Breast Cancer Global Alliance https://www.mbcglobalalliance.org Man Up To Cancer https://www.manuptocancer.org HIS Breast Cancer Awareness https://www.hisbreastcancer.org
Sheila Romanski is with us today after overcoming two diagnoses of breast cancer and the removal of a tumor in her left shoulder thanks to an autologous stem cell transplant. She tells the @CancerInterviews podcast her initial of Stage 1A breast cancer in 1996 came after her doctor suggested a routine mammogram at age 36 when at the time mammograms were not performed on women that young. Radiation treatment successfully addressed that diagnosis, but the following year, the cancer had metastasized to her shoulder. That brought on the stem cell transplant, plus chemotherapy and more radiation. All seemed well until 2008 when the breast cancer returned as Stage 4 triple negative infiltrating ductal carcinoma. Shiela opted for a double mastectomy with reconstruction, which was followed by a second, more aggressive form of chemotherapy. She has been pronounced NED (No Evidence of Disease), and now enjoys a healthy lifestyle, leading a non-profit that aids cancer victims. Sheila Romanski advises everyone to do self-examinations for breast cancer. She admits had she done so, her breast cancer would have been caught sooner. In 1996, it was rare that 36-year-old women went in for routine mammograms, but Sheila's doctor suggested such an exam. Thanks to that suggestion, a 2cm tumor was found. She underwent a lumpectomy and radiation treatment. While it appeared cancer was in her rear-view mirror, in 1997, a lump was found in her collar bone area. That was treated with four chemotherapy treatments and autologous stem cell transplant, a procedure involved her own stem cells. The chemo and the transplant last four months. For Sheila, this time in her life was very challenging. She was no only battling cancer, but she was raising four small children. However, she says she was able to get through because of support from her friends and her church, and because attending to the needs of her kids took her mind off cancer. Sheila's health appeared to be on the right track until 2008 when another routine mammogram revealed micro-calcifications in the same breast as her original diagnosis. She decided a double mastectomy would be her best option. It would include a procedure called a diep flap, which involves taking skin from other parts of the body. However, her surgeon said Sheila would have to lose twenty pounds before diep flap could be performed. It took Shiela ten years to lose the weight and by that time, her surgeon said she no longer performed diep flap. However, she said she could get Sheila "fixed up" and in 2021, thirteen years after mastectomy, reconstruction was complete. Sheila Romanski has gone on to found Crystal Roses, a non-profit that seeks to aid those diagnosed with cancer. Additional Resources: Support Group: Crystal Roses https://www.crystalroseshelps.com
In 2015, Daniel Garza experienced bloating and difficulty completing a bowel movement. A subsequent digital rectal exam revealed a mass on his sphincter, which led to a diagnosis of anal cancer. A surgical procedure got rid of the cancer, but it also resulted in his losing half of his sphincter and the temporary presence of a fistula, a tear which was like a second anus. He underwent a chemotherapy regimen of 5-fluorouracil, followed by radiation treatment, but another major challenge awaited Daniel, as he had to wear an ostomy bag, which he does to this day. He deals with the bag and has continued his work as an advocate for those with HIV and anal cancer, in addition to being an actor and a comic. Daniel Garza thought he was in good health until he was plagued by a nasty variety of symptoms. He experienced bloating, stomach pain, bowel movement blockage and anal bleeding. The initial conclusion of his doctor was that he had a strangulated intestine tied to a hernia he suffered years earlier. He prescribed a number of treatments, which did no good. Daniel went back to the doctor and went through blood tests and a CT scan. But it was a subsequent digital rectal exam that revealed a mass on his sphincter. That led to a biopsy and a diagnosis of squamos cell carcinoma of the anus, also known as anal cancer. The mass was on one side of Daniel's sphincter. Surgery removed the cancer but also removed half of his sphincter. Next up was chemotherapy, a type known as 5-fluorouracil, then radiation treatment and time in a hyperbaric chamber. The cancer was gone, the aforementioned fistula healed, but to dispose of the waste in his system, Daniel had to be fitted with an ostomy bag, which he eventually named Tommy. He went through three ostomy nurses and two types of bags before he felt comfortable managing the bag. These days, Daniel Garza says he is doing his best to make peace with Tommy. It hasn't stopped him from continuing his life as an advocate for those dealing with HIV and anal cancer. He also travels the world as an actor and a comic. Additional Resources: Support Groups: Man Up To Cancer: https://www.manuptocancer.org Cheeky Charity: https://www.cheekycharity.org
Former NFL star Rick Upchurch seemed to be in good health, but in 2010, he began to experience night sweats, fatigue and aches and pains. He saw his doctor, who ordered blood work. The test results revealed his white blood cell count was very high, and his general practitioner gave him the address of another doctor to see. Rick and his wife were shocked to learn the doctor they had been told to see was an oncologist. That doctor called for a bone marrow biopsy, which confirmed Rick had chronic myelogenous leukemia, a rare form of blood cancer that is tied to a genetic mutation called Philadelphia chromosome. The onocologist prescribed a chemotherapy regimen for Rick, but to some degree he was relieved to learn that it would be a regimen of oral chemotherapy. The medication was known as tasigna, which also goes by the name of nilotinib. Rick had to take these pills three times a day, which he still has to do, and will have to do for the rest of his life. Rick Upchurch's chemotherapy regimen led to survivorship, but again, he has to take the tasigna three times a day, something he will need to do for the rest of his life. He has his good days and bad days. On the bad days, he still experiences the fatigue, night sweats, achy muscles and joints; and he sometimes has diarrhea, as his body has a tough time processing the tasigna. However, he is grateful to be alive and grateful for the good days, in which he can lift weights, get on the elliptical and go for walks. Rick and his wife, Donna, also engage in a number of activities that support children with cancer.