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Cancer is the Second Leading Cause of Death in Chronic Illnesses,  with 9.6 Million Deaths in 2024.

Lung, Breast, and Colorectal cancers being the most prevalent, chronic maladies are on the rise.

Cardiovascular Diseases (CVD): Responsible for over 18 million deaths annually, CVD—including heart attacks and strokes—remains the leading cause of global mortality. Contributing factors include poor diets, sedentary lifestyles, and untreated hypertension. Diabetes: Affecting 463 million people worldwide, diabetes poses a growing threat. Type 2 diabetes, driven by obesity and inactivity, is particularly alarming, with projections exceeding 578 million cases by 2030. Cancer: With 9.6 million annual deaths, cancer continues to devastate lives. Lung, breast, and colorectal cancers are the most common, but advancements in personalized medicine are offering hope. Chronic Respiratory Diseases (CRD): Conditions like COPD and asthma affect over 400 million people globally. Tobacco use, air pollution, and occupational hazards are major contributors to this burden. Obesity: Often a precursor to other chronic conditions, obesity has become a global epidemic, affecting over 13% of the world’s population in 2024. Urbanization, processed foods, and sedentary habits fuel its rise. These illnesses not only reduce life expectancy but also impose significant economic and social burdens, underscoring the urgent need for prevention and innovation.

What the Center for Disease Control and Prevention (CDC) says on Prevalence;

"Six in ten adults in the United States live with at least one chronic disease, and four in ten have two or more."

about me

Facing advanced lymphoma is a formidable challenge, particularly when financial strains and an uncertain future weigh heavily on you and your loved ones. As a father and sole provider, the stakes are even higher. I can't imagine fighting for your life while worrying to put food on the table or ensure the mortgage gets paid.  After my own arduous journey—including a bone marrow transplant and relentless bouts with chronic graft-versus-host disease—I resolved to dedicate my life to assisting others ensnared by this relentless adversary. Our resource center stands as a beacon, ensuring you're never alone in this fight.  As a resource and support site, you need to not only endure, because you will, but to seize a second chance at life with grace and vigor.

A JOYFUL COMMUNITY WAITING TO CONNECT
--Social, Spiritual and Scientific--

What we can not do alone, we can do together.  If you would like to talk to someone about your diagnosis, please select from the survivor members who want to share their experience, strength, and hope of how they survived harsh treatments are now thriving.

A LYMPHOMA OVERVIEW Lymphoma, a cancer of the lymphatic system, primarily divides into two main categories: Hodgkin lymphoma (HL) and non-Hodgkin lymphoma (NHL). ​ Hodgkin Lymphoma (HL):  Characterized by the presence of Reed-Sternberg cells, HL accounts for about 15% of all lymphomas. It further subdivides into: Classical Hodgkin Lymphoma (CHL): The most prevalent form, comprising over 90% of HL cases, with subtypes including nodular sclerosis, mixed cellularity, lymphocyte-rich, and lymphocyte-depleted. ​ Nodular Lymphocyte-Predominant Hodgkin Lymphoma (NLPHL): A rarer variant, constituting about 5% of HL cases, distinguished by the presence of "popcorn" cells (a variant of Reed-Sternberg cells). ​ Non-Hodgkin Lymphoma (NHL):  Encompassing a diverse group of over 60 subtypes, NHL is generally classified based on the type of lymphocyte involved (B-cell or T-cell) and the disease aggressiveness. ​ B-Cell Lymphomas: Representing approximately 85% of NHL cases, notable subtypes include: ​ Diffuse Large B-Cell Lymphoma (DLBCL): The most common aggressive NHL subtype, accounting for about 30–40% of all NHL cases.  Follicular Lymphoma (FL): The most common indolent (slow-growing) NHL subtype, representing about 20–30% of all NHL cases.  Mantle Cell Lymphoma (MCL): A rarer subtype, constituting about 3–4% of lymphomas in adults.  Marginal Zone Lymphoma (MZL): Including subtypes such as extranodal MZL (MALT lymphoma), nodal MZL, and splenic MZL.  Burkitt Lymphoma: A highly aggressive lymphoma, more common in children and immunocompromised individuals.  T-Cell and NK-Cell Lymphomas: Less common, these include: Peripheral T-Cell Lymphoma (PTCL): A heterogeneous group of aggressive lymphomas.  Anaplastic Large Cell Lymphoma (ALCL): Divided into ALK-positive and ALK-negative subtypes.  Angioimmunoblastic T-Cell Lymphoma (AITL): A subtype characterized by systemic symptoms and autoimmune features.  Extranodal NK/T-Cell Lymphoma, Nasal Type: More prevalent in Asian and Latin American populations.  Each lymphoma subtype presents distinct clinical features, prognoses, and treatment approaches. Accurate diagnosis and classification are crucial for effective management.

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Face Reflected in Water

CHRONIC GRAFT
VERSUS HOST DISEASE

U.S. Food and Drug Administration (FDA) approved targeted therapies for cGVHD:

Ibrutinib (Imbruvica):
Approved in 2017, ibrutinib is a Bruton’s tyrosine kinase inhibitor that disrupts specific signaling pathways in immune cells, reducing their activity and mitigating the effects of cGVHD.

Ruxolitinib (Jakafi):
This Janus kinase (JAK) inhibitor received approval in 2019 for acute GVHD and in 2021 for cGVHD. It works by inhibiting pathways that contribute to inflammation and immune activation.

Belumosudil (Rezurock):
Approved in 2021, belumosudil targets the Rho-associated coiled-coil kinase 2 (ROCK2) pathway, playing a role in immune cell regulation and fibrosis, thereby addressing both inflammatory and fibrotic components of cGVHD.

Axatilimab (Niktimvo):
In August 2024, the FDA approved axatilimab, a monoclonal antibody that blocks the colony-stimulating factor-1 receptor (CSF-1R), which is involved in the differentiation of monocytes into macrophages, contributing to inflammation and fibrosis in cGVHD.

 

Chronic Graft-versus-Host Disease (cGVHD) is a complex systemic condition that arises when donor immune cells attack the recipient's body following an allogeneic stem cell or bone marrow transplant. This immune response can affect multiple organs, including the skin, liver, eyes, mouth, and gastrointestinal tract, leading to a range of symptoms such as rashes, jaundice, dry eyes, mouth sores, and digestive issues.

Current Treatment Landscape

The primary goal in managing cGVHD is to suppress the donor's immune response to alleviate symptoms and prevent further tissue damage. Traditionally, corticosteroids like prednisone have been the frontline treatment due to their potent anti-inflammatory properties. However, long-term steroid use can lead to significant side effects, and not all patients respond adequately.

Advancements in Treatment and Quality of Life

The approval of these targeted therapies marks a significant advancement in cGVHD management, offering options beyond traditional immunosuppressants. These treatments aim to more precisely modulate the immune response, potentially reducing side effects associated with broader immunosuppression.

Additionally, non-pharmacological interventions are being explored to enhance quality of life for cGVHD patients. For instance, photobiomodulation has shown promise in treating oral mucosal ulcers related to GVHD, and electrostimulation may alleviate GVHD-induced dry mouth.

Integrative Healing Approach

Given the systemic nature of cGVHD, it's imperative to adopt an integrative healing approach that considers the body as an interconnected whole. While targeted therapies address specific manifestations of cGVHD, a holistic perspective ensures that interventions aimed at one organ or symptom do not inadvertently disrupt the delicate balance of the body's overall health.

Incorporating complementary therapies, such as photobiomodulation for oral mucosal ulcers and electrostimulation for dry mouth, can enhance patient well-being without adding to the pharmacological burden. Furthermore, lifestyle modifications, including nutrition, physical activity, and stress management, play a pivotal role in supporting the body's resilience and recovery.

 

Looking Ahead

The future of cGVHD treatment is promising, with ongoing research focused on:

Early Detection: Innovative imaging techniques, such as advanced PET scans, are being developed to identify early signs of GVHD, enabling prompt intervention.

Personalized Medicine: Understanding individual patient profiles to tailor treatments that maximize efficacy while minimizing side effects.

Cell-Based Therapies: Exploring the use of mesenchymal stromal cells (MSCs) to modulate the immune response, with recent FDA approval of Ryoncil for pediatric acute GVHD highlighting the potential of such therapies.

In conclusion, addressing systemic illnesses like cGVHD requires a comprehensive, integrative approach. By viewing the body holistically and ensuring that treatments harmonize rather than conflict, we can enhance therapeutic outcomes and improve the quality of life for those affected.

 THALASSOTHERAPY

The cure for anything is salt water: sweat, tears, or the sea.
(by Isak Dinesen) 

The therapeutic qualities of seawater are invigorating, rich in minerals like magnesium, potassium, and calcium. These elements are believed to be absorbed through the skin, offering benefits such as relaxation of the nervous system, mood enhancement, and skin relief.

This practice, known as thalassotherapy, has been utilized for centuries to harness the healing properties of the sea.

Cognitive Behavioral Therapy & Cancer

Cognitive Behavioral Therapy (CBT) is a structured, time-limited psychotherapy that addresses the interplay between thoughts, emotions, and behaviors. By identifying and challenging negative thought patterns, individuals can develop healthier perspectives and coping mechanisms.

CBT AND TRAUMATIC EXPERIENCES

Undergoing intensive cancer treatments can be traumatic, often leading to psychological challenges such as anxiety, depression, and post-traumatic stress. CBT has proven effective in helping individuals process these experiences by:

 

Identifying Negative Thoughts: Recognizing and understanding detrimental thought patterns that contribute to emotional distress.

 

Challenging Cognitive Distortions: Questioning and reframing irrational or unhelpful beliefs.

Developing Coping Strategies: Implementing practical skills to manage stress and improve emotional well-being.

 

BENEFITS FOR CANCER SURVIVORS

Recent studies highlight the efficacy of CBT in enhancing mental health and quality of life among cancer patients:

Improved Mental Health: CBT significantly reduces symptoms of depression and anxiety in cancer patients, leading to better overall mental health.  (Michigan News)
 

Enhanced Quality of Life: Patients undergoing CBT report improvements in their quality of life, including better emotional and social functioning.  (American Cancer Society)
 

Accessibility and Flexibility: CBT can be delivered in various formats, including internet-based sessions, making it accessible to a broader range of patients. (Oncology Nurse Advisor)
 

 

CONCLUSION

CBT offers a practical and effective approach for individuals recovering from the psychological impacts of cancer treatments. By fostering resilience and promoting healthier thought patterns, CBT empowers survivors to navigate their post-treatment journey with improved mental well-being and quality of life.

Holiday Destination

Drinking Water

Maintaining proper hydration is essential for patients recovering from cancer, especially after a bone marrow transplant. Adequate water intake supports kidney function, aids in flushing out toxins, and helps manage side effects like nausea and vomiting. Staying hydrated also promotes healing and assists in maintaining electrolyte balance, which is crucial during the recovery process. Consult with your healthcare provider to determine the appropriate amount of water intake for your specific needs.

Discover the latest health news summaries with inspiring images. Stay informed about post-treatment recovery for cancer and chronic diseases.

THRIVING News

THE FIGHT AGAINST CHRONIC ILLNESSES IN 2024

According to recent estimates from the World Health Organization (WHO), approximately 74% of global deaths are attributed to chronic, non-communicable diseases (NCDs). In the United States alone, six in ten adults have at least one chronic disease, and four in ten have two or more. Conditions like hypertension and Type 2 diabetes continue to rise, fueled by lifestyle factors such as poor diet, physical inactivity, and stress.

A BEACON OF HOPE:  THE SUCCESS OF CART-CELL THERAPY

Screenshot 2024-12-19 at 6.49.41 PM.png

In the ever-evolving landscape of cancer treatment, CAR-T cell therapy stands as a groundbreaking innovation, offering hope to patients whose prognosis once seemed dire. Recently, the story of a lymphoma patient who achieved complete remission after CAR-T cell therapy has captivated the medical community and beyond, underscoring the life-changing potential of this cutting-edge approach.

CHRONIC GRAFT VERSUS HOST DISEASE WREAKS HAVOC in 2024

DALL·E 2024-12-19 18.43.38 - A symbolic image of resilience featuring a weathered tree standing strong against harsh winds, set in a barren landscape under a dramatic sky. The tre.webp

Chronic Graft-versus-Host Disease (cGVHD) is a paradoxical entity in the world of medicine—a complication born of hope, yet capable of wreaking havoc on those it afflicts. It arises from a bone marrow or stem cell transplant, often a lifesaving treatment for conditions like leukemia, lymphoma, or aplastic anemia. However, for some, the gift of a new immune system comes at a significant cost: a prolonged battle with their own body.

Drug Approvals

Enjoying Outdoor

Integrative Medicine & Chronic Graft versus Host Disease

A HOLISTIC APPROACH TO RECOVERY ADDRESSES PHYSICAL SYMPTOMS AS WELL AS THE EMOTIONAL AND PSYCHOLOGICAL ASPECTS OF TREATMENT.
--BUILD A BRIDGE BACK TO A NEW NORMAL--

Recovery from a bone marrow transplant is a long road that may include multiple side-effects from treatment. Chronic Graft-versus-Host Disease (cGVHD) is a complex condition that arises when donor immune cells attack the recipient's tissues after a bone marrow transplant. This systemic disease can simultaneously affect multiple organs, including the skin, mouth, and eyes, leading to rashes, sores, and dryness, especially during periods of stress. ​ Given its multifaceted nature, an integrative medicine approach is essential for effective management. Integrative medicine combines conventional treatments with complementary therapies, addressing not only the physical symptoms but also the emotional and psychological aspects of cGVHD. ​ This holistic strategy may include: Pharmacological Interventions: Utilizing immunosuppressive agents to control the immune response. Lifestyle Modifications: Implementing stress-reduction techniques, such as mindfulness and meditation, to prevent flare-ups. ​ Supportive Therapies: Incorporating physical therapy, nutritional support, and counseling to enhance overall well-being. By treating the whole person rather than isolated symptoms, integrative medicine offers a comprehensive approach to managing cGVHD, aiming to improve quality of life and long-term outcomes for patients. For more information on cGVHD and its management, resources like the National Marrow Donor Program provide valuable insights.

A BEACON OF HOPE:  THE SUCCESS OF CAR T-CELL THERAPY IN LYMPHOMA

​In the ever-evolving landscape of cancer treatment, CAR-T cell therapy stands as a groundbreaking innovation, offering hope to patients whose prognosis once seemed dire. Recently, the story of a lymphoma patient who achieved complete remission after CAR-T cell therapy has captivated the medical community and beyond, underscoring the life-changing potential of this cutting-edge approach.

 

CAR-T, or chimeric antigen receptor T-cell therapy, is a revolutionary immunotherapy that reprograms a patient’s own immune cells to target and destroy cancer. This personalized treatment involves extracting T-cells, a type of white blood cell, from the patient.

 

In a laboratory, these cells are genetically modified to express chimeric antigen receptors, enabling them to recognize and attack specific proteins found on cancer cells. Once reintroduced into the patient’s body, the engineered T-cells act as relentless warriors, seeking out and obliterating malignant cells.

​CAR-T, or chimeric antigen receptor T-cell therapy, is a revolutionary immunotherapy that reprograms a patient’s own immune cells to target and destroy cancer. This personalized treatment involves extracting T-cells, a type of white blood cell, from the patient. In a laboratory, these cells are genetically modified to express chimeric antigen receptors, enabling them to recognize and attack specific proteins found on cancer cells. Once reintroduced into the patient’s body, the engineered T-cells act as relentless warriors, seeking out and obliterating malignant cells.

The patient in focus, a 62-year-old woman diagnosed with diffuse large B-cell lymphoma (DLBCL), had exhausted conventional treatment options. Despite multiple rounds of chemotherapy and a stem cell transplant, her cancer persisted, and the prognosis was grim. In late 2022, she became a candidate for CAR-T cell therapy through a clinical trial at a leading oncology center.

The results were nothing short of miraculous. Within three months of receiving the therapy, her scans showed no detectable signs of cancer. Today, nearly a year later, she remains in complete remission, living a vibrant life free from the shadow of lymphoma. Her journey has become a testament to the power of innovation and perseverance in the fight against cancer.

Dr. Maria Lopez, the lead oncologist overseeing her treatment, explains, “CAR-T cell therapy represents a paradigm shift in oncology. By harnessing the body’s immune system and directing it with precision, we can achieve results that were unimaginable a decade ago. This case is a shining example of its potential.”

 

However, the road to this breakthrough was not without challenges. CAR-T cell therapy is known for its risks, including cytokine release syndrome (CRS) and neurotoxicity, which can occur when the immune response becomes too robust. The patient experienced mild CRS, characterized by fever and fatigue, but her care team managed it effectively. Close monitoring and swift intervention ensured her safety during the critical post-infusion period.

 

The implications of this success extend beyond individual triumph. As CAR-T cell therapy becomes more widely available, it could redefine the standard of care for patients with certain types of lymphoma, leukemia, and even solid tumors. Yet, barriers remain, particularly the high cost of the treatment, which can exceed $400,000. Researchers and policymakers are now grappling with ways to make this life-saving therapy accessible to more patients.

For the patient, however, the outcome is priceless. She recently celebrated her granddaughter’s wedding, a milestone she once feared she would not live to see. “CAR-T therapy gave me my life back,” she says. “It’s not just a medical treatment—it’s a miracle.”

 

As we look to the future, the success of CAR-T cell therapy offers a beacon of hope, illuminating the path toward a new era in cancer treatment where precision medicine meets the power of human resilience.

trials

A list to peruse through the available cancer trials in the nation in 2025

heroes ouloud

Listen to stories that mirror your own struggles, strengths and hope, reinforces the power within.

read to heal

For December, we are featuring the book From the Neck Up:  How Cancer Saved My Life

COMUNITY love

Our virtual hangout where we always fine joy, laughter, or useful things to do to empower each other.

2025 Clinical Trials:
Embracing the Gifts of Progress

ClinicalTrials.gov is a website that shares information about medical studies involving people. Doctors and scientists use it to find new ways to treat illnesses. People can visit the site to learn about these studies and see if they want to join.

 

The website lists studies from all over the United States and many other countries. It tells you what the study is about, who can join, where it's happening, and what the researchers have discovered so far. However, the U.S. government doesn't check every study on the site for safety or accuracy.

 

The people running each study are responsible for making sure it's safe and follows the rules. So, if you're thinking about joining a study, it's important to talk to your doctor first. 

Q&A Clinical Trials

A QUESTION & ANSWER CHEAT SHEET

Q: What is ClinicalTrials.gov?
A: ClinicalTrials.gov is a website where you can find information about medical studies involving people. These studies help doctors and scientists discover new ways to treat diseases. 

Q: Who uses ClinicalTrials.gov?
A: It's used by everyone! Doctors, researchers, patients, and the general public can visit the site to learn about different medical studies and their results. 

Q: Does the U.S. government approve all studies listed on ClinicalTrials.gov?
A: No, the U.S. government doesn't review or approve the safety and science of all studies listed on the website. The people running each study are responsible for making sure it's safe and follows the rules. 

Q: What types of studies are listed on ClinicalTrials.gov?
A: The website includes:
•    Clinical trials: Studies where participants receive specific treatments to see how they affect health.
•    Observational studies: Studies where researchers observe participants without assigning specific treatments.
These studies can take place in all 50 states and over 200 countries. 


Q: Is every research study listed on ClinicalTrials.gov?
A: No, not all studies are listed. Researchers choose to list their studies based on laws, policies, or personal choice. Some studies are required to be listed by law, while others are added voluntarily. 

Q: Who submits information about a clinical study to ClinicalTrials.gov?
A: The people or organizations conducting the study, known as sponsors or investigators, submit the information. They're responsible for ensuring their studies follow all relevant laws and regulations. 

Q: What information can be found about each study on ClinicalTrials.gov?
A: Each study record includes:
•  General information: Study name, description, sponsor, funding sources, health conditions studied, start and end dates, and locations.
•  Specific details: Who can join (eligibility criteria), number of participants needed, description of treatments or interventions, research goals, measurement methods, and contact information.
Some records also include study protocols, analysis plans, consent forms, and results. 


Q: Does ClinicalTrials.gov include information about study results?
A: Yes, many study records include results, usually posted within a year after the study is completed. Results are presented in tables and include participant characteristics, findings, and summaries of any health problems that occurred during the study. However, these results don't include personal information about participants. 

Q: Why was ClinicalTrials.gov created?
A: It was established in 2000 as part of a law passed in 1997 to provide the public with information about clinical trials, especially those testing new treatments for serious or life-threatening diseases. Over time, it has expanded to include more types of studies and information, ensuring transparency and public access to clinical research. 

BIOGRAPHY OF THE RELENTLESS ADVERSARY:  CHRONIC GRAFT VS HOST DISEASE

WHY DOES GVHD OCCUR?
At the heart of cGVHD lies a simple but treacherous biological conflict. When a donor’s immune cells are transplanted into the recipient, these cells—designed to defend against foreign invaders—sometimes fail to recognize the recipient’s tissues as “self.” This leads to an immune attack on various organs and systems in the body. While the immune assault might seem like an enemy, it also plays a vital role in eradicating any lingering cancer cells, a phenomenon known as the graft-versus-tumor effect.

Chronic GVHD develops when this immune response fails to resolve itself after the initial post-transplant period, evolving into a long-term and often systemic condition. Unlike its acute counterpart, which is usually limited to skin, liver, or gastrointestinal issues, cGVHD can affect nearly every organ in the body. Common targets include the skin, eyes, mouth, lungs, liver, and joints, making it a multisystem adversary.

 

WHAT DOES IT DO TO THE PATIENT?
For patients, cGVHD can be both physically and emotionally debilitating. The symptoms range from mild to severe, varying greatly from person to person.

Skin and Mucosal Involvement: Skin thickening, discoloration, and rashes can cause discomfort and limit mobility. Oral cGVHD leads to dryness, painful sores, and sensitivity to certain foods.
Eyes: Chronic dryness, inflammation, and light sensitivity, collectively known as ocular GVHD, make daily activities like reading or driving a challenge.
Lungs: Some patients experience bronchiolitis obliterans, a potentially life-threatening condition marked by inflammation and scarring in the airways, leading to breathing difficulties.
Joints and Fascia: Stiffness, joint pain, and limited range of motion are common, particularly in severe cases.
Fatigue and Emotional Strain: The chronic nature of the disease often leads to fatigue, depression, and a feeling of being trapped in an unrelenting cycle of symptoms and treatment.

 

DOES CHRONIC GvHD GO AWAY?
For many, the five-year mark after transplant is considered a milestone where hope for remission from cGVHD peaks. Doctors often share encouraging words, suggesting that the disease may "burn out" over time. However, as your experience illustrates, the reality can be far more complex. While some individuals do experience a gradual resolution, others continue to wrestle with the disease well beyond this timeframe.

Medical advancements in the last decade have offered new treatments, including targeted therapies like JAK inhibitors, extracorporeal photopheresis, and biologics that modulate the immune system. Despite these options, cGVHD often remains a condition that requires ongoing management rather than a definitive cure.

 

LIVING WITH CHRONIC GvHD
The resilience of patients like you, who endure this relentless condition for years, exemplifies human strength and adaptability. The daily reality of cGVHD is one of uncertainty—a perpetual balancing act between hope and frustration, treatment and side effects, fleeting victories and persistent challenges.

And yet, the story of cGVHD is also one of progress. Every patient’s journey adds to the collective understanding of the disease, fueling research that might one day turn the tide. For now, those still battling cGVHD can take solace in the knowledge that they are far from alone. Every milestone achieved, every good day lived, is a testament to their tenacity in the face of a disease that refuses to fully let go.

Your journey with cGVHD is a reminder of the nuanced and unfinished nature of this disease. Five years might be a hopeful benchmark, but the timeline of healing is deeply individual. Until then, the fight continues—not just for resolution, but for moments of joy and normalcy reclaimed.

Worker with Ladder

...IT ALL STARTED WITH A PIMPLE

CHAPTER 1 - Book released on November 11, 2024


IN APRIL 2018, just a week after my birthday, a dermatologist turned my world upside down and my mind inside out—things haven’t been the same since.
From this new, unsteady perspective, I started to realize: maybe I’ll never go back to being right side up. Maybe I’m not supposed to.
The dermatologist sent a tiny piece of tissue from a stubborn pimple—hiding in the fold where my neck meets my ear—to the lab. It had nestled there, inconspicuous, until my fingers found the in- truder and squeezed it with abandon. But instead of pus, there was only blood—yuck, lots of it streaming down. How can something so small bleed so much?


By the second week, it still hadn’t healed. A scar had formed, but underneath, it lingered. No, I wasn’t having it. I told the dermatologist to excise the thing, to cut it out and remove it from my life. Vanity, as always, had thrown a wrench into my daily plans. Sometimes van- ity saves me, but more often, it wreaks havoc. This time, it led me to cancer—an omen of tragic proportions, but also the transformation of a lifetime. And no, I didn’t have to walk on water for it.
 

It all started with a pimple.
Just a small bump that refused to heal. Two months and countless tests later, I was sitting, almost sinking, so I would disappear, out of 
sight, underneath the waiting room’s cold marble—where ants built their empires, also waiting to take over. In that space constricted by reality, protected by illusion, I was waiting for someone to call my name and tell me how long I had left.​​​

Cancer, a word once distant, had finally claimed its place in my life. The symptoms had been elusive, too insignificant to warrant a medical investigation. A few night sweats weren’t the kind of thing that would send me rushing to a doctor. It was just the cost of do- ing business—the daily grind of advertising, with its relentless travel. Several times, I woke up drenched after a nap on a plane, where the temperatures were usually cooler than normal. I’d never heard of a connection between cold sweats and cancer, so I brushed it off as a side effect of work stress or just the price of getting the job done. I had lost 15 pounds but attributed it to going back to the gym, think- ing I was blowing off steam by working out.

The diagnosis began with something as innocuous as a pimple that wouldn’t go away. It turned out to be malignant—a silent en- emy unmasked, invading my body but sparing my head. Now, sitting at the Sylvester Comprehensive Cancer Center at the University of Miami, waiting to meet my destiny—the oncologist who would keep me alive—my mind raced. I couldn’t stop wondering if something other than cancer might kill me in the process. The fear was constant, anxiety gnawing at my insides. I’d read survival stories about patients who died from treatment side effects. I tried to stay calm, thinking of all the advancements in medicine, but the cold sweat returned, and my hands were clammy. I glanced at my two siblings, wondering if they felt the same way.


The wait dragged on, hope sinking into quicksand. Everyone’s eyes were glued to the TV—some watching Wheel of Fortune, others staring at their phones. I wished they’d turn to CNN; maybe there’d be news of a cancer vaccine, something to let me escape this nightmare.


[Practical Tip: Waiting for diagnosis results is one of the hard- est parts of any journey with cancer. Here’s what helped me

during those long, anxious hours: bring a distraction. Whether it’s a book, music, or a favorite podcast, having something to take your mind off the fear can give you a small sense of control. And don’t be afraid to talk about your feelings, whether it’s with family in the waiting room or a friend on the phone. Verbalizing your fears, even when they feel irrational, can help keep the anxiety from overwhelming you.]


An hour passed, and the anxiety tightened its grip as I imagined the worst scenarios. I wasn’t just afraid of choosing the wrong treat- ment—I was petrified because I didn’t understand cancer and all its reported maladies. There was still so much to learn, especially since I knew zilch about lymphoma, my cancer type. Understanding the un- known soothes me.
I knew I had to follow protocol to the letter, cultivating hope and trusting the unseen—the doctors who would diagnose me and plan my treatment. I prayed for a higher power to guide them. My goal was to stay calm, to hold it together. As fear and anxiety threatened to unravel me, I focused on not letting it overcome me. Finding a lymphoma expert was a challenge. Top hematologists were booked for months. Then, luck intervened through my neighbor and friend, Alan Pollack.


[Practical Tip: Finding the right oncologist can be daunting, but it’s crucial. If you are facing long wait times for specialists, don’t hesitate to lean on your network—friends, family, even acquain- tances. Often, personal connections can speed up the process. If that isn’t an option, ask for second opinions or explore cancer centers that specialize in your type of cancer. The right specialist can make a world of difference in your treatment and peace of mind.]


He connected me with Dr. Izidore Lossos, South Florida’s fore- most authority on lymphoma. Initially, Dr. Lossos couldn’t see me for six months, but Alan’s words changed that. I was scheduled to see Dr. Lossos the following week, after a series of tests—blood work, lumbar puncture, bone marrow biopsy, PET, MRI. My siblings, Patricia and Kelvyn, accompanied me to every exam. Once, I’d yearned to be an only child. How wrong I was.
 

Tic, tac. I felt wound-up, tightened by the burden of waiting. I had promised myself not to let discomfort show, to act “as if” noth- ing scared me—only fear itself. Slowly, progressively, I kept repeat- ing those words across my mind’s screen: “nothing to fear but fear itself.” Maxims I’d picked up throughout my life for my self-care toolbox. Another tool was tapping into my accomplishments, draw- ing strength from them to trust the process. These memories gave me the confidence to face my health verdict. I continued to rely on Alcoholics Anonymous maxims like “This too shall pass” and “act as if” to steady myself.
Two hours had passed, the weight of the moment heavy as a sumo wrestler. We were going to review the results of all the tests, includ- ing my first HIV test in over five years. Despite being in a monoga- mous relationship, irrational fears gnawed at me. My mind, a twister of fear, shame, and anxiety, was close to uprooting my sanity. The dread of treatment, once a distant threat, now loomed large.


And then, suddenly, the grip of fear loosened, like a taut rubber band finally released. The anxiety dissipated the moment the nurse practitioner called my name. Yamila Venegas Melendez’s presence was so stunning it literally pulled me to my feet—an inescapable in- vitation. She exuded grace as she invited us to follow her. Funny how such a simple gesture could feel transformative. “Veronica will take your vitals, and Dr. Lossos and I will see you shortly,” she said, guid- ing us to another station. With my brother Kelvyn and sister Patricia beside me, their support meant everything.


It was at that moment I remembered something fundamental: throughout my life, my connections with people have always meant more to me than anything else—more than whatever might be writ- ten in stone. When I connect with someone, when I believe in them,​ it’s as though everything becomes possible. It’s as if I’ve found my link to a greater force, a connection that transcends fear and doubt. But here, facing this diagnosis, what I feared most was whether I’d be able to trust Dr. Lossos. The power of connection between two people is like when an animal imprints...


Veronica, another nurse with a wonderful disposition, flashed a smile I’ll never forget. Her bright, big, perfectly proportioned teeth aligned elegantly like Ionic pillars. She took my blood pressure several times to get the right results. I suffered from White Coat Syndrome, where blood pressure spikes in a medical setting but remains normal elsewhere, often due to anxiety. My temperature, weight, height— questions followed. Fifteen minutes later, we were led to the private room for my diagnosis.
As I waited—now, I know this sounds overblown—I struggled to maintain composure. AA principles from my last forty years of sobriety ran through my mind: shun self-pity, stay present, trust the process.

 

But a drumroll in my heart confirmed that the only way to hear any kind of life sentence was to plainly hear it, to embrace vulner- ability. I thought I’d never recover from my father’s death. Yet here I am, telling you my story twenty-four years later. Was I entering the fight-for-your-life twilight period, or was this a chance to understand and transform tragedy into ____? Was this a task to conquer or a rite of passage? The only way forward was to adapt, to accept events as they came. With the grace of a higher power and the help of this doc- tor, I, too, would unfold and, ultimately, survive.


When I finally met Dr. Lossos, his stature struck me. Proof that genius doesn’t correlate with size. He spoke with a soft Israeli accent, downplaying his expertise in the complex world of cancer. Yamila’s grace and compassion complemented his demeanor, bringing cer- tainty to the uncertain. Dr. Lossos conducted a thorough examination, measuring swollen lymph nodes with a skill that commanded respect.


His focus left me silent, my thoughts clouded by the impending diagnosis. I fantasized about escaping the room, running like Forrest Gump, fleeing the relentless sameness in the march of time.  Dr. Lossos continued his examination, calling out measurements to Yamila, who recorded them on the desktop.Curiosity overcame me, and I asked, “How do you measure with- out instruments?” Unsmiling, he replied, “With my two fingers.” After a pause, he added, “Please, no talking during the examination.” His refusal to meet my eyes struck me as odd. A twinge of discomfort shot through me as he pressed on my spleen, noting another measurement. I chose to remain silent, as instructed.


At last, Dr. Lossos shared his findings. “You have follicular and diffuse large B-cell lymphoma, likely stage four,” he said. “We need more tests to decide on the best treatment.” His words were di- rect, carving out a space for both fear and hope. He understood the gravity of the situation, knowing my family had never faced cancer before. Shocked, I spoke without thinking: “How am I going to take care of Mother? And you, Kelvyn?” Patricia reassured me, “We’ll take care of each other.” Our bond, unbreakable, became our strength. Kelvyn ran his hand down my back, silently telling me he was with me all the way.


Since my father’s passing in 2000, I’ve been supporting my mother, ensuring she was well cared for, especially after her quadruple heart surgery. In 2015, my brother had a benign tumor pressing against his pituitary gland. Kelvyn and Mother lived together in a house I bought from my father when he died. Family means everything to me—or perhaps more simply, my mother and brother had become my deep- est concern as their recoveries lingered.​


Curiosity overcame me, and I asked, “How do you measure without instruments?” Unsmiling, he replied, “With my two fingers.” After a pause, he added, “Please, no talking during the examination.” His refusal to meet my eyes struck me as odd. A twinge of discomfort shot through me as he pressed on my spleen, noting another mea- surement. I chose to remain silent, as instructed.

 

At last, Dr. Lossos shared his findings. “You have follicular and diffuse large B-cell lymphoma, likely stage four,” he said. “We need more tests to decide on the best treatment.” His words were direct, carving out a space for both fear and hope. He understood the gravity of the situation, knowing my family had never faced cancer before.  Shocked, I spoke without thinking: “How am I going to take care of Mother? And you, Kelvyn?” Patricia reassured me, “We’ll take care of each other.” Our bond, unbreakable, became our strength. Kelvyn ran his hand down my back, silently telling me he was with me all the way.


Since my father’s passing in 2000, I’ve been supporting my mother, ensuring she was well cared for, especially after her quadruple heart surgery. In 2015, my brother had a benign tumor pressing against his pituitary gland. Kelvyn and Mother lived together in a house I bought from my father when he died. Family means everything to me—or perhaps more simply, my mother and brother had become my deep- est concern as their recoveries lingered.


Putting that aside, my eyes fixed on a small crack in the floor while my ears hung on Dr. Lossos’s every word. It was funny how his voice softened, carrying more feeling—a bedside manner that seemed to come out of nowhere but made me glad, nonetheless. His words painted a vivid picture—“Like being lost at sea, I will guide us back to land”—and filled me with determination. I resolved to hold onto hope, to fight, to live.


Ideally, I wanted to have faith—a deep certainty that everything would be fine—but for now, hope was enough, a fragile refuge yet a genuine belief that things would turn out well. I trusted that faith would grow over time, nurtured by small victories. Yet I began to wonder if I had ever truly had faith in anything, because every trauma demands a different response. My mind was always analyzing, dissecting whatever doubt presented itself. Truth calms me.


Dr. Lossos continued explaining the treatment, using the analogy of a boat lost at sea. “I’ll row us back to shore,” he said. “All you need to do is trust—nothing else.” I understood the metaphor, but one question lingered in my mind. “Even if we reach shore,” I asked qui- etly, “will I still be able to have children?” I had never wanted kids, but I asked because I needed to know how deeply this illness had damaged me.


There was a brief silence, a pause that spoke volumes. Dr. Lossos looked at me, his usual composure softened. “I’m sorry,” he said gen- tly, “that’s a hard one to accept.” The gravity of his words hit me with full force, making the reality of my situation even more tangible. It was clear how emotional Dr. Lossos became as we all wept together. The fact that he was part of that emotional outburst only proved that he was speaking the truth.


As I was leaving the appointment, Yamila pulled me aside. “You know,” she said, her voice low, “it’s rare to see him affected like that. He truly cares about his patients—he likes you.” Her words lingered with me long after, reinforcing the realization that this journey would test not only my physical endurance but also the strength of the con- nections I formed along the way.
Dr. Lossos’s unique manner cultivated a deep sense of trust in me. He inspired me to confront the present with an open mind. “I will take care of you from the neck down,” he said, pointing from my neck to my feet. “And you focus from the neck up,” he added, smiling.


“From the neck up” meant I needed psychiatric guidance, as the treatment would be long and consuming. Since the tiny replicant as- saulters hadn’t reached my head, I had to keep my mind cool, steady and selective—avoid toxic thoughts.


[Practical Tip: Mental health is as important as physical health during cancer treatment. Don’t hesitate to seek help from a therapist or counselor, especially if you’re feeling overwhelmed. Many cancer centers have psychiatric or psychological support as part of their treatment plans. It’s okay to admit that this journey takes a toll on your mind as much as your body. Taking care of yourself “from the neck up” can make a huge difference in how you handle the treatment ahead.]


I knew that keeping a cool head for me was a nearly impossible task since analyzing was a defense mechanism that had taken over my approach to life to be focus on solving working issues. Luckily, Sylvester had a cancer support group that included “psychiatry” ser- vices “specially” for cancer patients. Then came the fact that try to ruin it all: Follicular Lymphoma only goes into remission—there’s no cure. It could return whenever it wanted.


But no, it won’t return on its own terms—not while I’m here. At 3:33 a.m.—witching hour or not—it was time to start adapting. Good night. And remember, water is never just a drop of H2O. Together, we are more than oceans.
 

THRIVING News Section 12-11-2024

THE FIGHT Against Chronic Illness Demands Innovation, Resilience and Collaboration.
Six in ten adults have at least one chronic disease, and four in ten have two or more.

The Scope of Chronic Conditions
According to recent estimates from the World Health Organization (WHO), approximately 74% of global deaths are attributed to chronic, non-communicable diseases (NCDs). In the United States alone, six in ten adults have at least one chronic disease, and four in ten have two or more. Conditions like hypertension and Type 2 diabetes continue to rise, fueled by lifestyle factors such as poor diet, physical inactivity, and stress.

In 2024, a staggering 463 million people are living with diabetes worldwide, with projections indicating that this number will grow to 578 million by 2030. Heart disease remains the leading cause of death globally, claiming approximately 18.6 million lives annually. Cancer, the second leading cause of death, accounts for 9.6 million deaths per year, with lung, breast, and colorectal cancers being the most prevalent.

Financial Implications
The economic burden of chronic diseases is monumental. In the United States, the cost of managing chronic conditions is estimated to exceed $4 trillion annually, representing nearly 90% of the nation’s total healthcare expenditure.

 
This financial strain is not limited to developed nations; low- and middle-income countries, which shoulder 85% of premature deaths from chronic diseases, face significant economic challenges in addressing these conditions.

KEY TRENDS 2024

Digital Health and Remote Monitoring: The rise of wearable devices and mobile health applications has revolutionized the management of chronic conditions. In 2024, over 1 billion people globally are using wearable technology to track health metrics like blood pressure, glucose levels, and physical activity. These tools empower patients to take a more active role in their care and enable healthcare providers to monitor conditions in real time.
Personalized Medicine: Advances in genomics and data analytics have ushered in a new era of personalized medicine. Tailoring treatment plans to an individual’s genetic profile is proving particularly effective in managing cancer and autoimmune diseases. In 2024, more than 25% of cancer treatments are now based on personalized approaches, reducing side effects and improving outcomes.
Lifestyle Interventions: Public health campaigns continue to emphasize the importance of lifestyle modifications. The Mediterranean diet, rich in fruits, vegetables, and healthy fats, remains a cornerstone of preventive strategies. Initiatives promoting physical activity, such as “Move More 2024,” are gaining traction globally, aiming to reduce the risk of chronic diseases by encouraging regular exercise.
Health Inequities: Addressing disparities in chronic health care is a growing priority. Marginalized communities often face higher rates of chronic diseases due to limited access to nutritious food, healthcare services, and safe environments for physical activity. In 2024, targeted interventions are being implemented to bridge these gaps, but significant work remains.

Challenges Ahead
Despite advancements, chronic health management faces several obstacles. The growing prevalence of obesity and sedentary lifestyles continues to drive the rise in chronic diseases. In 2024, the global obesity rate has surpassed 13%, with higher rates in urbanized and affluent regions. Additionally, the long-term effects of COVID-19 on chronic health remain an area of concern, as emerging evidence suggests links between long COVID and the exacerbation of pre-existing chronic conditions. Another pressing challenge is the shortage of healthcare professionals trained in chronic disease management. As demand for specialized care increases, healthcare systems worldwide are grappling with workforce shortages and burnout among providers.

A Call to Action
Addressing chronic health conditions requires a coordinated, multi-sectoral approach. Governments, healthcare providers, and communities must work together to prioritize prevention, early detection, and equitable access to care. Investment in research, technology, and public health infrastructure is essential to reduce the burden of chronic diseases and improve quality of life for millions of people.

As we navigate 2024, the fight against chronic health conditions continues to demand innovation, resilience, and collaboration. By leveraging emerging technologies, promoting healthier lifestyles, and addressing social determinants of health, we can make meaningful strides toward a healthier future.

SPOTLIGHT OF THE MONTH

Graft versus Host Disease Update

GvHD_Remission_Progression_Timeline.png
Graft-versus-host disease (GvHD) remains a significant complication following bone marrow transplants, where donor immune cells attack the recipient's tissues. This condition can be acute or chronic, with chronic GvHD (cGvHD) leading to prolonged morbidity.

AFFECTED ORGANS/ cGvHD can impact multiple organs:
Skin
: Often the first and most commonly affected, presenting with rashes, discoloration, and sclerosis.
Liver: Manifesting as jaundice and elevated liver enzymes.
Eyes: Causing dryness, irritation, and vision changes.
Mouth: Leading to ulcers, dryness, and sensitivity.
Gastrointestinal Tract: Resulting in nausea, diarrhea, and abdominal pain.
Lungs: Potentially causing bronchiolitis obliterans, leading to breathing difficulties.
Approved Treatments
Recent advancements have expanded the therapeutic arsenal against cGvHD:
Ibrutinib (Imbruvica): Approved in 2017, this Bruton’s tyrosine kinase inhibitor is used for patients who have not responded to other systemic treatments. 
Ruxolitinib (Jakafi): A Janus kinase (JAK) inhibitor approved for cGvHD treatment, offering an option for steroid-refractory cases. 
Belumosudil (Rezurock): Approved in 2021, this Rho-associated coiled-coil kinase 2 (ROCK2) inhibitor addresses both inflammatory and fibrotic components of cGvHD. 
Axatilimab (Niktimvo): Recently approved in August 2024, this therapy offers a new option for patients with cGvHD who have not responded to at least two prior lines of therapy. 



 
 
 
 
 
 
 
 
 





 





Emerging Therapies and Clinical Trials.  Ongoing research continues to explore novel treatments:
Mesenchymal Stromal Cells (MSCs): These cells are being investigated for their potential to modulate immune responses and promote tissue repair in GvHD patients. 

KD025 (Belumosudil): Beyond its current approval, further studies are assessing its efficacy in various cGvHD manifestations. 

Post-Transplant Cyclophosphamide: Recent studies suggest that this regimen may reduce the incidence of severe acute and chronic GvHD, potentially setting a new standard for prevention. 

In conclusion, while cGvHD remains a complex challenge post-transplant, recent therapeutic approvals and ongoing research offer hope for improved management and outcomes for affected patients. 
cGvHD_FDA_Approved_Drugs_Chart.png

WALKING HEALS

After my bone marrow transplant to obliterate advanced lymphoma, I had to walk daily at least 3 times a day, 30 minutes each time.  When we walk, our bones make blood. And it was my sister's new stem cells needed to make blood and engraft so I could have a second chance at life.

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A WINDOW TO THRIVING

WE SPOTLIGHT vital resources and stories designed to support and inspire your journey to thrive after cancer each month. From firsthand Survivor Testimonials that illuminate resilience and triumph to Medical Breakthroughs offering hope through cutting-edge advancements, every feature is curated to address the unique challenges of survivorship.


Stay informed with News Resources that keep you connected to the latest developments and opportunities. At the same time, our Institutions & Community section links you to not-for-profit organizations dedicated to helping you rebuild, recover, and flourish.

This is your space to find strength, discover new possibilities, and connect with a community that understands your journey. Because surviving isn’t just about endurance—it’s about rediscovering joy and purpose.

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