The National Bone Marrow Transplant Link

11/07/2025

Need help learning how to navigate which Medicare supplement is best for you? Check out this video.
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11/06/2025

11/06/2025

🧠 Coping with the Battlefield of the Mind on a BMT Journey
1. Understanding the Mental Battlefield

A bone marrow transplant is as much a psychological and emotional challenge as it is a medical one. Survivors often describe it as a “battle of endurance—both in body and mind.”

Fear, isolation, and uncertainty are common, especially during long hospital stays or when post-transplant complications like GVHD arise.

According to the National Comprehensive Cancer Network (NCCN) Distress Management Guidelines, cancer patients should be routinely screened for emotional distress, as it can impact recovery, adherence to treatment, and overall quality of life.

The American Society for Transplantation and Cellular Therapy (ASTCT) emphasizes a mind-body approach—recognizing that mental health directly affects immune recovery and physical resilience.

“Your mind will try to convince you that you can’t.
Your spirit must whisper back: ‘I already am.’”

2. Common Mental Health Challenges After BMT
Emotional Challenge What It Feels Like Professional Insight
Anxiety Fear of relapse, infections, or symptoms returning Practice grounding techniques, mindfulness, or CBT-based coping to reduce rumination
Depression / Hopelessness Feeling like life is on hold or changed beyond recognition NCCN recommends early mental health referral and antidepressant therapy when appropriate
Identity Loss Feeling “different” from who you were before transplant Rebuilding identity is a gradual process; working with psycho-oncology or survivorship programs can help
Cognitive Fatigue (“Chemo Brain”) Difficulty focusing, remembering, or multitasking Use pacing, journaling, and cognitive exercises; occupational therapy can help retrain habits
3. Professional Coping Strategies

🩺 Evidence-Based Approaches:

Cognitive Behavioral Therapy (CBT): Helps challenge catastrophic thoughts (“What if it comes back?”) and replace them with balanced perspectives.

Mindfulness-Based Stress Reduction (MBSR): Studies show it can reduce anxiety, fatigue, and insomnia in post-transplant survivors.

Support Groups: The Be The Match Patient Support Center and Leukemia & Lymphoma Society (LLS) provide survivor and caregiver peer programs.

Physical Activity: Even light stretching or walking helps regulate mood and sleep, as supported by NCCN Survivorship Guidelines.

🧩 Practical Tips:

Set small, daily goals to restore a sense of purpose.

Journal about fears and progress—it helps “de-clutter” emotional overwhelm.

Allow yourself to grieve your old normal while still making room for new meaning.

4. Survivor Reflections

“During transplant, I fought the urge to quit every single day. But I realized I didn’t need to win every battle—just keep showing up.”
— BMT Survivor, Memorial Sloan Kettering

“I had to stop asking, ‘When will I be me again?’ and start saying, ‘This version of me is still worthy, still fighting.’”
— GVHD Survivor, Johns Hopkins

“The hardest part wasn’t the pain. It was silencing the fear that this would be my whole story. Turns out, it was just the hardest chapter.”
— Allogeneic Transplant Survivor, Stanford

5. Spiritual & Meaning-Based Coping

For many, faith, nature, or a sense of purpose becomes a stabilizing force.

Research on meaning-centered therapy (Memorial Sloan Kettering) shows improved emotional well-being when patients reconnect with values, relationships, and legacy.

Even small rituals—lighting a candle, prayer, listening to music—can help anchor the mind in hope.

“Healing doesn’t mean the damage never existed. It means it no longer controls your life.”

6. When to Seek Professional Help

Seek help if you experience:

Persistent sadness or anxiety lasting more than two weeks

Thoughts of self-harm or wishing you wouldn’t wake up

Inability to sleep, eat, or enjoy activities you once liked

Emotional withdrawal or hopelessness

Psychologists, social workers, and oncology therapists are trained to support these challenges. Many major transplant centers (like MSK, Mayo Clinic, and Dana-Farber) have psycho-oncology programs.

7. Closing Reflections: The Mind as a Healing Partner

Your mind is not your enemy—it’s a powerful ally learning how to survive what your body has endured.
Healing after BMT is a process of reclaiming mental strength one thought, one breath, one small victory at a time.

“The mind is a battlefield, yes. But it’s also the birthplace of resilience.”

11/02/2025

Did you miss our latest webinar on GVHD? You can check it out here.

Corey Cutler, MD, MPH of the Dana Farber Cancer Institute is a hematologist and blood and marrow transplant physician who treats patients with leukemia, lymphoma and other blood and bone marrow diseases. Dr. Cutler will share the many progressive, innovative and noteworthy updates regarding chronic....

10/30/2025

Linda Lane was still fatigued months after having COVID-19 in January 2021. "I told my doctor that I had not been this tired since I had a newborn in the house," says Lane. "That got her attention."
Her bloodwork showed abnormal results, and by May, the diagnosis was multiple myeloma. Lane was familiar with the disease—her father-in-law had it in the 1990s and passed away in 2002. She and her husband Ted were devastated, thinking she might experience something similar.
She came to Dana-Farber to meet with myeloma expert Omar Nadeem, MD. Nadeem listened to their fears and explained that treatment is very different now.
After going through standard treatment for the disease and experiencing a relapse, Lane opted to have CAR T-cell therapy in May. CAR T-cell therapy is an immunotherapy that engineers a patient’s own immune system to fight against the cancer. In the past, patients needed to be closely monitored in the hospital so that potentially dangerous side effects of the therapy could be managed immediately. Some patients can now receive CAR T-cell therapy in the outpatient clinic with no or a limited hospital stay. The administration of CAR T-cell therapy has become masterfully choreographed at Dana-Farber.
For Lane, the experience left an impression. "It was clear that everyone on the team – the schedulers, the lab techs, the nurses, the PAs and physicians were all working together," she says. "All we needed to do was show up."
When Lane's cells were ready for infusion, her social worker asked her if she wanted the Dana-Farber chaplain bless them. As a person of faith, she jumped at the chance. "This team delivered such comprehensive care – physical, mental, and spiritual." she says.
Today, Lane is in complete remission, with no sign of disease. She will take a supportive therapy for a few more months, but after that, she will not require medication if she stays in remission.
Lane and her husband are planning a trip soon to celebrate, but mostly she’s adjusting to the idea of getting back to normal. Just a few months ago, that seemed unattainable. "I truly cannot express my appreciation enough," she says. "Dana-Faber has left us hopeful and grateful."
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10/29/2025

Did you know there is an alliance of leading cancer centers that develop evidence based practice guidelines for cancer treatment? This alliance guides decision making for all things cancer related to make recommendations that are evidence base for the best cancer outcomes. Over 190 countries use their recommendations. This alliance is referred to at the NCCN. It is the National Comprehensive Cancer Network. Below is a summary of their recommendations for treating GVHD of the GI tract.

Here is a professional-level summary of what the National Comprehensive Cancer Network (NCCN) guidelines say about managing gastrointestinal (gut) involvement of graft‑versus‑host disease (GVHD) — note: this is intended for informational use only and not a substitute for personalized medical advice from a transplant physician, gastroenterologist or hematologist.

✅ What the guidelines cover

The NCCN “Hematopoietic Cell Transplantation (HCT)” guidelines discuss diagnosis, staging and management of acute and chronic GVHD, including gut/GI-tract involvement.
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For gut GVHD, the guidelines emphasize:

Accurate staging/grading of GI involvement (e.g., volume of diarrhea, need for parenteral nutrition, presence of nausea/vomiting, mucosal damage)
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Prompt recognition, often via endoscopy/biopsy when unexplained GI symptoms occur post transplant (especially in allogeneic HCT)
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Early initiation of therapy in moderate-to-severe involvement rather than “wait and watch.”

🩺 Key management recommendations for gut GVHD

Below are major points for gut GVHD (both upper and lower GI), drawn from (or consistent with) NCCN guidance and related literature:

Initial systemic therapy

For acute GVHD involving the gut (especially grade II-IV), first-line therapy is systemic corticosteroids (for example: methylprednisolone 1-2 mg/kg/day) plus optimization of immunosuppression (such as ensuring therapeutic levels of calcineurin inhibitors if used) as per NCCN guidance.
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If only upper GI symptoms (nausea/vomiting/anorexia) and no significant lower GI diarrhea/volume loss, lower steroid doses (for example ~0.5-1 mg/kg/day) may be considered along with topical GI steroids.
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For lower GI (large-volume diarrhea, malabsorption, protein-losing enteropathy) the higher end of steroid dosing is recommended; supportive care (fluid/ electrolyte/ nutrition) is critical.
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Supportive care measures

Manage fluid and electrolyte losses, monitor intake/output (especially with diarrhea).
NCCN Continuing Education
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Nutritional assessment: consider parenteral nutrition in patients with significant malabsorption, high stool output, inability to maintain oral intake.
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GI consultation for complications (e.g., strictures, malabsorption) in chronic GVHD of the GI tract.
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Manage infections (e.g., CMV, C. difficile) since GI symptoms in a transplant patient may mimic GVHD — key to rule out or treat concurrently.
ASH Publications

Refractory or steroid-resistant cases

In cases where patients do not respond to first-line steroids (or worsen) — defined as “steroid-refractory” — additional (“second-line” or beyond) therapies should be considered sooner rather than later.
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The NCCN updates note that targeted therapies (e.g., JAK inhibitors) are increasingly part of the armamentarium.
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Chronic GI GVHD management

For chronic involvement (persistent diarrhea, malabsorption, strictures, prolonged GI symptoms) GI specialist evaluation is recommended (for example for esophageal strictures, pancreatic enzyme deficiency from pancreatic atrophy).
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Monitor for long-term sequelae of gut GVHD (e.g., nutritional deficiencies, weight loss, osteoporosis from malabsorption) and integrate multidisciplinary care.

⚠️ Things to discuss with your care team

What grade/stage is the gut GVHD? Knowing whether the GI involvement is mild (upper GI only) vs. moderate/severe (large‐volume diarrhea, ileus, protein loss) helps tailor therapy.

Is the current immunosuppression optimized? Ensuring calcineurin inhibitor levels (if used) are within target is part of NCCN recommendations.

Is there an infection/infectious mimic? GI symptoms post transplant may stem from viruses, C. difficile, CMV — ruling these out (or treating them) is crucial.

Nutritional/functional status: If oral intake is poor, weight is dropping, stool output is high, ask about early nutritional intervention (enteral vs parenteral) and GI specialist involvement.

Monitoring response and timing for escalation: If no improvement within a defined timeframe (often ~3-5 days in severe cases) of first-line therapy, discussion of second-line therapy should occur.

Long-term GI follow-up: For chronic gut GVHD, issues such as strictures, malabsorption, fat/gut enzyme loss may require long-term monitoring.

10/28/2025

A Family’s Fight: Bone Marrow Transplant at Johns Hopkins Enables Life Beyond Sickle Cell Disease
09/11/2025

With her brother as her donor and family support, Tatyana Thompson overcame years of pain to reclaim hope and health
Tatyana support system
From left to right: husband Antonio Manns Jr.; patient Tatyana Thompson, resting in her hospital bed after receiving her bone marrow transplant; Tatyana’s mother, Tyrea Peoples; and her brother and donor, Dakota Thompson. Credit: Antonio Manns Jr.
With her brother as her donor and family support, Tatyana Thompson overcame years of pain to reclaim hope and health
“I always knew I had this condition that no one else around me had,” says Tatyana Thompson, who has sickle cell disease. “Growing up, I knew it was important to make sure my friends and people around me understood what to do if I had a pain crisis, when to call an ambulance. That was my life.”

Sickle cell disease (SCD) is a lifelong, inherited blood disorder that causes red blood cells to form a crescent shape instead of a round disc. These misshapen cells restrict blood flow, leading to severe pain and potential organ damage. The Centers for Disease Control and Prevention estimates that about 100,000 Americans and millions more worldwide live with SCD. Observed in September, Sickle Cell Awareness Month highlights the urgent need for better treatments and greater understanding of the disease.

Thompson, of Columbia, Maryland, was diagnosed with SCD at 2 months old. Raised by a single mother alongside her younger brother, she spent countless days and nights in hospitals. As she grew older, the fear of a pain crisis continued to overshadow daily life.

“Everything I did revolved around being close to hospitals,” says Thompson. “Sickle cell makes you second-guess every decision, even vacations. If I went on a cruise with my family, I knew I’d end up in the hospital the next day. My joy was stolen all the time.”

When Thompson became pregnant in 2022, she had to stop taking her medication used to control pain caused by SCD. Her pregnancy was marked by months of hospitalizations and pain crises. After her son was born, the pattern continued: extended hospital stays robbed her of precious moments.

“I missed my son’s first time crawling and other important milestones because I was in and out of the hospital,” says Thompson. “My family and I knew we had to try something new.”

The turning point came during another extended stay at The Johns Hopkins Hospital, when Thompson saw a news story about new research on SCD treatments. When she asked her doctor about new treatment options, Thompson learned about a “half-matched” bone marrow transplant.

As reported in the clinical trial, the breakthrough “half-matched” bone marrow transplant is built on more than 50 years of research at the Johns Hopkins Kimmel Cancer Center. Unlike traditional high-dose conditioning, which historically limited transplants to younger patients with minor organ damage, this approach uses a partially matched donor, such as a sibling, parent or cousin.

“Unlike fully matched transplants, which are often out of reach for adults with complications, this method is designed to meet the needs of a much broader sickle cell population,” says Robert Brodsky, M.D., director of the Division of Hematology at the Johns Hopkins University School of Medicine and the Johns Hopkins Family Professor of Medicine and Oncology. “With a half-matched donor, like in Tatyana’s case, we’ve seen curative results in about 90% of patients.”

In July 2024, Thompson underwent her transplant using stem cells from her younger brother, Dakota.

“He’s been there through everything,” says Thompson. “When I was a kid getting transfusions, he’d ask to skip school just to come with me. Being my donor was so real for Dakota. We’re best friends.”

On Aug. 29, 2024, she rang the bell at the Johns Hopkins Kimmel Cancer Center inpatient/outpatient clinic. A DNA test confirmed Thompson’s SCD was gone.

“It was like a weight lifted,” says Thompson. “For the first time in my life, I wasn’t stressed about this huge thing hanging over me. It was over.”

Life after transplant has been filled with firsts. Family trips no longer end in the hospital. After ringing the bell, Thompson went on vacation with her family and enjoyed every waterslide without fear of pain. Visiting Disney World with her son, a feat once unthinkable due to the physical strain on her body, was now possible.

“This was a family effort,” says Thompson. “We all fought for this together. My support system was everything.”

Thompson wants her story to empower others to envision their life beyond SCD.

“Keep advocating for yourself,” says Thompson. “There are new, great treatment options out there. Keep asking, keep fighting. The challenge of the transplant is nothing compared to living with this disease day to day.”

Thompson and Brodsky are available for media interviews about this story and the half-matched bone marrow transplant.

To read more about this research, visit: A Cure for Sickle Cell Disease

A Family’s Fight: Bone Marrow Transplant at Johns Hopkins Enables Life Beyond Sickle Cell Disease 09/11/2025 With her brother as her donor and family support, Tatyana Thompson overcame years of pain to reclaim hope and health From left to right: husband Antonio Manns Jr.; patient Tatyana Thompson,...