The National Bone Marrow Transplant Link

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).
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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.
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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.

10/29/2025

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,...

10/27/2025

Easy strength training you can do at home
BY Carol Harrison
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5 minute read | Published October 23, 2025Medically Reviewed | Last reviewed by Carol Harrison on October 23, 2025
Just about every movement we do, like walking up stairs, carrying groceries and picking up our grandchildren, requires some strength. Our muscles support us, and if we take some time to give them a boost, it can help make these activities a little bit easier.

That’s why regular strength training, also called resistance training, is always included in physical activity recommendations. Strength training is different from aerobic exercises like running or cycling, which focus on strengthening your heart and lungs. Strength training helps make your muscles stronger.

Your strength can greatly impact your quality of life. It can help keep injuries and aches at bay. So, where do you start?

Key takeaways
Strength training can boost your metabolism, lower your risk for disease and help you age gracefully.
You can do strength training at home using your own body weight as resistance.
Be sure to warm up before your workout and stretch after your workout.
Talk to your doctor before starting a new strength training regimen if you have old injuries, are overweight or have heart problems.
How to start strength training
You can effectively strength train at home. All you need is to create some resistance, so your muscles work a bit harder than usual. The best way to begin is by following a strength training routine that uses your own body weight. You don’t need to buy weights or take a trip to the gym.

You can start with a series of simple exercises, such as push-ups, planks and squats. As you get stronger, you can increase your sets and/or repetitions. For example, start with 10 push-ups for the first few days of strength training. Then, aim for doing two sets of 10 push-ups.

You should do strength training twice a week.

6 easy strength training exercises

Using weights for strength training
As you get used to strength training, you may decide to add free weights like dumbbells or kettlebells to your routine. Using weights consistently can help your muscles grow larger. It can also help you target specific muscles.

A good rule of thumb is to start with a lighter weight and try to do three sets of 12. If you get to the end of your second set, and it feels the same as your first set, your weight is not heavy enough. So, you’ll need to adjust by trying a heavier weight until your muscle feels fatigued at the end of the second set.

If you’re trying to achieve a certain muscle size, you can gradually use heavier weights. But don’t lift weights that are too heavy for you because that could cause injury.

While not considered a weight, resistance bands can also be used in strength training. When you pull or stretch a resistance band, it creates tension that makes your muscles work harder.

Don’t forget to warm up and stretch
It’s a good idea to warm up before you work out and stretch after you work out.

Pre-workout warmup
Prior to strength training, try a low-intensity warmup like

marching in place for 3 to 5 minutes,
walking inside or outside for 3 to 5 minutes or
riding a stationary bike at low intensity for 3 to 5 minutes.
This prepares your body for strength training by increasing the blood flow to working muscles, helping to lubricate your joints as your body naturally prepares to work out and preparing you mentally for exercises.

Post-workout stretching
It’s a good time to do stretches after you finish exercising. I call it your reward for a job well done. Try to include stretches for every major muscle group, such as your shoulders, quadriceps and glutes. Aim to hold each stretch for 15 to 30 seconds.

Stretching after strength training is beneficial because it helps reduce muscle tension, relaxes the body and helps reduce the delayed onset of muscle soreness.

The benefits of strength training
Strength training can boost your metabolism. Muscles burn calories at a higher rate than body fat, even when you’re not exercising. This means you’re turning food into energy quicker, and growing and rebuilding cells more effectively. It also makes it easier to lose weight.

Strength training reduces your risk for disease by helping you stay at a healthy weight. This includes the biggest causes of early death: cancer, heart disease and stroke. In general, the more fit you are, the better your chances of staying healthy.

Strength training helps you age gracefully and with less pain. If you don’t stay physically active as you age, your balance, energy level and mobility will decline. We all lose muscle mass and bone density as we get older. Keeping your body strong helps you maintain your quality of life by reducing your chances of injury and bone loss.

Don’t fall for these strength training myths
Despite the benefits of strength training, several common myths exist. Get the facts to help you stay in shape and lower your cancer risk.

Myth: Strength training makes you bulky.

Fact: For most people, particularly women, the opposite is true. Strength training will help you burn calories, lose fat and develop muscle. This will help you look leaner and more toned. And the muscle you build will continue to boost your metabolism.

Sometimes, bodybuilders will use strength training to purposely enlarge or “bulk up” their physiques. But that requires a specific regimen that includes a strenuous exercise routine and a controlled diet. The average person who does simple strength training twice a week will not get bulky.

Myth: Strength training is bad for your joints.

Fact: Strength training is actually very good for your joints. The job of your muscles is to move your joints. Weight lifting strengthens muscles, which can help prevent injury. This is extra important as you age and your body composition changes.

Myth: Cardio burns more fat than strength training.

Fact: Strength training increases your metabolism because it takes more energy, or calories, to maintain muscle than it does to maintain fat. But that doesn’t mean you should abandon aerobic exercises like running or biking. In fact, the best way to burn fat and lose weight is to combine the two methods with high-intensity interval training.

Talk to your doctor if you have health issues
Talk to your doctor before starting a new exercise regimen like strength training. This is particularly important if you have old injuries, are overweight or have heart problems.

And always listen to your body. The goal of strength training is to work the muscles beyond what they’re used to doing. That way, the muscles adapt and become stronger. You should feel some muscle fatigue, but you should not be in pain.

As you continue building muscle, you can make adjustments and gradually increase the resistance.

To reduce your cancer risk, aim for at least 150 minutes of moderate exercise or 75 minutes of vigorous exercise each week, and do strength training at least twice a week.

Carol Harrison is a senior clinical exercise physiologist at MD Anderson.

Request an appointment at MD Anderson online or call 1-833-875-0030.

https://www.mdanderson.org/cancerwise/easy-strength-training-you-can-do-at-home.h00-159780390.html?fbclid=IwY2xjawNnkE9leHRuA2FlbQIxMQABHtxBqVSaa1dyPXN

Strength training can be simple and doesn't have to include weights or trips to the gym. You can use your own body weight to stay strong and reduce your cancer risk.

10/26/2025

Don't forget to sign up!

Join us on October 29th for this program on GVHD updates, support, patient experience and more . To register, go to https://event.webcasts.com/starthere.jsp?ei=1733905...
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 graft versus host disease. Daniel Gaylor, LCSW, OSW-C, ACHP-SW, BMT & CI Social Work Supervisor at the Moffitt Cancer Center will focus on the many psychosocial and emotional needs of all GVHD patients. Additionally, Judy Fine-Edelstein, a survivor of acute myeloid leukemia(AML) from Massachusetts, who is also a physician, will share her experiences and personal perspective as she thrives post-transplant. This webinar will be facilitated by Jennifer Gillette, our licensed staff social worker. There will be time for questions and answers following the presentation. Slides and the recorded program will be available post event on our website.
Special thanks to our sponsors: Sanofi and Johnson & Johnson

10/25/2025

Here is some evidence-informed tips on how doctors, patients, and caregivers can best work together during bone marrow transplant (BMT) survivorship to support long-term recovery, communication, and quality of life.

💬 1. Build a Collaborative Care Partnership

Key principle: Survivorship works best when it’s a partnership—not a hierarchy.

Shared decision-making: Patients should be included in all care decisions and educated on options and potential outcomes.

Transparency: Physicians should explain complex medical information in plain language, ensuring both patient and caregiver understand.

Caregiver inclusion: Caregivers should be present at major follow-up appointments (with patient consent) and have clear instructions on what to monitor at home.

📘 Reference: Institute of Medicine (IOM). “From Cancer Patient to Cancer Survivor: Lost in Transition.” National Academies Press, 2006.

🗂 2. Create a Comprehensive Survivorship Care Plan

Why it matters: BMT survivors often face long-term complications (GVHD, fatigue, endocrine issues, emotional distress). A written plan aligns the entire care team.

Include: treatment summary, potential late effects, follow-up schedule, medications, and emergency protocols.

Update regularly to reflect changes in health or treatment.

Share across specialties (oncology, primary care, rehabilitation, mental health).

📘 Reference: American Society for Transplantation and Cellular Therapy (ASTCT) & EBMT survivorship guidelines.

🧭 3. Prioritize Communication & Emotional Health

Best practices:

Regular check-ins: Doctors should proactively ask about physical and emotional well-being.

Active listening: Patients and caregivers should feel safe voicing fears, frustration, or symptoms.

Mental health support: Referrals to oncology social workers, psychologists, or survivorship counselors can help process trauma and adjust to a “new normal.”

Caregiver support: Encourage caregivers to have their own mental health outlets to prevent burnout.

📘 Reference: National Comprehensive Cancer Network (NCCN) Guidelines for Survivorship, Version 2025.

💪 4. Support Physical Rehabilitation and Health Maintenance

Teamwork recommendations:

Physicians: Provide referrals to PT/OT familiar with post-BMT complications like osteoporosis, GVHD, or neuropathy.

Patients: Report new physical limitations early to prevent worsening.

Caregivers: Encourage gentle activity and celebrate small progress milestones.

All: Focus on nutrition, sleep hygiene, and infection prevention as ongoing teamwork goals.

📘 Reference: ACSM Roundtable on Exercise Guidelines for Cancer Survivors, 2022.

🔄 5. Coordinate Between Specialists and Primary Care

Common barrier: Fragmented care after BMT.

The transplant team should send detailed updates to the patient’s primary care physician (P*P).

The P*P should oversee general health screenings, while the transplant team manages GVHD, immunizations, and transplant-specific monitoring.

The caregiver can help ensure all records are shared across providers.

📘 Reference: Majhail NS et al. “Long-Term Follow-Up After Hematopoietic Cell Transplantation.” Biol Blood Marrow Transplant, 2012.

❤️ 6. Foster Mutual Respect and Empowerment

Doctors: Recognize the emotional and lived expertise of survivors and caregivers.

Patients: Stay informed, ask questions, and communicate concerns promptly.

Caregivers: Balance advocacy with allowing the patient autonomy.

All: Focus on shared goals—long-term health, independence, and meaningful life beyond treatment.

📘 Reference: Blood & Marrow Transplant Information Network (BMT InfoNet), “Living Now: Life After Transplant” series.

🌟 Summary
Role Key Responsibilities Communication Tips
Doctor/Team Provide coordinated medical care, education, and referrals Use plain language; share written summaries
Patient Track symptoms, ask questions, follow up on care plans Be honest about physical and emotional needs
Caregiver Support, organize, and advocate while maintaining self-care Keep notes, attend key appointments, encourage independence

10/23/2025

AML Diagnosis Ten Years After 9/11: Lewis Christie’s Story
Posted: Oct 14, 2025

“I was at 9/11 that day. I watched those planes fly into the towers,” Lewis Christie said. “I watched those planes fly into the towers, and I was there every day thereafter for over a year breathing in those carcinogens.”

Ten years later, at the age of 71, Lewis was diagnosed with acute myeloid leukemia (AML).

He had felt sick and fatigued, so his doctor ordered a bone marrow biopsy. It showed a high white blood cell count and a very low red blood cell count. Lewis was immediately sent to the hospital for two blood transfusions and his diagnosis was confirmed.

Finding hope after a difficult diagnosis
The discovery of AML was devastating for Lewis. He had always been in good health, and he had no idea what he should do next. He saw several oncologists that gave him only one year to live. “There was no encouragement or path to take to survive,” Lewis said. After his initial diagnosis, he started chemotherapy that lasted 14 months.

Afterward, Lewis found new hope. “My wife and I found a wonderful oncologist who provided hope that a transplant could save or prolong my life,” Lewis said. A donor match was found through the National Bone Marrow Registry and Lewis received his transplant in March 2014. However, six months later, he relapsed.

A second chance after a second transplant
Lewis started chemotherapy while they looked for a second donor. In September 2014, his younger daughter donated her stem cells, which were given to Lewis through a blood transfusion. He experienced many difficult side effects. “I could hardly walk, rashes, coughing, blurred eyesight, uncontrollable hiccups, no appetite, muscle cramping, indigestion, numbness, and night sweats. After thirty days, when I could walk again, I was released from the hospital,” Lewis shared.

Lewis had to stay in his home for a year. He lived in a very clean environment and had to be very selective with his food choices. He only left the house for doctor appointments and wore gloves and a mask to avoid infections. Lewis continued to have low blood counts, but he received platelets weekly and injections to boost his white blood cell counts. It took months before Lewis began to feel better, but he slowly progressed to living a full life.

Lewis’s advice on living with cancer
Today, Lewis is living with another side effect from his transplant. He developed Graft Versus Host Disease (GVHD).

“The symptoms are bruising easily, skin peeling, trouble swallowing because food would get stuck in my throat, hardening and cracking of nails, dry eyes, reduced lung capacity that made it hard to breathe at times, tooth decay, and painful white patches in my mouth. While this may sound terrible, it’s not as bad as it seems. After being through two transplants, I can certainly handle all of this because I am still here!” Lewis said.

It has been thirteen years since Lewis was first diagnosed. He now plays golf and takes daily walks with his wife. For other people going through an AML or blood cancer diagnosis, Lewis offered three suggestions:

Being positive is the number one key to getting better.
Attend support groups and talk to other patients.
Use as many resources as possible to navigate your cancer journey.
How HealthTree can help if you’ve been diagnosed with AML
An AML diagnosis can feel overwhelming and frightening. You may need help gathering information and navigating your new reality. HealthTree can help. Our secure website is patient focused and provides many tools that can help you:

Find a specialist.
Connect with other patients.
Track your lab work.
Learn about your disease.

https://healthtree.org/aml/community/articles/lewis-aml-diagnosis-10-years-after-911

10/22/2025

JR's Tips on how he lives with Chronic Graft versus Host Disease
One of the first things I said when I was diagnosed was "This is a mistake; I have too much stuff left to do!" Followed by "I've closed the bar down my whole life; I’m not going home early now!" My family and I rallied fast with our medical team, and I wanted to participate in anything that could help me and other people’s situations regarding blood cancers. That led to participating in the Light the Night rallies in Sacramento, CA. I did that once before transplant and once after and the first thing I noticed was that there weren't many white lanterns which signified a survivor. That fortunately has changed for the better and I'm happy that many are now becoming survivors! This has been and continues to be a marathon, not a sprint due to the process of living with chronic graft vs host disease (cGvHD). However, the treatments have greatly improved, and I can report that my experience is improving every day on my current medication treatment plan. I participate in water aerobics for six hours a week and get two-hour massages twice a month along with physical and occupational hand therapy. You must keep moving your body to exist in some harmony with cGvHD. I'm happy to be here!

10/21/2025

Join us on October 29th for this program on GVHD updates, support, patient experience and more . To register, go to https://event.webcasts.com/starthere.jsp?ei=1733905&tp_key=0cb8dab5e1

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 graft versus host disease. Daniel Gaylor, LCSW, OSW-C, ACHP-SW, BMT & CI Social Work Supervisor at the Moffitt Cancer Center will focus on the many psychosocial and emotional needs of all GVHD patients. Additionally, Judy Fine-Edelstein, a survivor of acute myeloid leukemia(AML) from Massachusetts, who is also a physician, will share her experiences and personal perspective as she thrives post-transplant. This webinar will be facilitated by Jennifer Gillette, our licensed staff social worker. There will be time for questions and answers following the presentation. Slides and the recorded program will be available post event on our website.

Special thanks to our sponsors: Sanofi and Johnson & Johnson