How to identify and cope with chronic GVHD of the stomach and intestines

Posted June 30th, 2017 by Be The Match and filed in Patient Stories
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Dominique, transplant recipient (center), with her parents

About 6 months after her transplant, Dominique knew something was wrong when trying to eat caused too much pain.

“I was having a great amount of pain after I ate. I couldn’t drink anything. It hurt too much to swallow,” she says. “So when I told my transplant doctor what was going on, we got a gastrointestinal (GI) doctor involved.”

It was important that Dominique contacted her transplant doctor right away. Getting help from your transplant team as soon as possible means that any treatments they give you will have a better chance to work.

And, involving a GI doctor, who specializes in the stomach and intestines, helped her get the best possible treatment. In Dominique’s case, the GI doctor ordered a colonoscopy and an EGD (a doctor places a flexible tube through the mouth into the stomach and small intestine). Those tests, plus a biopsy (testing a sample of tissue taken from the GI tract) led to a diagnosis of chronic GVHD of the stomach and intestines.

Keeping an eye out for the symptoms

Dominique, now 23 years old, received a transplant for severe aplastic anemia 2 years ago. She offers some advice on how to identify and cope with chronic GVHD of the stomach and intestines.

“Pay attention to your body. If something doesn’t feel right, go get it looked at or checked out,” she says. “Don’t ever feel like you’re making up your symptoms.”

Some of the symptoms Dominique had, in addition to not being able to eat very much, included constipation, feeling sick all the time, and extreme tiredness. “It was just hard because I couldn’t eat. I was getting frustrated. I had to watch what I ate because certain things would irritate it more,” she says.

These symptoms are quite common in people who get chronic GVHD of the stomach and intestines, according to Dr. Alousi from MD Anderson Cancer Center. Other signs to look for include:

  • Bloating
  • Decreased appetite
  • Diarrhea
  • Feeling full after eating very little
  • Nausea or vomiting
  • Stomach pain
  • Weight loss

Dr. Alousi notes that when chronic GVHD of the stomach and intestines is diagnosed, doctors pay close attention to two key symptoms: weight loss and malnutrition. In fact, he says, “weight loss is the main symptom used to measure how severe GVHD of the stomach and intestines is”. He recommends that people “track their weight after transplant and tell their doctor right away about any weight loss.”

Because people can have problems eating after transplant, he also suggests keeping a food diary to help you and your doctors determine the causes of any symptoms or weight changes. You can even use your phone to help. “There are a number of smartphone apps that help you track your diet and keep your nutrition goals.”

Treating chronic GVHD of the GI

To treat her GVHD, Dominique’s doctors prescribed steroids, which is common for this kind of GVHD. The steroid treatments eventually worked for her, but the medicine had some side effects that lowered her quality of life for a time.

“Just being on the steroids I couldn’t be outside, I couldn’t walk,” Dominque says. “If I did have the energy to go out, I could only do it for an hour or two before I was sleeping or too tired to do anything else.” She says, “It put a good pause on my whole life for a while.”

Seeing a dietitian is important to help patients with chronic GVHD of the stomach and intestines improve their quality of life, says Dr. Alousi. “Dietitians can recommend dietary supplements and offer advice to manage symptoms.” And because weight loss and malnutrition is related with lower strength and endurance, Dr. Alousi notes that “patients with these symptoms should also see a physical therapist.”

Dominique says that she’s now feeling better. “I’m not cooped up in my house anymore,” she says. “I’m out doing stuff. I’m doing pretty well emotionally.”

Her message to people who get chronic GVHD of the stomach and intestines is to give the treatment time to work. And most important, she says, if you feel sick, tell your doctor, tell a family member. “Get it looked at because you can never be too cautious.”

For more information on chronic GVHD of the stomach and intestines, view our new fact sheet, developed jointly by Be The Match and the Chronic GVHD Consortium.

One woman’s experience with GVHD of the vagina and vulva

Posted March 6th, 2017 by Be The Match and filed in News, Patient Stories
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About 6 months after her transplant in 2014, Lola felt burning and discomfort near her vagina. She went to the doctor many times and over the course of 18 months she had treatment for a urethra blockage and low hormones from menopause. Finally, her doctors determined the cause was graft-versus-host disease (GVHD) of the vagina and vulva.

Symptoms of GVHD of the vagina and vulva

Chronic GVHD of the vulva and vagina happens when the donor cells attack these tissues. The vulva is the outer part of the vagina (birth canal). According to Pamela Stratton, MD from the National Institutes of Health, it’s important to notice changes in your genitals and tell your transplant team or gynecologist about those changes. “If you know it could happen and start feeling the burning sensation, then you might go to the gynecologist and get treatment,” says Lola.

Some of the common symptoms for vulvar and vaginal GVHD include:

  • Dryness
  • Pain with urination, while at rest or during vaginal sex
  • Redness or open sores in the vulva or vagina

Diagnosing GVHD of the vulva and vagina

"What is GVHD?" video from our Basics of Transplant series

“What is GVHD?” video from our Basics of Blood and Marrow Transplant series

“Chronic GVHD of the vulva is very common. It affects about 1 in 4 women after transplant. Vaginal chronic GVHD is less common. Since the vulva and vagina are different parts of your anatomy, treating one area of chronic GVHD doesn’t prevent or lower your risk of getting chronic GVHD in the other area,” Dr. Pamela Stratton says.

It’s important to diagnose chronic GVHD of the vulva and vagina early because early treatment can ease your symptoms faster. It also lowers the chances of it becoming a more serious problem. Doctors diagnose it with a gynecological exam. “They may take cultures and a tissue sample to diagnose chronic GVHD and rule out an infection or other problem,” says Dr. Stratton. For Lola, she felt relieved when she got the diagnosis. She no longer felt alone, but was encouraged to know what it was and learn how she could deal with it.

Management and treatment

Soon after Lola’s diagnosis, she started treatment with a topical steroid. Dilators or vaginal sex can also help keep the vagina from narrowing or closing. Currently, there is no known way to lower your risk of getting chronic GVHD of the vulva or vagina.

Each woman has different symptoms at different times, so it’s important for the gynecologist and transplant team to work together to offer the best treatment. “Treating specific genital GVHD changes is an important first step. Women also benefit from a multidisciplinary team approach to their reproductive health with members of the team including gynecology, urology, and sexual therapy specialists, as well as pharmacists. This team can help address effects associated with chronic GVHD including depression, stress, and menopausal changes,” Dr. Stratton says. Lola agrees, “It can cause depression. Talk to your health care team. You’re not complaining, but people don’t know you’re having a problem unless you tell them.”

Your quality of life is important, and that includes your sexual relationships. Lola encourages other women going through this to not be shy. “Modesty is difficult for a lot of people to overcome. So stand in front of a mirror and say the words ‘vagina’ and ‘vulva’ a lot until it becomes normal. Your vagina is a part of your anatomy like your elbow except it’s not out in public. And all women have one.” Talk openly with your health care team and sexual partner about how you feel. This is important for your health, your quality of life and your recovery.

For more information

  • Contact the Be The Match Patient Support Center. Receive free counseling support from a licensed BMT social worker to help you and your family cope with GVHD. Call 1 (888) 999-6743 or email
  • Download Fast Facts: Chronic GVHD of the Vulva and Vagina. The fact sheet offers information on how to ease symptoms, how it can be treated, and when to call your doctor. It was developed by Be The Match and the Chronic Graft-versus-Host Disease Consortium.

GVHD of the Gut: Advice to Manage Symptoms

Posted August 13th, 2013 by Be The Match and filed in News, Patient Stories
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Dr Navneet for blogFull interview with Dr. Navneet Majhail, July 2013

What is GVHD of the gut?

Graft-versus-host disease (GVHD) of the gut is an immune reaction of the donor cells against the recipient’s gastrointestinal system. Any part of the gastrointestinal tract can be involved, from the throat to the colon.

It can manifest as acute (early) or chronic (late) GVHD. Both are very distinct complications of allogeneic transplantation.

Frequently, GVHD of the gut occurs in combination with GVHD in other areas of the body (e.g., skin and liver). Among patients with acute GVHD, approximately half will have gut involvement. Similarly, the gut is an organ that is commonly involved in chronic GVHD.

  • Acute GVHD of the gut typically occurs in the first 1 to 3 months post-transplant, although in some circumstances it can occur later (for example, after infusion of donor lymphocytes to treat cancer recurrence or certain infections).
  • It shows as nausea, vomiting, diarrhea, weight loss, and/or abdominal pain.
  • Chronic GVHD of the gut usually presents itself at 3 months post-transplant or later and patients present with symptoms of weight loss, impaired absorption, nausea, diarrhea, and/or general failure to thrive.
  • In some instances, patients with acute GVHD of the gut can later develop chronic GVHD of the gut.

What tests are done to confirm GVHD?

  • In addition to meeting with your doctor and reviewing all clinical symptoms, a variety of tests can be performed to confirm the presence or absence of gut GVHD. Some of these can include:
    • Upper gastrointestinal endoscopy (to visualize the throat, esophagus and stomach), colonoscopy, and tests to measure the ability of intestines to absorb various nutrients.
    • A biopsy of the lining of the intestinal tract.
    • Blood and stool tests and radiologic tests (e.g., CT scan of the abdomen). These tests are usually done to exclude other causes of the patient’s symptoms (e.g., infection).

How is GVHD of the gut managed with medication?

Treatment of gut GVHD consists of two broad approaches that go together. First, is the use of immunosuppression to control the graft-versus-gut immune reaction. This is usually accomplished by using drugs such as steroids (e.g., prednisone) and calcineurin inhibitors (e.g., cyclosporine, tacrolimus). Second, and equally important, are supportive care measures to ensure that symptoms of GVHD are well controlled (e.g., medications to control nausea, vomiting, and diarrhea) and that patient nutrition is not compromised (e.g., using calorie supplements or intravenous nutrition).

Is there a particular diet patients may be asked to follow to help manage their symptoms? (Example: bland, high fiber, low fat, etc.) What about certain food?

There is no special diet that is recommended for gut GVHD. However, the types of foods one takes in can be tailored somewhat according to the underlying symptoms.

Sometimes, this does involve trying out different foods to see which are better tolerated. Spicy foods should be avoided. Some, but not all patients can get a feeling of bloating or worsening of symptoms with the use of dairy products. Some patients with severe symptoms may be asked to stop eating food for a period of time to give the gut some time to heal. In these situations, intravenous nutrition is given and once symptoms improve, food is gradually reintroduced. Small but frequent meals tend to be better tolerated than three large meals in a day.

In addition to diet and medication, are there other things patients can do to help manage their symptoms?

Exercise, to whatever extent possible, can help with general well being and quality of life. Sometimes patients have anticipatory nausea/vomiting, where the thought or smell of food can cause symptoms. For these patients, taking an anti- nausea medication 30 minutes before eating might help. Eating a well- rounded mix of foods is the best way to get the nutrition needed. However, if patients are not able to eat much, nutritional supplements (e.g., Boost® , Ensure® ) can help with getting the daily nutrition their body needs. In my experience, these supplements work well when taken cold and in small amounts over the day.

What advice would you give to patients who notice that their current treatment regime is no longer working as well (as effective) as it once was?  How will they know when their current regimen is not as effective?

Patients should be aware of the symptoms of gut GVHD. If such symptoms occur, they should bring them to the attention of their doctors right away. Depending on the nature and severity of symptoms, tests might be delayed (e.g., some medications might be discontinued) or carried out right away. Doctors also look for evidence of GVHD on other parts of the body (e.g., skin), which can determine how quickly evaluation for gut GVHD is carried out.

One important aspect of coping with GVHD treatment is patience – it can take days to weeks to see stabilization and then improvement of symptoms. Treatment for acute GVHD of the gut can last at least 6 to 8 weeks and that of chronic GVHD can last up to a year or longer. Recurrence or worsening of symptoms will be an indication that the current regimen is not effective. However, at the same time, other post-transplant issues can cause similar symptoms (e.g., drugs, infections). And so, it is important that patients work with their doctors to determine whether symptoms are due to GVHD of the gut or because of another reason. Also, on occasions, other complications that cause the same symptoms can occur with gut GVHD (e.g., intestinal infection).

What would you tell patients who are worried about getting GVHD of the gut? What signs and symptoms should they be watching for?

Patients should definitely talk with their doctor about any questions they have about GVHD. It is important to tell your doctor about any over-the-counter medications, supplements, or home remedies you are taking or thinking about taking. Medications, including supplements, can have interactions with other medications that are used for the treatment of GVHD. Also, some medications and supplements may cause harm for patients who are immunosuppressed.

Read the article on GVHD of the gut from the Living Now e-newsletter.


Skin GVHD: How to spot and tips to manage

Posted May 14th, 2013 by Be The Match and filed in Patient Stories
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Dr. Stephanie LeeGraft-versus-host disease (or GVHD) of the skin is a reality for many transplant recipients. As a common side effect of transplant, it can affect many parts of the body. Do you know how to spot skin GVHD? Do you need advice for coping with the ongoing management of GVHD? Dr. Stephanie Lee and Everett, a  transplant recipient, offer insights and advice to help.

What you should do once a month
Whether or not you’re currently experiencing GVHD symptoms, it’s always important to look for changes.  “The sooner we can treat your symptoms, the better. We want you healthy,” says Dr. Stephanie Lee, Professor of Medicine at Fred Hutchinson Cancer Research Center.

“Once a month, stand naked in front of a mirror and look at your body. Feel your skin. Look for changes. You know your body better than anyone else,” she says.  “If you notice anything unusual, tell your doctor right away.  Don’t ignore early symptoms of skin GVHD, which can include: a rash, itching, thickness, tightening, burning (in rare cases), or problems moving joints.

When it just won’t go away
Everett has been managing chronic GVHD of the skin for the past ten years. While his GVHD has not been severe, it’s certainly been an ongoing challenge. He experienced a defining moment many years ago with his doctor. “After a frustrating episode with my GVHD, I asked if she could just fix it and she said, ‘No. You have this.’ That’s when I really understood that this is something I would have to manage for life.”

Everett, transplant recipientEverett explains that the appearance of his GVHD— loss of pigment (dark and light lesions) on his face, legs and feet—can be uncomfortable at times. He works in sales and often has face-to-face interactions with clients. “It can be an issue,” he says, “People can tell something is going on.”

Scenarios like this can be difficult, but Everett says, “I’m grateful that I have the type of personality that allows me to stay positive and not sweat the small stuff.” He encourages others to have a positive attitude and to work closely with their doctor. “If you can, stay with the one doctor. And always follow doctor’s orders.” Through a referral from his transplant doctor, he’s had the same dermatologist through it all. This relationship has helped him learn to manage his GVHD in new ways, like trying different lotions and ointments prescribed by his doctor.

Dr. Lee agrees that GVHD can be challenging, but working together with your medical team and following precautions like avoiding the sun can make all the difference. “Patients can become frustrated with long-term management of GVHD— especially if treatments aren’t working as well as they once did. But don’t give up. Talk to you doctor and let us find what works best for you,” says Dr. Lee.

Team up with your doctor to find the best treatment
“Many treatments are available but it comes down to what works best for you. Sometimes that means trying different treatments regimens—what works one day may not work as well next month, so tell us how things are going and we can keep trying new things together,” Dr. Lee says. “If a treatment is not working well—don’t try to adjust it yourself, that could be dangerous. That’s what we’re here for—to help you stay healthy and feel better.”

Learn more tips to help prevent and manage GVHD or share your experience with GVHD below.

Know your risk factors for developing heart problems after transplant

Posted February 5th, 2013 by Be The Match and filed in Patient Stories
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Certain types of treatment before your transplant or complications that happen after transplant can sometimes increase your risk of heart problems. So what can you do now? Dr. Saro Armenian explains some of the signs and symptoms you should be looking for, the questions you should be asking your doctor, and what you can do now to improve your heart health.

Q: What effect does my treatment before transplant have on my heart?

The treatment you received before your transplant has just as much of an effect on your heart as the transplant itself. Treatments before your transplant that increase your risk of heart problems include: chemotherapy with a group of drugs called anthracyclines (doxorubicin, daunomycin, idarubicin, epirubicin) or past treatment with radiation involving the chest wall.

It is very important that you know the types of chemotherapy or radiation you received. Most transplant centers can give you a summary of your treatment history. This is a good way for you and your doctor to talk about any long-term effects that your treatment may have on your heart health.

Q: Could my personal or family health history have an impact on my heart health?

As a transplant recipient, risk factors like diabetes, hypertension, and abnormal cholesterol (that shows up after transplant) can also increase your risk of heart disease. These risk factors, combined with transplant-related treatment, can put you at a greater risk for heart issues. You should tell your health care team if there is a family history of cardiovascular disease such as heart attacks, strokes, or heart failure.

Q: What are signs and symptoms of heart problems?

Symptoms of heart problems for transplant recipients are the same as the rest of the population. Symptoms include, but are not limited to: shortness of breath, dizziness, lightheadedness or near-fainting, chest pain, swollen ankles or feet, unexplained cough and wheezing that will not improve with time, periods of heart racing or throbbing, or periods of irregular heartbeat.

Let your healthcare team know any time you have any of these symptoms or if you’re worried about your heart health.

You may not have obvious symptoms, but abnormalities can show up on routine tests, like an echocardiogram (ultrasound of the heart), EKG, or blood tests.

Q: If I have any of the symptoms mentioned, what heart problems could I have?

Blocked or scarred blood vessels of the heart (coronary artery disease), weakening of the heart muscle (cardiomyopathy or heart failure), irregular heart rate or rhythms  (arrhythmias), problems with the valves within the heart (valvular problems), or scarring of the sac around the heart (pericardial disease), are all things to watch for. These health conditions are often life threatening and are one of the leading causes of death in long-term survivors of transplant.

Also, GVHD medications such as cyclosporinesteroids, and other groups of medications increase the likelihood for premature heart disease.

Q: What tests should I have to find out if I have any issues?

A good starting point is making sure your doctor has a detailed history of your health, including symptoms, family history and medications you’ve taken. Also, you’ll want to get a physical exam that checks blood pressure, heart rate, and your heart and lungs. Lastly, some doctors may want to do follow-up tests such as x-rays, echocardiograms or an EKG.

Editor’s note: Post-transplant guidelines from Be The Match® provide screening and preventative steps for transplant recipients. For your heart, the guidelines recommend:

  • Checking for heart and blood vessel risk factors, such as high cholesterol, high blood pressure, obesity, history of smoking
  • Discussing a “heart healthy” lifestyle (regular exercise, healthy weight, no smoking, dietary counseling)
  • Receiving early treatment of risk factors such as diabetes, high blood pressure and high cholesterol
  • Find out if you need to take antibiotics before a dental procedure to prevent a bacterial infection.

Q: Are young transplant recipients also at risk for heart issues?

Yes. Because transplant recipients are at a higher risk of developing heart disease than the general population, it can also occur at a much younger age. The process of developing heart issues can increase because you had pre-transplant treatment and may have other risk factors.

The good news is that younger patients who take charge of their health can really reduce their risk with lifestyle changes and medication.

Q: How can I keep my heart healthy as a transplant recipient?

You can cut down your risk of heart problems by not smoking (or quitting if you currently smoke), maintaining a healthy body weight, limiting fat in your diet to  no more than 30% of calories, and exercising regularly for at least 30 minutes on most days of the week.

If you have heart risk factors such as hypertension, diabetes, or abnormal cholesterol, make sure your primary care doctor keeps an eye on your blood pressure, blood sugars and cholesterol levels.

Q: What are ways I can be proactive about my heart health?

It’s a good idea to maintain regular contact with your healthcare team, so that you can have routine screening for early heart disease. By finding any issues early, you can minimize the risk of life threatening heart problems.