There is Life after GVHD

A Caregiver's Perspective

By Rona Trachtenberg

Editor’s Note: The following essay describes one patient’s very difficult battle with GVHD. Both he and his wife have maintained an incredibly positive attitude, despite many challenges. Readers should note that although the couple’s experience is not unique, most patients who develop GVHD do not experience as severe a case of GVHD as described below.

In 1994, my 35-year-old husband Lee and I thought our lives were perfect. We were healthy and happy. We had been married five years and were thinking about starting a family. Lee was a successful veterinarian and I was a promising marketing executive. After the long work week, we enjoyed the outdoors, our dog and cats, and our social life. We were caught totally off-guard with the news that Lee’s back pain turned out to be non-Hodgkin’s lymphoma.

Having known each other since fifth grade in Brooklyn, New York, we channeled our collective strength and survived a two-month autologous stem cell transplant. A year later, Lee was back at work, part-time, but extremely fatigued for the next two years.

In 1998, we learned that Lee’s aggressive lymphoma returned and that he now needed an allogeneic bone marrow transplant (BMT), from a matched unrelated donor to survive. However, this type of transplant would put him at risk for developing graft-versus-host disease (GVHD)—a serious complication we didn’t have to think about for his first BMT.

We were scared. To conquer my feeling of despair and to take some control over this helpless situation, I armed myself with as much information as I could about BMTs and GVHD. I thought that if I became an informed caregiver, I might be able to improve Lee’s chance for survival.

Lee and Rona Trachtenberg

A counselor at Cancer Care Inc., a support organization for cancer patients and their families, helped me channel my fear into constructive energy. I surfed the Internet and discovered the Association of Cancer Online Resources (ACOR)—a website that hosts many electronic mailing lists where people touched by cancer can share information and support. I spent several months on one of these lists—BMT-Talk—reading letters that had previously been posted by patients and caregivers, sharing other patients’ triumphs, learning the pitfalls of BMT, familiarizing myself with the medical acronyms, seeing which medications worked, and venting my frustrations with other like-minded caregivers.

At the suggestion of a counselor at the National Marrow Donor Program, I read a book available from BMT InfoNet called Bone Marrow Transplants – A Book of Basics For Patients. It became my medical bible. Thanks to that book, I learned everything I needed to know about my husband’s BMT and GVHD before we even stepped foot into the transplant center. Even with this knowledge, I was still a nervous wreck when the day came to admit Lee for his allogeneic BMT.

Dealing with GVHD

Our first encounter with GVHD came a month after Lee’s transplant. Lee had been put on methotrexate and tacrolimus to decrease the risk of developing acute GVHD, but 27 days after his BMT, a bone marrow biopsy revealed that there were many lymphoma cells in his bone marrow. His doctor discontinued the GVHD medications so that the donor marrow cells could destroy the pesky lymphoma cells. One month later, the lymphoma was gone, but acute GVHD had reared its head in the form of skin rashes and diarrhea. Although a short course of methylprednisolone controlled the acute GVHD, we weren’t out of the woods. Two and a half months later, Lee developed chronic GVHD.

Living With Chronic GVHD

Although most patients who develop chronic GVHD have only a mild or moderate case, Lee’s chronic GVHD was more extensive. He developed a skin rash and sunburn-like lesions, dry eyes and mouth, mouth sores, nausea and diarrhea, a tightening feeling in his muscles and joints, liver problems, and severe breathing difficulties.

I visited ACOR’s GVHD mailing list and communicated with others who were having similar problems. I learned about new medications and treatments, and discovered how other caregivers were coping with the stress of living with GVHD. It was hard to explain to family and friends, who have never experienced GVHD, what we were going through. I found it so comforting to “talk” online with other GVHD patients and caregivers who really understood where I was coming from.

Fortunately for Lee, his doctor had extensive experience caring for patients with GVHD. Through her, Lee was able to enroll in a clinical trial and receive an experimental drug called etanercept (Enbrel®). After several injections, Lee began to sense improvement in his breathing and easing of his stiff muscles and joints. A procedure called extra corporeal photopheresis (ECP®) also helped Lee get his GVHD under control, as did a drug called URSO (Actigall®).

Tips We Have Learned

Gathering information has been a powerful tool that has allowed me to become a valuable and respected member of my husband’s medical team. I strongly believe that my husband’s survival depends on input from the Lord, the doctors, and the caregiver (me), and I do as much research as I possibly can. We are fortunate that our medical team not only accepts Lee and I as partners in his care, but they also seek out our input and support many of our suggestions.

Through much trial and error, we’ve found many non-prescription solutions for the problems created by Lee’s GVHD. Lee keeps his skin moist by bathing in Aveeno® Bath oatmeal, uses skin-sensitive moisturizing soap (Dove® or Oilatum®), body moisturizers (Utterly Smooth®, cocoa butter, baby oil, aloe vera gel), lip moisturizers (Carmex® and Blistex®), and even special tush protection (Mentor Urology Moisture Crème Step 2®). He safeguards his skin with sunscreen SPF 45 and wears sun-protective clothing by Solumbra®.

To prevent mouth sores, Lee uses a soft bristle brush and replaces it every two weeks. He brushes with a non-sting toothpaste (Biotene®), swishes with Oral Dent® and Ultimate Natural Daily Rinse®, stays away from spicy foods and acidic beverages, and sucks on sugarless candies to help increase saliva production. Eating small meals and drinking liquids before swallowing solids has helped him increase his calorie intake.

Lee washes his eyes with Bausch & Lomb’s Eye Irrigation Solution® in the morning, lubricates them with a combination of Bion Tears® and Celluvisca® during the day, and protects them with Lacrilube® eye ointment at night. He wears sunglasses when in sunlight or bright lights. When Lee has some energy, he bicycles on an at-home stationary bike, rows on his rowing machine, and does T’ai Chi to keep muscles and joints moving. To protect against infection, we keep two indoor HEPA® filters on at all times and make sure everyone we come in contact with washes their hands often. We wear masks and latex gloves outdoors and stay out of crowds.

Our Life Today

Our typical day still consists of Lee taking three different drugs to control the GVHD. He’s on 11 other medications to stave off infections while his immune system is compromised. His skin and eyes need constant moisturizing. He is an outpatient for blood tests and clinic evaluations. Despite this somewhat regulated medical schedule, we look for something pleasant to do every day. We enjoy a nice slow walk at sunset, a favorite TV show, an audio tape from the library, and getting mail from family and friends. Even grocery shopping, during off-peak hours, is a welcome distraction. We try our best to make lemonade from lemons.

The Future

Living with GVHD has created for us a new definition of “normal.” I had to quit my job to become Lee’s full-time caregiver. Lee got fired when he told his boss his cancer had come back. We miss our pets dearly as we chose to find them new homes before the BMT, because we felt the risk of infection was too great. It is unlikely we will ever have children, as we are in our early 40s, and our many medical bills absorb our modest monthly disability check. However, thanks to modern medicine, we hope someday soon the GVHD will burn itself out, Lee can be weaned off his medications, and we can build back the life we once knew.

Survivor has GVHD on the run