Coping with GVHD after my stem cell transplant

I decided to keep a diary of my stem cell transplant experience so it might help others in preparing for their stem cell transplants. 
 
Just the words "graft vs. host disease" (GVHD) are enough to make stem cell transplant patients shiver. We've all heard the stories of the worst cases.

After everything I'd learned about stem cell transplants leading up to my own this past summer, I was afraid of developing GVHD even though my doctors told me the majority of patients actually don't end up developing this condition.

And then it happened. Sixty-six days after I underwent a stem cell transplant to treat my chronic lymphocytic leukemia (CLL), a rash appeared on my legs and arms. I was pretty sure it was GVHD. This was confirmed the following morning when one of my doctors, Issa Khouri, M.D., and his team looked at my very red and splotchy legs and arms.

My GVHD treatment
Big deal, right? In truth, it wasn't. Melanie and I were prepared for this. We were pretty sure of I had GVHD even before I visited the doctor. This was simply a small speed bump on the way to full recovery.

All we needed was the treatment plan so we could get rid of it in the least amount of time. I was prescribed a steroid cream and prednisone. A week later, the GVHD was under control.

The key was catching it early so that I could receive prompt treatment. I suppose it was the research we'd done before my transplant that gave us the peace of mind to simply accept that it was easily treatable. But, as an added precaution, I posted the finding on my Facebook page so all of my friends would know to pray. They responded in marvelous ways -- and so did my GVHD.

What is GVHD?
GVHD occurs when the new cells from a transplant attacks not only the cancer but also the body.

GVHD can attack any organ or body tissue. The most common locations are the skin, mouth, gut, liver and lungs. GVHD also can attack joints, eyes or any other tissue. That is why it is very important to report all abnormalities, no matter how trivial they seem.

GVHD can be acute (usually occurring within 100 days of the transplant) or chronic. Symptoms of chronic GVHD can range from a temporary rash like mine to more chronic issues like joint problems, dry eyes, or symptoms similar to an autoimmune disorder.

The immune system doesn't have a mechanism that allows it to naturally defend against GVHD. That's why early detection and proper treatment are so important.

This also is partly why your care team performs daily blood draws following a stem cell transplant. The nurses are specially trained to work with transplant patients. They know what to look for. They ask questions. But it is the job of us, the patients, to be honest and aware of our own bodies.

GVHD is a serious matter, but the good news is the team at MD Anderson knows exactly how to treat it with great success. Personally, I would not go anywhere else in the world for treatment. As I look around, I see that people from around the world feel the same way.

Chronic lymphocytic leukemia (CLL) is one of the cancers MD Anderson is focusing on as part of our Moon Shots Program to dramatically reduce cancer deaths. Learn more about our CLL Moon Shot.