Tips on managing graft vs. host disease symptoms – Part 1 of 5

Dear  Patient…

It takes courage and perseverance to recover from a stem cell transplant. There’s a gazillion medication to take; frequent sanitation of your home; protecting yourself from infections and people; exercising; completing your daily medical regimen sometimes several times a day; preparing foods according to food safety guidelines, and so on. As you are finding out, it is not easy. But with a little help, it can become less of a struggle. This post is divided into four posts. This section briefly explains what graft vs. host disease is and who is susceptible. Parts 2-5 are covered in the next posts and are long because finding and managing what works for you is a process…meaning, it doesn’t happen overnight.

After a stem cell or bone marrow transplant, it is typical to have some side effects or

A simplified explanation of allogeneic stem cell transplant process

complications from the transplant called graft versus host disease (GVHD) if you’ve had an allogeneic transplant. Graft versus host disease occurs when your donor’s cells see host (you) cells as foreign and start to attack them. Symptoms can range from mild, severe and even fatal.

To clarify, there are two types of stem cell or bone marrow transplants – allogenic and autologous. I won’t go into the details of explaining because first, I am not an expert in stem cell transplantation and second, there are many excellent resources that explain

leukemia cells are purple.  Source: bloodjournal.org

the procedures clearly. Click here for a few websites. If you’ve had an autologous stem cell transplant, meaning, your own stem cells were harvested before the transplant, you will not get GVHD. 

Because I had CMML (primary diagnosis) which progressed to acute leukemia, an allogeneic (stem cells by a donor) stem cell transplant was the only option and only cure for my type of leukemia. I did develop GVHD in nearly every organ and wish to tell you, the symptoms do subside over time with prompt and ongoing symptom management.

Getting and treating graft versus host disease is very individualized. Some patients get GVHD of one or a couple of organs. Other patients, like myself, have GVHD of multiple organs. In my case, GVHD affected my eyes, mouth, skin, lungs, gut or gastrointestinal

graft versus host disease

and muscles. There is a positive side to GVHD, and that is, it creates an opposite beneficial response called graft versus tumor effect (aka graft versus leukemia/cancer effect).  Graft versus tumor effect is the good response that happens when your donor cells attack any lingering cancer cells that the conditioning chemotherapy didn’t kill. Conditioning chemotherapy is the chemotherapy you receive right before you get the stem cell transplant to rid of any lurking cancerous cells in the bone marrow.

The goal in GVHD is treating the symptoms AND preventing the organs from getting worse. So report any worsening and/or new symptoms promptly so your healthcare team can treat your symptoms immediately. If you are an under-reporter, meaning you minimize your symptoms – don’t do it! You won’t get any gold stars for under-reporting, just further damage to your organs.

In addition to taking all your prescribed medications religiously, here are my tips for managing graft versus host disease symptoms…you may find these work for you too. 

To be continued…

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