Ron Carlsen Beats Early Onset MDS; Grapples with Post-Transplant GVHD | Aplastic Anemia and MDS International Foundation

Ron Carlsen Beats Early Onset MDS; Grapples with Post-Transplant GVHD

In August 2004, I was 42 and going through the annual checkup routine. I felt fine and had no reason to suspect anything was starting to go wrong. I was called back twice to have more labs done. My doctor wouldn’t speculate on what might be happening, but soon I was referred to a hematologist/oncologist. This is when a bone marrow biopsy was done and it confirmed that I had MDS, with the 5q deletion. There were no real changes in how I was feeling but they stated I currently could expect to live another 12 to 20 years, without a bone marrow transplant, but a bone marrow transplant was expected to eventually occur.

Low Risk MDS Quickly Becomes High Risk

Things changed quickly. I started to bruise easily with no explanation, and my red blood cell count started to drop. Eventually, I was put on epoetin alfa (Procrit°), taken by injection. My counts continued to drop and I became increasingly fatigued, and it became necessary to try another treatment. Fortunately, azacitidine (Vidaza°) had recently been FDA-approved and was clearly another option to investigate. My treatment with this new drug was another injection in the stomach, like epoetin alfa was.  Azacitidine caused nausea, and I was given a number of anti-nausea treatments. It only worked a short while and my counts continued to drop. I was switched over to lenalidomide (Revlimid°), also recently FDA-approved, and was tapered off azacytidine before starting lenalidomide.

From diagnosis in August 2004 to October 2006, (just two short years), three trial drug treatments were tried, epoetin alfa, azacytidine, and lastly, lenalidomide. By October 2006, I had become blood transfusion dependent, requiring one each week. The new problem was my platelets which had dropped to almost nothing.

In October 2006, not happy with these results, my primary hematologist/oncologist sent me back to University of Wisconsin (UW) Hospital Cancer Center in Madison Wisconsin for a second consultation. My UW hematologist/oncologist recommended we do a transplant as soon as possible. He stated that without a transplant I had maybe 1 ½-2 years left. My platelet count was very low and would cause me to hemorrhage.

Shortly after diagnosis my siblings were tested to see if one was a match for a transplant, to prepare for the day one was needed.  None of my siblings were a match and when it became time to find a donor, we knew that a transplant from an immediate relative was not possible. Through the national marrow registry, a complete match was found; my match was a woman in Germany.  On March 9, 2007 the stem cell transplant occurred with no immediate complications however a long road of chronic GVHD followed post transplant.

With MDS Under Control, Ron Faces a New Health Challenge

My chronic graft-versus-host disease (GVHD) started after the transplant, first in the most common ways; skin and gut, and with time the flare-ups were more severe, resulting in frequent hospitalizations. One GVHD episode left me unable to eat anything. My weight dropped less than my high school weight. I was hospitalized and learned I had gastroparesis, a temporary paralysis of stomach function. For 2 ½ weeks I had a 12-hour intravenous, from nutrition bags – this is known as total parenteral nutrition (TPN). Other GVHD related issues that I faced were pneumonia, and GVHD of the lungs.

I have taken prednisone (a steroid) for nearly 12 years, to control GVHD. When I have a flare-up my prednisone dosage gets increased until it passes, then I resume my maintenance dosage. Prolonged prednisone use can be harmful and cause problems. Avascular necrosis (AVN), a deuteriation of joint tissue from loss of blood flow is one problem. I now have AVN, and have had both hips and partial shoulder replaced. Currently my eyes and mouth are the only places my GVHD fights me. An attempt to replace my prednisone with a safer medication is being evaluated. We have met my donor and talk occasionally. On my 10th anniversary of the transplant, we Skyped with her family.

Ron's Message to Those Dealing With MDS

To others facing MDS, learn as much as you can about the disease, the treatments, the human body and your body. Become familiar with your body and always pay attention. Pay attention to all labs and treatments and always speak up. Today I do as much as I can to help others with MDS, including working at marrow drives. In 2009, I worked 10 of these, including one my family hosted. That drive generated 150 registrants and saved one life!  Myy wife and have beeen married 36 years. We have two daughters, 32 and 29. In closing, always be as positive and upbeat as you can – this goes a long way. You are not alone, and don’t be overwhelmed by little things