The first indication that something was wrong came with a routine blood test. Lots of H's (high) and L's (low) dotted my CBC (complete blood count). My primary care provider said it probably was ‘nothing’, but I might want to follow up with a
hematologist
hematologist:
(hee-muh-TOL-uh-jist) A doctor who specializes in treating blood diseases and disorders of blood producing organs.
just to be sure.
I was thirty-nine, a husband and father of three girls. I was an avid runner who ran 10k races, half marathons and full marathons. I had a healthy diet, didn't drink or smoke. I wasn't supposed to be sick. I thought it was all a terrible mistake.
I was convinced the hematologist would have a simple answer for what was clearly a medical mix-up. I couldn't possibly be sick; I felt great.
Unfortunately, the hematologist didn't have good news. That was when I was introduced to those three letters that have forever changed my life ... MDS. He told me what it meant, that we caught it early and that I was much younger than most people who have it. He told me I had a serious illness, that it was progressive and the only cure was a bone marrow transplant bone marrow transplant: A bone marrow transplant (BMT) is also called a stem cell transplant (SCT) or hematopoietic stem cell transplant (HSCT).The procedure replaces unhealthy blood-forming stem cells with healthy ones and offers some patients the possibility of a cure. But for many patients, a BMT is not an option due… .
Over the next few years, my new reality became hematology appointments, bone marrow bone marrow: The soft, spongy tissue inside most bones. Blood cells are formed in the bone marrow. biopsies, CBCs, transfusions, chemotherapy chemotherapy: (kee-moe-THER-uh-pee) The use of medicines that kill cells (cytotoxic agents). People with high-risk or intermediate-2 risk myelodysplastic syndrome (MDS) may be given chemotherapy to kill bone marrow cells that have an abnormal size, shape, or look. Chemotherapy hurts healthy cells along with… and a clinical trial clinical trial: A type of research study that tests how a drug, medical device, or treatment approach works in people. There are several types of clinical trials. Treatment trials test new treatment options. Diagnostic trials test new ways to diagnose a disease. Screening trials test the best way to detect a… became my new reality.
For now, I'm responding to an experimental drug. I try not to think about what comes next. What happens when this miracle drug stops being miraculous? When my body stops responding to it, what then? More transfusions? More chemotherapy?
A bone marrow transplant?
When you have a life-threatening disease, you consume everything you can about that disease. When I heard about PACCT+ via the AAMDSIF newsletter, I was in the middle of a clinical trial and I thought I might be able to shed some light on the clinical trial process from a patient's perspective. I feel those developing clinical trials clinical trials: Clinical research is at the heart of all medical advances, identifying new ways to prevent, detect or treat disease. If you have a bone marrow failure disease, you may want to consider taking part in a clinical trial, also called a research study. Understanding Clinical Trials Clinical… would benefit greatly from patient input. I can’t imagine developing a clinical trial without it.
The PACCT+ orientation was something special. I had the pleasure of meeting others who have been touched by MDS. Some were at the same place on their journey, while others have had transplants and have come out the other side -- not unscathed, but alive. I saw hope in their eyes. I heard them speaking about their diseases in the past tense. For the first time I had hope that I would one day say, ‘I had MDS’.
As an MDS patient and PACCT+ participant, I hope to use my clinical trial experience to help others develop more effective clinical trials. I feel patient input is going to change the face of clinical trials as well as for other diseases. This is just the beginning and I’m thrilled to be a part of it.