In his own words: living with myelodysplastic syndrome
Neil is 69 years old and has had myelodysplastic syndrome (MDS) for the past six years. He lives in Maple Grove, MN, where he sold plastics products for 27 years before retirement.
What was your first sign that something was wrong? What symptoms did you experience?
I actually didn’t have any symptoms. I was diagnosed with MDS during a routine doctor’s check-up.
What was the diagnosis experience like?
The experience was not especially remarkable. First, I had blood drawn by my internist for routine analysis. Then after seeing the results, he sent me to the hematologist, which made me pretty uncomfortable. I underwent a bone marrow biopsy, confirming the diagnosis. There was definitely some initial fear when the implications were explained.
What was your initial and then longer-term reaction to the diagnosis?
At first I was shocked and afraid. But then as I learned more about what to expect by reading all of the educational material I could find on MDS, I became much more comfortable with my particular situation. I have returned to a fairly normal life.
How do you manage MDS?
Currently, I don’t receive any treatment for MDS. Since fatigue is a major issue, I mostly manage with plenty of rest.
I have blood tests every six weeks to detect any changes in my blood counts and to keep track of the trends. My red blood cell count and hemoglobin are low, but not low enough to require a blood transfusion. Overall, my blood counts are stable except for my platelets, which have been steadily declining. In March of 1997, they were 32,000. They have declined to as low as 6,000, and as of yesterday, were 10,000.
My low platelets are not causing any symptoms; therefore, my doctor and I agree I will avoid platelet transfusions as long as I can. Our reasoning is that with repeated platelet transfusions, they are no longer effective.
The treatment plan is based on the individual and there are many treatment options for MDS: Procrit, Epogen, Interleukin II, Antithymocytic Globulin (ATG), Thalidomide, 5-Azacytidine, Decitabine, Arsenic Trioxide, Prednisone, Decadron, stem cell transplant, bone marrow transplant, Topotecan, Melphalan, Mylotarg, and of course blood transfusions. None of the drugs except Procrit and Epogen are FDA approved for MDS treatment; they are only available through clinical trials. Most of them work on a relatively small percentage of patients and usually have temporary benefits. Most of them, such as Thalidomide, have nasty side effects that are typically worse than the disease. ATG is administered in a hospital so there is a staff on hand to deal with the reactions. A blood transfusion is often the primary treatment, though, since it can be an on-going treatment for most people.
Many MDS patients receive no treatment, as long as their red blood cell and hemoglobin counts are not below their "threshold.” The threshold seems to vary from person to person. Any time the hemoglobin dips below 10.0 there is cause for concern. When it hits 8.0, a transfusion is usually given. Incidentally, I think most HMOs will not pay for the transfusion if the hemoglobin is above 8.0—without a battle. I have a friend who would go to 5.7 before he got tired and needed a boost from a transfusion.
Did you have to make any lifestyle or dietary changes in response to MDS?
Because of fatigue, I drive very cautiously and avoid power tools. I haven’t changed my diet for MDS necessarily, but I follow a low-fat, limited carbohydrate diet since I have type 2 diabetes. I take a multivitamin, vitamin B6, vitamin C, and beta-carotene. I also try to get as much exercise as I can.
Did you seek any type of emotional support?
I was active in two support groups, but I cut back to one. The more I learned about the disease the easier it has been to deal with it. My wife and children were very confused about the future and at one point were very upset. As time went on, I was able to convince them I have a future, along with a good hematologist and a lot of faith. I think my situation is stable, at least for the present.
Does MDS have any impact on your family?
Yes. They are frightened and confused. They read information on the Internet and tend to retain the negative mortality facts. However, I don’t look sick, seem to get along well, although tend to tire a lot. If I go up the stairs too slowly, there’s a surge in their concern. But over the years, they have been able to put it in the background somewhat—till my counts take another dive.
What advice would you give to anyone living with MDS?
Find a hematologist experienced in treating MDS and develop a very sound relationship. Find all of the more recent books or articles on MDS and apply it to your particular case. Learn all you can about how the bone marrow creates cells. Learn all you can about blood cells and their normal ranges and how each type of cell affects the body. Set up a chart of red blood cell, hemoglobin, platelet, and white blood cell counts and watch for trends over time. Join a support group and actively participate.