Information Please

[George]

I'm a 74 year old Canadian who was diagnosed with MDS -U in the spring of 2004. My very active life was basically unchanged until my first transfusion on Sept 15/06, the next one Nov 24 and the most recent Jan 6. Each transfusion consists of two bags. I'm able to lead a very active life style, (I was running marathons at 70) with a very brisk 5 to 8 km walk each day including some hills until the hemoglobin falls below 9. At that point my walks are curtailed as the angina gets too severe.
I'm getting conflicting information on the prognosis of the disease and am appealing to your group for some guidance.

1. at the rate of one transfusion a month how long can one receive them?
2. when that wall is reached are there alternative treatments or is it the end of the game?
3. I want to get a second medical opinion and would appreciate any suggestion as to the best place to go. My current thought is the Mayo clinic in Phoenix as we have friends there and easy direct flights from
Calgary

I would deeply appreciate any information anyone can pass on from their experience.

Best Regards
George Scott

[Ruth Cuadra]

Dear George,

Welcome to Marrowforums. It's amazing that you have the energy to keep up your walking regimen despite the fact that you now seem to require transfusions. As you probably know, MDS is a disease that affects everyone differently. While there is currently no cure for MDS other than bone marrow/stem cell transplant, great strides have been made in developing drugs that can mitigate the progress of the disease. With the advent of Vidaza, Revlimid, Dacogen, and a few others, there are now a number of options for patients who need more than supportive care (i.e., transfusions).

There is really no limit on the number of transfusions you can receive. Some people are transfused more than once a month for years and years (if any of those patients are reading this forum, I hope they will chime in!). The long-term concern with transfusions is the build up of iron that the body cannot process. Iron overload, which can occur after as few as 20 transfusions (again, everyone is different), can require separate treatment to prevent organ damage from occurring.

It's a good idea to seek a second or even third and fourth opinions about your condition and possible treatments. This site has a list of U.S. Treatment Centers by State to help you identify some potential choices. Among the best of the best on the West Coast are Fred Hutchinson (Seattle, WA), Stanford (Palo Alto, CA), and City of Hope (Duarte, CA). The Mayo Clinic in Phoenix is another good choice.

Please post your questions as they come up. You'll find a wealth of information and support comes from our members.

Regards,
Ruth Cuadra

[seniorrico]

I found MD Anderson Houston, Texas to be excellent

[seniorrico]

Dacogen is working for me so far. HMG now 13-13.9,