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Old Mon Jan 26, 2015, 01:22 PM
kayakerSN kayakerSN is offline
Join Date: Aug 2014
Location: Monroeville, PA
Posts: 2
Anyone in Pittsburgh?

Hi. I am not new to MDS, I have had it for over 10 years now. I think I am cruising into stage 3, but not certain of that yet. I will be the big 50 this year, and am wondering what is in store for me for the next 10 years or so. I love to go kayaking, and hope to do more of it this year, God willing.

My doctor is at West Penn hospital, just wondered if there is anyone else on here who goes to the same hospital. Just recently had a blood transfusion and my numbers, hemoglobin, took a nosedive after only 3 weeks. I am a little worried. Any advice? Please respond if you can.
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Old Mon Jan 26, 2015, 06:09 PM
bailie bailie is offline
Join Date: Dec 2013
Location: McMinnville,OR
Posts: 825
I would recommend being proactive at this stage. I went from zero to RAEB-2 in a very short time. Start immediately thinking of your long term (and short term) plans. Be careful not to "watch and wait" too long. If a stem cell transplant is in your future, start planning. It is very important to have the SCT while in good health. I have never had symptoms of MDS and was playing (walking the 6-mile course) right up to a week before my SCT. Don't let "feeling good" interfere with your plan.

Learn as much as you can. There are many experiences represented on this forum and the more information you can absorb, the better. It will make a difference in your life. Try to find doctors with considerable experience with MDS.
age 70, dx RAEB-2 on 11-26-2013 w/11% blasts. 8 cycles Vidaza 3w/Revlimid. SCT 8/15/2014, relapsed@Day+210 (AML). Now(SCT-Day+1005). Prepping w/ 10 days Dacogen for DLI on 6/9/2017.
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Old Tue Jan 27, 2015, 12:11 PM
Neil Cuadra Neil Cuadra is offline
Join Date: Jul 2006
Location: Los Angeles, California
Posts: 2,503
You might find other patients in Pittsburgh through the Pittsburgh Community of Hope Support Group.

Their next meeting is Tuesday February 10.
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