Personal Perspective: “I Have MDS.”
Published: Jun 9, 2009 10:11 am
Roger Contreras was a healthy, hardworking Texan construction worker when walking up a flight of stairs and carrying bricks started to become difficult. His first hospital visit in decades and multiple tests later, doctors diagnosed him with myelodysplastic syndrome (MDS) in July 2008.
Contreras came from a family with a clean medical history, free of cancer and high blood pressure. It came as a surprise, then, that a rare disease like MDS would choose Roger, who, at the time, “was building hospitals, not going to them.” Yet within the year of his diagnosis, his Web site, IHaveMDS.com, and its corresponding blog have reached out to support many other MDS patients, friends, and family.
In an interview with The MDS Beacon, he tells of how he wrote online journal entries as he began months of hospital visits and blood transfusions. He was lonely, without information, and in need of support.
“There was no one to talk to, there were no answers – I couldn’t find any answers,” says Contreras.
His blog served as an outlet for the thoughts, emotions, and daily lifestyle of a man decades younger than the average MDS patient. At the same time, he gathered information for his own reference and decided to share it with the public on his Web site. His online sources eventually attracted others who were scouring the Web for MDS, all confused by the foreign medical terms and looking to hear it firsthand from others going through it. Comments left by subscribers illustrate how encouraging his blogging honesty has been.
Contreras’ own support system has been his family, who he says has been there from the beginning. In March 2009 when he was eligible for a bone marrow transplant, the only curative treatment for MDS currently available, his sister volunteered to be his donor. In addition, his family was able to sit in the hospital room with him during the procedure.
Although he has a catheter in his chest, no hair due to chemotherapy, and still needs daily transfusions to ensure a healthy blood count and no neurological complications, Roger Contreras is well on his way to recovery. His voice was strong, matter-of-fact, yet urgent during the interview as he spoke of how the transplant changed the focus of his blog and Web site.
“Up until transplant time, it was all about me and what I was going through,” remembers Contreras. “But now it’s more about trying to get information out, trying to reach people, and looking for donors.”
His main concern is awareness. Not only had he never heard of MDS before his diagnosis, but blood donation was also a foreign concept. He sees importance in getting more minorities involved because a transplant becomes much more difficult and time-consuming when the availability of matching donors is limited. Contreras wants to reach out to communities, especially to men like himself, who would not hesitate to donate if they knew about its need or importance in saving lives. He has already organized a local blood drive for this October and is considering coordinating a July event as well.
His Web site and blog are not only records of his MDS journey, but also forums to help others. There are requests for prayers, blood donations, and support for Tami, a 44-year-old mother diagnosed with MDS, and Grant, a three-year-old boy recently diagnosed with acute lymphoblastic leukemia.
Contreras knows how easy it is to get blind-sided and lost by all the medical terms when a disease with a name like “myelodysplastic syndrome” comes knocking. However, as a fighting survivor, he wants to give hope to anybody who will be following in his footsteps.
His words are comforting and truthful: “You’re not alone; there are other people out there. The more knowledge you have, the less fear you’ll have going into it. Fear of the unknown is the greatest thing. The more answers you have, the better it is.”
If you are interested in sharing your myelodysplastic syndromes story, please email us at . We would be happy to hear from MDS patients, caregivers, and health care providers.
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My husband, Dennis, was diagnosed with MDS in February. He’s been on Revlimid since then and he was taken off of it due to reactions and then put back on it. They found that the Revlimid wasn’t really helping him but it was keeping his levels steady. They took him off the last time when his hemoglobin dropped to 7.5. He had his first blood transfusion on 10/10/09. Today was his first treatment with Vidaza. He had a port put in his check last Thursday. We’ll see how that goes. Today he’s feeling fine. Did your doctor give you any explanation as to how you contracted MDS? It doesn’t make any sense to me. My husband never worked around asbestos. No one in his family ever had anything like this. He has shortness of breath all the time.
God bless you and I hope you continue to improve.
Linda
Benzene exposure can cause some forms. My mother has a form called 5q deletion. God Bless al of you who have this or any other life altering condition. She has done well the past year but now her platelets are low she has had to get some several times and her level has not increased. Has anyone else been faced with that and how did it turn out.
Hi, my father has been diagnosed with MDS monosomy 7. They are trying REvilimid – but he is not able to handle it – so in the last eight weeks he has only managed to take it 3 weeks. Would anyone like to share how this progresses? While I hate to see my 72 year old father like this, I would like to help him as much as possible to handle this condition. So if we could look ahead and predict the course, it would be useful.
Thank you.
Hi my Dad is 70 yrs old and he has been diagnosed with MDS & 5q-. He was told that Vidaza is the only route to go. We know nothing. Nobody has ever had cancer in our family. Well my grandfather did but he was not blood related. My Dad is scared and nervous and has no answers. He took one round of Vidaza and his numbers went down so far he ended up in the hospital and is back weekly for transfusions and platelets. ALL his numbers are LOW ALWAYS. I think its because that’s what happens with the shots. The Vidaza kills off everything good and bad. Then your body hopefully builds up the good again. The doctor just says “ya basically.” I came across this website and reading your comments helps a bit.
Hi Jackie:
My Mom was diagnosed with RAEB2 in early April 2011 at 95. Her numbers were sinking quickly and the doctors got her on Vidaza right away. The first round of Vidaza almost killed her and she was getting red cells every 6 days, platelets every 4 days, and she was severely neutropenic. She got pneumonia and spent 12 days in the hospital and then three weeks in rehab. They moved the second round out one week and started again at half the dose. Six weeks after the start of Vidaza her numbers suddenly began to come around and she hasn’t had a transfusion since May. She has continued to do extremely well on 1/2 the normal Vidaza dose every four weeks. This week her platelets and WBC started to tank, but further study showed it was a treatment effect and they’ve now once again stretched out the Vidaza – this round will be six weeks and after that we will go to either a 5 or 6 week rotation. Her numbers are on the way back up and her disease has shown no progression. It’s like a miracle how well Vidaza has worked for her, but those first few weeks of treatment were horrifying. I know that one day it will stop working, but she is almost 96 now and has had a great quality of life since the Vidaza kicked in. Of course, it won’t work for everyone, but I think sometimes it’s nice to hear that sometimes it DOES work.
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