Comments on: Personal Perspective: “I Have MDS.” http://www.mdsbeacon.com/news/2009/06/09/patient-interview-%e2%80%9ci-have-mds%e2%80%9d/ The MDS Beacon provides extensive, up-to-date news and information about myelodysplastic syndromes. Its mission is to be the leading Internet resource for MDS patients, their families, and others interested in myelodysplastic syndromes. Tue, 07 Feb 2012 18:33:15 +0000 hourly 1 By: Brewer http://www.mdsbeacon.com/news/2009/06/09/patient-interview-%e2%80%9ci-have-mds%e2%80%9d/comment-page-1/#comment-21849 Brewer Fri, 27 Jan 2012 17:24:54 +0000 http://www.mdsbeacon.com/?p=7467#comment-21849 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. 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.

]]> By: Jacki http://www.mdsbeacon.com/news/2009/06/09/patient-interview-%e2%80%9ci-have-mds%e2%80%9d/comment-page-1/#comment-21703 Jacki Fri, 30 Dec 2011 21:21:03 +0000 http://www.mdsbeacon.com/?p=7467#comment-21703 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 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.

]]> By: Gouthami http://www.mdsbeacon.com/news/2009/06/09/patient-interview-%e2%80%9ci-have-mds%e2%80%9d/comment-page-1/#comment-12490 Gouthami Sun, 05 Sep 2010 11:34:03 +0000 http://www.mdsbeacon.com/?p=7467#comment-12490 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 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.

]]> By: Alan http://www.mdsbeacon.com/news/2009/06/09/patient-interview-%e2%80%9ci-have-mds%e2%80%9d/comment-page-1/#comment-11397 Alan Sat, 21 Aug 2010 17:27:53 +0000 http://www.mdsbeacon.com/?p=7467#comment-11397 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. 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.

]]> By: Linda Russell http://www.mdsbeacon.com/news/2009/06/09/patient-interview-%e2%80%9ci-have-mds%e2%80%9d/comment-page-1/#comment-616 Linda Russell Mon, 19 Oct 2009 22:30:49 +0000 http://www.mdsbeacon.com/?p=7467#comment-616 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 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

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