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SLStrout
MemberDoes Agent Orange contain Benzene? That name has popped up a number of times as a suspected possible cause of MDS.
February 6, 2007 at 6:17 pm in reply to: platelet counts dropping – has the vidaza stopped working? #17049Memberjen06,
My husband’s platelets have fluctuated quite a bit since his diagnosis last August, fluctuating even before he started taking vidaza. They were as low as 11,000 in early December 06, prior to his second round of vidaza. After that round, they went up to as high as 81,000. Then dropped to 14,000 in early January 07, then went to 34,000. He finished his third round of vidaza two weeks ago, and we do not know what the results of that are yet. So, it’s a bit of a scary ride, but he’s feeling and doing fine.
MemberInteresting post from patti about cancer cure (newscientist.com)! Campbell, I don’t know about inheriting the disease – everything I’ve read (and I’m sure I haven’t read it all) says it’s not genetic/inherited, but who really knows…If your husband was around jets, was he around jet fuel (there’s the benzene connection)?
MemberAll I can say, Neil, is “wow.” What an informative and beautiful essay.
MemberHad a little time to go to your web site – looked nice! Thanks for sharing so many thoughts.
MemberThe National Marrow Donor Program has a good web site, http://www.marrow.org, in addition to those mentioned above. (Even if you’re not a candidate for a transplant, it’s a good site.) As well, the National Bone Marrow Transplant Link acts as a clearinghouse for lots of good organizations and web sites: http://www.nbmtlink.org. Best of luck.
MemberThanks for your comment. I had read that benzene can possibly trigger MDS, and that it is obtained chiefly from coal tar. Our hemotologist did not seem to know that. I believe I read it on the MDS-Foundation web site. Nevertheless, I would like to do whatever I can to help eradicate this dread disease and if providing info is one way, then great. Our doctors never asked us if we wanted to participate in any studies to determine origin of MDS. I wonder why not and I wonder if they exist. Keep up the hope!
MemberHello friends,
I have never posted to any forum before, so I’m not even sure what I’m doing. But I’m so glad I have found this group! My husband has MDS RAEB, Int.2, and was diagnosed with it 8/06. He’s been on Procrit (60,000) weekly, and is on his third round of Vidaza this month. He is a very young 62 and is potentially going to have a BMT in the coming months. Very scary to consider. City of Hope in Duarte has found a 10/10 match for him, but we don’t know if the donor has been contacted officially. I don’t really know what I’m expecting here at this forum, but wanted to get ourselves introduced. I look forward to any comments/experiences. Pls. let me know if I need to provide more info. Thanks, and best of luck to us all. -
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