BMT Survivor story

My name is Angelia L. and I have Acute Myeloid Leukemia. I was diagnosed Oct.31, 2001. I am facing a BMT and would like to talk to someone who has been through a BMT. I would like to ask a few questions.

My name is Michael H. I am in remission after a stem cell transplant at Oregon Health Sciences University. My transplant was in 9/1998. I am doing well and would be glad to share my experiences.

I have a 43 year old son who has AML Leukemia. He was diagnosed in July 2002 and received a second stem cell transplant on May 21. He is having trouble all the time. He is down to about 29 days off the 100 days and he and his wife are having trouble about the emotional part of this. How do you handle this? Can anyone help me with advice? Michael I would like to know how you are and about your experiences. Thanks Red Velvet

Hi Linda, My name is Mike I was a caregiver for my wife Dawn .She passed away due to chronic graft versus host 01/05/05.I know she would want me to reply to you .Some people survive and do well with very little graft versus host she did not get anything serious for a couple of years but the past year it just kept getting worse she developed a lung infection and pneanomia and she died of respetory failure .You need to try everything possible before a transplant check with your current doctor and get a second opionion it doesn't hurt.If they still say transplant I guess even after seeing my wife go through hell I would do my best what choice do we have in everyday life do the best we can ,my wife did through everything and remains a tremendous inspiration in everyday life.Just ask the doctors what they are doing to prevent the graft versus host before transplant and after and as much as you hate the meds you need to take for fighting this listen they are anti rejection meds and will keep things under control hopefully.You do need some graft versus host it keeps the leukemia away and small doses are not hard to deal with compared to worser cases ,just ask your Doctor all you can about this.I am working now but if you have more questions I would be happy to answer what I could but everybody is different just keep your doctor informed of any changes and get a second opinion on the big stuff.Also pubmed on the internet tell them you are a medical student they present the facts its for Doctors and medical students ,If you are looking for a second opinion on anything Doc Miller in boston was my wifes Doctor I would have him as my doctor if anything terrible like that happened to me .1-617-667-1007 evy is his receptionist tell them mike ellis sent you.

Mike, I am so sorry for your loss. I was diagnosed with AML in Feb 03, had my induction in Burlington , Vt and I had a BMT on 5/22/03 with Dr. Miller at NEMC just before he moved on to Beth Israel. I guess I had a pretty easy time of it and have been back to work and a normal life since 12/03. My brother was my donor and I had some GVH early on and a little rash on occasion, but nothing major. How long did your wife go before her complications set in? This is my first communication on one of these sites. I just popped in to see if I could offer hope to someone out there, but your posting affected me.

Hi Betsy, Thank you for your condolences. My wife survived three years a little more, GVHD started setting in the chronic stage in her last year and just kept getting worse and worse. She did not always go up on her prednizone as quickly as she should of. She hated taking pills for anything but just listen to Doc Miller on that stuff. If your graft versus host flares make sure you communicate with him and tell him when things get worse. The prednizone seemed to stop working by the time she was finally agreeing to go up on it. Pentostatin which is a form of chemo started to work but she got a lung infection and pnemonia started things were getting better but graft versus host stiffened her lungs and they wouldn't expand like mine and yours. Doc Miller said she could come home and live in a nursing home for the rest of her life on the respirator but she was so tough and special she would not have any of that. She didn't want to burden people with taking care of her even though we certainly would have. Doc Miller didn't start her on the pentostain because of the risk of infection again it lowers your counts, but I told Doc Miller any future patients with her problem don't wait so long. If she was going to die of an infection she would not have suffered as long. But the Pentostain was working we thought things were going in the right direction. Don't judge yourself by her - everybody is different and she reacted to all medicines the opposite of anyone else, pardon my spelling here. Benedyl wound her up it put me to sleep all kinds of things her body reacted differently to. Tell Doc Miller I'm coming down to your next appointment to make sure he is on top of things! Just kidding he is a great guy I almost miss everybody down there, the nurses at Beth Israel are better than any of the 5 hospitals my wife and I dealt with. Don't hesitate to get in touch if you are going through something different and need to talk. Also go on to pub med on the internet and sign up as a medical student you will get the straight scoop that Doc Miller used to try and protect us from. Best of Luck stay positive and keep after Doc Miller. Your next appointment tell everyone I said hello and my family is doing okay. We promised my wife we would make her proud and do our best everyday.

Not an easy thing. One day at a time when you get down and try to count your blessings. I did not go through this my wife did but we had many times where I just held her and let her cry and tell me how much she hated this and didn't believe in it. I would try to give her reasons why she did it. For our children was her reason, but emotions are part of it and you must be as strong as possible and motivate yourself with exercise as much as possible and live your life as much as you can. Do all that and you can stay on your doctors and communicate everything to them. Get his e-mail if you are experiencing things make them find out whats going on. I wish I had better advice but this is not easy but it makes me furious to have people dealing with this. Noone deserves it, not your worst enemy.

Hi Angelia, are you the lady I spoke with another time, is your Doctor Doc Miller in Boston? If so hope all is going well, and I would be happy to answer anymore questions you might have to the best of my ability. How's the graft versus host?

My son, who is 25, got AML in Aug. 2003, had a bone marrow transplant in Dec. 03 and has since relapsed. I am interested to know about your son's second bone marrow transplant and the success rate you were given for a second transplant. I have heard that the survival rates for a second transplant are very small. Any information you can provide would be of great help.

Hi Mike, I would like to first say that I am very sorry for the loss of your wife. My daughter is supposed to go through a BMT around June 2006. She was diagnosed with Chronic Myeloid Leukemia in Sept. 2005. She is only 10 yrs. old and I have no other children. Therefore, she will she will have an URD. I am terrified and not sure what to do. She was on 400mg of GLeevic, but has recently bumped up to 600mg. I feel if she doesn't get the BMT, she will suffer the rest of her life. She has terrible leg and stomach cramps, besides feeling tired. If she does get the BMT, what awaits her?? There is a chance she can get worse, or worst, die. I can't seem to get this out of my mind. I keep thinking of the pain that awaits her and feel helpless. I don't know what to do, I just don't want to lose my litle girl. Cindy