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daughter of 60-year old aml patient

lorakeenan
Posts: 6
Joined: Feb 2003

hi I accidentally deleted the 4 replies to my original message. I was able to recover them by clicking back and copying and pasting. I want to keep this conversation going...here are the messages:
Lorakeenan 2-16-03 Hello, I am new here and looking for a friend. My mom was diagnosed with AML m5 on Jan 3 2003. She finished induction and is in remission. She is now preparing to begin consolidation chemo treatments. They said that she can be an out patient for these treatments because she tolerated induction so well in the hospital. She doesn't have any living siblings. I am looking to communicate with someone who has been through this. Thanks!

lorakeenan
Posts: 6
Joined: Feb 2003

Dickl 2-19-03 My son had aml 7 years ago at age 7.He underwent chemo and did not go into remission until the the last biopsy after his final course. So that seems to be good news for your mom. It's also very different for kids than adults. Kids generally tolerate the toxic effects better. So that too seems like a positive thing for your mom. My son matched his mother and then had a bone marrow transplant which was very rough but "succeced". I know a few kids from our hospital days that had aml and had no family marrow matches and after achieving remission have done fine these last 7 years. Not to scare you or your mom but educate yourselves about late term effects of chemo and/or radiation. These can take 3-5 years to present themselves. It's a blessing to be alive after such a horrible disease but good attitude and keeping well educated about the disease and treatments are of great importance! There's a wondreful book written by Wende Hobbe about late term effects on adults and children. I forget the exact title but if your interested contactme and I'll get it to you. Ms. Hobbe is nurse at
Philadelphia's Children's Hospital and works in their late term effects clinic. Your mom must be a fighter and tell her she's not alone and this site provides wondreful support for people who share experiences from very rare diseases. Feel free to contact me here or at my e-mail address at ww3461@dragonbbs.com

lorakeenan
Posts: 6
Joined: Feb 2003

Lorakeenan 2-21-03 thanks for your reply! It looks like my mom will be admitted to the hospital after all for the consolidation treatments because they have decided to do them twice a day and she cannot do that as an outpatient. Actually I feel a little relieved about that because I know that she will be monitored more carefully than she would be at home. They are talking about harvesting some of her own marrow (autologous?)in case they need it down the road. I have heard that this technique hasn't had as good of a success rate as the exact match donor kind. I guess I am getting a little ahead of myself. I have to learn to just take one day at a time....:) I would be interested in hearing from anyone who has been cured from just chemo alone and/or an autologous transplant. thanks!

lorakeenan
Posts: 6
Joined: Feb 2003

2-25-03 This is dickl again. My son was cured with an autologous transplant from his mom in 1996, he was 8 at the time. I knew two other children with AML at the hospital that had no matches and I think survive to this day. Educate yourself about treatments and transplants as soon as possible. We have a web page in this site with no photo, but he is a healthy looking 14 year old young man now. There have been many late term effects of the chemo and transplant, but heis alive and has much to be thankful for. Contact me antytime, I check this site every day or two.

GingerW
Posts: 4
Joined: Mar 2003

Hi! I just turned 61 on 3/11/03 and I was dignosed with ALM 11/15/02. I am waiting for a transplant from an unrelated donor, they've found 4 matches, so my story is not exactly the same as your Mom's but I think close enough. I did not go into remission the first or second chemo round and I was sent to the University of Md. to participate in a clinical trial. While preparing for this I was found to be in remission and have been waiting for the transplant at home. While I was in Walter Reed about 5 people had transplants using their own cells and all did remarkley well. We keep in touch, 70 days in the hospital made them family, and they are back at work etc. It's great that your Mom is in remission, they say we older people don't have the strength but I personally think they need to take a better look at what constitutes "older people" and not link age so closley to it. Your Mom sounds like a real fighter. You may want to read the book Adult Leukemia which tells about all kinds of leukemia but allows you to focus on the one you'r interested in. Tell your Mom to keep up the great work and maintain a positive attitude, it makes all the difference going through this horrible experience. Also contact the Leukemia and Lymphoma Society at 800-955-4lsa or at their web site, www.leukemia-lymphoma.org. They offer all kinds of help and support. Good luck.

GingerW
Posts: 4
Joined: Mar 2003

Hi! I just turned 61 on 3/11/03 and I was dignosed with ALM 11/15/02. I am waiting for a transplant from an unrelated donor, they've found 4 matches, so my story is not exactly the same as your Mom's but I think close enough. I did not go into remission the first or second chemo round and I was sent to the University of Md. to participate in a clinical trial. While preparing for this I was found to be in remission and have been waiting for the transplant at home. While I was in Walter Reed about 5 people had transplants using their own cells and all did remarkley well. We keep in touch, 70 days in the hospital made them family, and they are back at work etc. It's great that your Mom is in remission, they say we older people don't have the strength but I personally think they need to take a better look at what constitutes "older people" and not link age so closley to it. Your Mom sounds like a real fighter. You may want to read the book Adult Leukemia which tells about all kinds of leukemia but allows you to focus on the one you'r interested in. Tell your Mom to keep up the great work and maintain a positive attitude, it makes all the difference going through this horrible experience. Also contact the Leukemia and Lymphoma Society at 800-955-4lsa or at their web site, www.leukemia-lymphoma.org. They offer all kinds of help and support. Good luck.

ritaude
Posts: 7
Joined: Mar 2003

My father was diagnosed with AML (M6) the day after Christmas. He underwent 2 rounds of induction chemotherapy and is in remission. Monday we started the consolidation chemo. I am wondering if he will get as sick from this as he did the induction?? He is also doing it in outpatient. My father is 66 years old, so the doctors say he is too old to be considered for bone marrow or stem cell transplantation. What have they said about this with your mother?

lorakeenan
Posts: 6
Joined: Feb 2003

Hi, They don't seem to be talking about any kind of transplant with my mom. They mentioned one time about taking her own marrow after the consolidation treatments are done. She has nausea and she gets pretty weak from the consolidation treatments. They seem to be a little easier than induction, but not much.

ritaude
Posts: 7
Joined: Mar 2003

Did the doctors allow her blood counts to go back up between the consolidation treatments? How long did it take? My father had to go through 2 rounds of induction...the second one put him in the hospital for 12 days with an infection. It has been 4 weeks since he started the first round of consolidation and his counts still aren't high enough for him to start another round. He doesn't have as much nausea with the consolidation, but is still weak and tires easily. His hair is starting to grow back though and his spirits have picked up. The statistics that I read related to survival rates with older AML patients are pretty grim. Have you heard from any other older patients who have survived?

CathyNY
Posts: 8
Joined: Mar 2003

Hi Lora,

My name is Cathy Greene, and I live in Newburgh, NY. I was diagnosed with AML on 5/20/00, had a bone-marrow transplant on 3/6/01, and am doing very well. I got to meet my donor, Pat, who lives in Superior, WI, last October at the National Convention of the Marrow Donor Program in Minneapolis, MN. We were the stars of the weekend! She is a wonderful woman, and my husband and I will travel to wisconsin next month to stay with her and her husband.

Please let me know how your mom is doing; I am very interested.

Cathy

lorakeenan
Posts: 6
Joined: Feb 2003

Hi Cathy, thanks for your success story. Did you relapse or did you choose to have a bmt while you were in remisson? My mom has completed her 2nd round of consolidation chemo. 2 more to go. she has some decent days and some rough days. I just want her to feel normal again.

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