Need totalk to BMT survivors

LMedwrds
LMedwrds Member Posts: 1
edited March 2014 in Leukemia #1
Hi! My name is Llanda and I am 28 years old, I was diagnosed with AML in december and ther is a possibility I will need a BMT, I'd really like to hear from people who have experienced a BMT to help me make a well informed decision, Thanks

Comments

  • dickl
    dickl Member Posts: 39
    #2
    Llanda,
    My son,who is now 15, is 7 year survivor of aml and a transplant from his mom. Things have
    changed in the last 7 years in the world of
    treatment and bmt's.I would be happy to try to ansewer any questions but your doctors are better equipped to give you up to date info. Every case can be different and there are many sub-catagories of aml that have a bearing on survival
    rate. Pediatric survival rates are usually different than adults with the same disease and same treatments. I urge you to educate yourself through any means possible ( the internet helped us). Get your treatment at a major cancer treatment center for a disease as serious as aml. We live in southern Ohio and got our bmt at Children's in Cincinnati. Adults often go to The James Cancer Center at Ohio State University for treatment including bmt . I would get phone #'s off web sites and call oncologists and ask about their hospitals . I called St. Jude's and spoke to the diector of their bmt program who told me the program in Cincy was world class and would serve us well since it was closer to home. A bmt will require a minimum of 4-8 weeks of hospitalization and is a serious undertaking. But it can lead to being cured. My son is cured of aml,has had normal blood cells since going into remission after 3 rounds of treatment. The docs prefer to have a patient in remission and strong as possible before doing a bmt. Where do you live,do you have friends or family to help look
    after you?

    dickl

    D
  • LeukeMiNow
    LeukeMiNow Member Posts: 2
    #3
    Hello, I am Post Transplant 7years! My response to you is alittle different then what Dicks' was.
    I had just turned 31, and a month later, also on a December was told I had A.L.L. and that my survival rate was not good. Although I was in remission less than 30 days later, I was told that I needed a BMT to keep this from recurring. I
    can talk to you about my faith in God,prayer and how wonderful my family and friends were. But what you want to know is about the BMT itself! So, here it goes....
    Preparing for my BMT wasn't so bad I got my first set of tattoes for the series of full body radiation I was to recieve for 3days, 2xs a day. After about a week I noticed I had blisters on the bottom of my feet, then my feet and hands started to peel. I could have robbed a bank. I didn't have finger prints, and what hair was growing back, fell out again! I was a real babe then =) LOL
    Then all hell broke loose. It started like a sore throat, then the horrendous pain began. Everytime I swallowed it was as if swallowing razor blades. This lasted a long 3weeks.
    Then it all started to get better, with the strong meds and all..
    The day of my BMT was uneventful. My family was there, I am the youngest of ten kids. And my donor, my oldest sister, was in the room next to mine. They took her into surgery, and 45 minutes later they brought up my new bone marrow in a small cooler, still warm from being extracted. The bag filled with 500cc's of what once belonged to my sister, was hung to my IV pole and hooked up to me via my Hickman Catheter ports and I was in business..
    My body did not reject mys sisters marrow, I was very lucky. She was a perfect match for me all 6 antigens matched! even our blood type was the same.
    You know Llanda, at the time of all my throat pain I wished I had not done the BMT. But I know I did the right thing in choosing to do so. In the long run? I breathe each day! And praise Gods work; my sister, Dr. K and my nurses, I have made great friends and still keep in touch with them.
    It was well worth the pain I went through, and there WAS pain. But as I sit here typing this out to you, I hear the birds outside chirping and cars driving by. I may not have had this chance if I had said no....
    I hope this helped you, if you have any questions please feel free to contact me..

    Zenaida
  • LeukeMiNow
    LeukeMiNow Member Posts: 2
    #4
    Sorry Llanda, forgot to send you my email........
    Zenaida

    Xanadu257@aol.com
  • tiggertoo
    tiggertoo Member Posts: 25
    #5
    LeukeMiNow said:

    Sorry Llanda, forgot to send you my email........
    Zenaida

    Xanadu257@aol.com

    What great info! I am in remission from ALL and am getting BMT next month too. One of my sisters is a match on all 6 antigens, but not blood type, I know to expect host vs. graft dis. I have been told that I may not have to have the total body radiation since I am still in remission. I hope not. I am looking forward to another summer of no shaving!!! :) I am going to have my husband shave my head before I am admitted. I am ready to go in and get it done...ready to get in with life.
  • mr8cl
    mr8cl Member Posts: 9
    #6
    Hi Linda! I'm also an AML survivor. I did not have a BMT, but it's lingering over my head. I know extensive information about stats, etc. What subtype of AML do you have? Please feel free to contact me if you would like further help, support.....ksbrown1@aep.com
  • CathyNY
    CathyNY Member Posts: 8
    #7
    Hi!

    Don't be afraid. They are doing wonderful things now; more success every day. I had my BMT from an unrelated donor 3/6/01. Am doing great! I have travelled twice to WI to be with her since October, and we are wonderful friends. Do you have a donor yet? Please e-mail me.

    Cathy, NY
  • kdaly
    kdaly Member Posts: 1
    #8
    Llanda,

    Glad to meet you, and I hope you are doing well today. I had a BMT ten years ago for AML, and am cured. My brother was a 6-antigen match. The BMT was a last ditch effort, as I had a relapse after first treatment, and then could not achieve a second remission prior to the BMT. In addition to hi-dose chemo, I had a radioactive isotope (rather than total body radiation).

    I don't know if this BMT is mandatory for you or not, it was for me. So my choice was easy. If I wanted to live I had to have the BMT. If I didn't want to live, well, you know the answer to that.

    Keep in mind that my experiences were based on the technology at the time. I am sure they are much better now.

    Yes, the month+ in the hospital was rough at times and boring at times. The mouth sores were tough.

    As far as to how I chose where to go for treatment, I relapsed when I was living in Las Vegas, and chose to move in with my parents in the NYC area, after I found out about the usual recovery period. I went to Memorial Sloan Kettering Cancer Center in NYC. I could not have done it (recovery) alone (I was, and am single). Best decision I made. After initial release from the hospital, I was with my parents for about 7 more months.

    If I can help with any other information, please let me know.

    Kevin Daly
    kdaly@benchmarkassociates.com

Discussion Boards