Wanting REAL info on AML....

1 minute read time.

Hello! I am new to this site and am looking information on AML. Someone I know has recently been Diagnosed with AML. She is a 38 year old women and has always seemed to be the sickly type (colds, flu etc..) Well since the beginning of Summer 09 she really seemed to go down hill (more colds/flus) on 9/10/09 while she was at home she passed out, an ambulance was called took her to the hospital Emergency Room and was diagnosed with AML at the time of diagnosis she had a hemoglobin level of 3.9. She received 8+ transfusions and started Induction Chemotherapy on 9/12/09. She has experienced EVERY side effect possible. Yesterday she was released from the hospital and will have to be hooked up to an IV and be under the care of a Home Care nurse. I was wondering if anyone else has had to be under the care of a nurse while at home and had to have IV's while at home. I was also wondering if going into this with such a Low hemoglobin level is that a bad sign? Does that mean that there were a lot of leukemia cells? Any help you could provide would be greatly appreciated..... I wanna hear the REAL stories of folks dealing with AML. Thanks in Advance :)

Anonymous
  • FormerMember
    FormerMember

    Hi there - well for once I can help!  I was diagnosed June 2009 with AML (57 years old) - only symptom was feeling faint  and racing heart after being out on my bike.  My haemoglobin was 8 so I can only imagine how ill  your friend must have felt.  Some of my blood tests showed that I would not respond well to chemotherapy with only a very small chance of remission so I declined to have it. However if I had gone for it I was told I would receive the treatment in hospital and only get home for three weeks in between cycles as having AML makes you very open to infection so I am surprised they have let her home.  If she is receiiiving IV then she would have to have a nurse in attendance.

    I get a blood trans around every three to four weeks and platelets from time to time.  Surprisingly my bloods have remained stable and I am living an almost normal life although energy levels are not as good as they were.

    Her having such a low haem would probably not make things worse as she received a blood trans.  The worst enemy is the white cells either if they are too high - they take over and if too low - infections occur.

    Do keep me posted as AML is quite unusual. Hope this has been helpful to you.

    All the best

    Christine

  • FormerMember
    FormerMember

    I agree with Christine it is very unusual to have IV at home,  Bert was only allowed home for a week between cycles of chemo,  the lowest hes Hb has beeen was 7 so you friend must have been so tired it's no wonder she passed out I have sent you a PM if you want to talk.

    Teri

  • FormerMember
    FormerMember

    Thanks guys for you replys to my post! It is hard to find REAL LIFE information out there, no one wants to tell you the REAL DEAL, it's the purple elephant in the room that everyone sees but says nothing about.

    As far as my friend goes I personally think that she had been sick for some time. I have heard that how you go into the disease can be an indication of how well that you might do with your disease. like say you were a regular exerciser heathly eater as compared to someone who was lazy and ate fast food does anyone know if this is true or not?? My friend she has never been physically or emotionally or mentally strong so I was wondering how that will be playing a role in this.

    This women suffered from every possible side effect from the Chemotherapy treatments and severly too I might add, she even got sores on her eye lids has anyone had this happen to them also? I heard that it could be from receving really high dose's of one of the drugs that they use in the treatment process (sorry I cannot think of the name of it rigth now). And another thing her whole back side, I mean the whole thing from toes to head was one huge bruise, had to be one of the craziest things I have ever seen.

    She is convinced that the house she was living in gave her the AML and she refused to come home to the house, so she forced her husband to move into a new home! Can you say added uneeded stress??? I knew you could!

    And I too thought that the at home IV was strange. I think having a nurse to come to your home is not a good sign.

    And would there be anyone that would wanna talk about what is is like to have the disease? Like what it really feels like, what treatments are really like to get. I would like to have a better understanding so I can better deal with her. babybear I did not get your PM, so give it a try again please??

    And I live in the States, Southern California to be exact.

    Thanks again for the replys, I defiantly needed to talk to folks that have had to deal with this to, and I am glad to say that I have found them! :)