my dad has AML and wondering if we should get a new doctor

kidstand
kidstand Member Posts: 1
edited March 2014 in Leukemia #1
Hi, my dad is 56. He has a blood disorder - myeloidfibrosis and AML. He went through induction chemo. After he had tons of blood transfusions and his blood cell counts aren't going up the doctor says his body is "ripping up the blood." So they have been dumping blood in and not much is happening. In the middle of all of it he has gotten infections. I'm wondering if this is normal - should we go to another doctor. We really like our doc but want to do whats best for my dad. We just had a bone marrow biopsy and found out the leukemia is still there. So we are doing another round and then trying to go straight into a bone marrow Transplant. I'm in Texas at Baylor Grapevine. I'm just wondering if we need to go to a teaching hospital like Southwestern in Dallas or MD Anderson in Houston.
Any Advise???

Comments

  • farahi
    farahi Member Posts: 22
    #2
    my dad has aml
    Hi, i was diagnose with AML on 7/17/09 and went through induction and the first chemo didnt work so we did it again and after that for 20 somthing days all my counts were almost 0 during this time i had some infeccions and countless transfusions (blood & plt)and finaly after 70 days at the hospital im finally home (being home for 2 weeks now) and waiting for the results of my bone marrow to see if im on remission.

    Good luck!
  • LMiller603
    LMiller603 Member Posts: 3
    #3
    Infections
    After they receive chemo, their counts bottom out and they are likely to get some infection from any direction. The hospital will do cultures and blood work to find the source of infection be it bacterial, fungal or whatever and then will treat accordingly.
    My husband has been in a teaching hospital for treatment and later a clinical trial. I prefer the teaching hospital but that doesn't mean that they are your only option. I'd take a copy of the file and go for a second opinion.
  • LMiller603
    LMiller603 Member Posts: 3
    #4
    AML is very aggressive
    AML is treatable but very hard to cure. My husband has AML with M6. He's always been very healthy. Now, he's had multiple chemos and many bone marrow biopsies. He was in remission for a very short time. When it's in remission, that doesn't mean that it's gone. It means that it's below a certain percentage. AML grows rapidly. They have to attack it aggressivly. It wants to come back. After going into remission again, my husband had a bone marrow stem cell transplant. He has a rare bone marrow type and was only able to 1/2 match with 3 siblings. He's doing pretty good with that. Attitude is everything. A positive attitude from the family and lot's of prayer is important. Nurses say that those with negagive attitudes have a harder time. So, tell all your friends and relatives to pray hard. It is curable but very hard to cure. Younger people do better then older ones. My husband will shortly turn 58. He seems to be doing pretty good but it's not been long since his transplant.
  • mtbikernate
    mtbikernate Member Posts: 31
    #5
    I can't say enough about MD
    I can't say enough about MD Anderson. I got AML at 28y/o last year. My local doc shipped me to MD Anderson. I was an inpatient for a month, but I was in remission by the time I left. I have remained in remission since (almost 11 months now). Almost all of my experiences with that hospital have been very positive. It's a wonderful environment to be treated in, too. Very calming atmosphere, outstanding volunteer services, and very good patient advocates that get things done when you do have a problem.

    That said, because I'm young, they hammered the AML HARD with chemo. Harder than they do for older patients, as I understand. My cell counts bottomed after every chemo. My white cells hit 0.0 6 times in the past year. I got sepsis one of those times. It's just a risk you have to take (I didn't leave my house except for doctor's appointments for about 9months). I would get many transfusions every time, too. I would go in typically twice after a chemo treatment and then get 2-3 units of red cells and 2-3 units of platelets each time. I suspect older patients would probably have to get more transfusions.
  • josephajain
    josephajain Member Posts: 4
    #6
    AML
    I hope he will get soon and don take so much tension about it otherwise you would get into depression.Check out:-

    http://www.indepression.com/

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