The Leukemia & Lymphoma Society - Fighting Blood Cancers
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  • 30. Re: Father diagnosed last week with AML. :(
    Robin1 Registered Users
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    HI, these are post chemo readings 5 days after. He is going in for another blood test on monday. I really appreciate everyones help.  My dad seems to be way more fatigued just walking right now.

    This was his first round, his second is in one week. I dont know what they are going to give him the second round yet. We go in , he gets transfusion of chemo and then we go home they say for 5 days strait.

     

     

    Rob

  • 31. Re: Father diagnosed last week with AML. :(
    Robin1 Registered Users
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    Feene,


    This is wonderful information. Its very appreciateive to have someone explain things to you in a more friendly format. Most doctors give the basics but this is more on a human side. The doc said he does not need a blood transfusion "yet" as he is in adequate range. Im assuming his next chemo in a week will kick things down more. I feel that we just have to run the course right now and see how he responds, second opionions may not mean much at the levels we have seen his blood work at. Right now they seem to be checking him every Mon and Thurs (blood work) and then next round of chemo. Its all they can do right now and see how he responds with a bone marrow test after. He just seems a lot weaker right now. Probably due to the chemo finnally kicking in.

     

    Rob

  • 32. Re: Father diagnosed last week with AML. :(
    Tex Registered Users
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    Okay, that sounds like he's going in for a consolidation round following a lighter 5+3 type induction.  It would help us figure out what's going on if you can get some drug names from a nurse.

     

    What are his counts today (last time checked and when)?  Again, if you could just post HBG, WBC, PLT and nautrophils (ANC or NEUT), that will give us something to latch onto.

     

    The fatigue could be low HGB or poor oxygenation of his blood.  Or it could be any number of things.  Typically, the first guess would be low HGB.  Of course, chemo can cause loss of muscle mass.

     

    But it's not uncommon to be very tired after the chemo we go through to treat this.  It should get better.

     

    Blessings

  • 33. Re: Father diagnosed last week with AML. :(
    tgerak Registered Users
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    Sorry to hear of your dad's diagnosis.  Do you know what 'light chemo' regimen he is on?  Is it perhaps Vidaza or Dacogen?  I couldn't find that in your thread, but perhaps it is there.

     

    My mother was diagnosed 2.5 years ago at age 81.  I asked her oncology nurse how long she had if it went untreated, and she said while no one knows, it was likely weeks rather than months.  She was in the 30% range as well, had all the high risk indicators.  She has been treated with Vidaza and it has worked well for her.  There's a thread on treatment in the elderly that has a lot of great info.  You might want to check that out if you haven't found it already.

     

    I don't think the doctors are trying to scare you.  If you do any research on the statistics on AML in people in your dad's age range, they're pretty grim.  I spent a lot of time on google after my mom's diagnosis and thoroughly freaked myself out.  My mother on the other hand took the perspective that the statistics didn't apply to her. Someone had to be in the group that made it beyond two years, and there was no reason it couldn't be her.

     

    I'm sure her attitude had a lot to do with her progress thus far, plus her overall health before the diagnosis.  Other than the AML, she was (and is) in great health.  She's rather annoyed by the whole thing as it slows her down.

     

    Keep asking the docs lots of questions and read the resources that are out there.  Let us know if we can help support you.

     

    Tricia

  • 34. Re: Father diagnosed last week with AML. :(
    Robin1 Registered Users
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    Hi blood counts are low tex, and he is very tired yes, its been 7 days since chemo. Im finding out monday which drugs he will be on. His nautrophils are 500 (low) but not low enough yet for them to give an infusion. Maybe monday if they check again.

     

     

    Thanks tex, I will update you soon

    Rob

  • 35. Re: Father diagnosed last week with AML. :(
    Robin1 Registered Users
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    Tricia, thats great to hear about your mother. I am not sure what drug my father is on but will find out soon. He is very very tired now after his first phase of chemo. 6 days after and he seems to be more fatigued. They will see him again on monday for blood check. Then week after will be second phase of chemo. I will post his updated levels on monday for you all to see.  My dad is upset about fatigue and depressed but he feels god and everything will work out fine.

     

    I will look at the elderly thread soon if I can find it.

     

    Im passing everyones info over to my mom I read here. Thanks a bunch.

    Rob

  • 36. Re: Father diagnosed last week with AML. :(
    tgerak Registered Users
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    Robin,

     

    My mom's neuts were below 500 for nearly a year.  It was in the 250 range for a long time, and until recently had not been anywhere near 1000 since her diagnosis.  Yes, 500 is low.  You should follow a neutropenic diet and know what you're getting into and what you should avoid.  In and of itself, an ANC 500 is not the end of the world.

     

    Dacogen and Vidaza work the same way.  They affect the methylation process and try to slow down the progression of the AML until the marrow can kick start itself and start working, in laymans terms.  It seems to be doctor preference as to which one is used.  Dacogen was first to market, Vidaza followed.

     

    Any idea what your dad's cytogenics are? Many forms of AML present themsleves with certain mutations, and each responds to treatment differently.  My mom was del 7q, which typically doesn't respond well to  7+3 chemo.  It may be good to know.  I wouldn't worry about it too much, but it's one more piece of information you can arm yourself with.

     

    As others have said, counts fall after chemo, and then start to come back.  If you're seeing them drop, that's OK.  Doesn't mean the treatment isn't working.  Certainly keep asking the doctors and their team what's going on so that you can best support your dad.

     

    If I did it right, below is  a link to the thread I was thinking of.  John started it nearly 2 years ago.  I found it in the older posts section.  Let me know if the link doesn't work.

     

    http://community.lls.org/thread/4040?tstart=180

     

     

    Tricia

  • 37. Re: Father diagnosed last week with AML. :(
    alwayshopeful Registered Users
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    Oh Tricia - when you say that the oncology nurse said that your mom probably had weeks and not months, I wonder that about my Mom.  Even though she has started treatment on Vidaza and Revlimid, her bone marrow blasts went up a little bit after the first cycle.  She is now on second cycle.  But weeks have passed, so I wonder if "weeks" doesn't apply if you are taking some kind of treatment.  Anyone out there.....advice?

  • 38. Re: Father diagnosed last week with AML. :(
    Feene Registered Users
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    Hi Robin,

     

    Question regarding weeks to months. Most likely if no treatment was given it would be weeks as the body would lose its ability to fight infection and if the platelets are involved bleeding could be the cause of death. But if he responds then it should be much better. No one knows for sure as the disease can come back with little notice. Some folks require 2 inductions for a remission and then of course some do not get a remission at all even with chemotherapy.

     

    So for the MDs to state how long one can live, depends on so many things.  General rule of thumb, if a person has a long remission that usually is a better sign when the person relapsed has to go through induction again.

    There is no doctor that can tell you how long a person can live, so the stats are the only tool to go by and each of us do not know what part of the stats we will be.

     

    I have now read up on the stats for my type of leukemia and they were that 10 - 15% die during induction. So there are some many things that can infleunce journey.

     

    So I know that is frustrating but no one has a magic ball to tell any to us how long we will live.

     

    In your prior note you stated that his neutrophils were ~ 500 and maybe a transfusion next week. Neutrphils are one part of the total WBC. Neutrophils will not be transfused. Prior maybe back in the early 80's folks tried to transfused WBC and it was very difficult to do without much benifit.

     

    Only platelets and HgB.

     

    The neutrophils will cycle done and then they should come back up. The usual is that should be on the downward trend and bottom ~ 10-14  days after therapy.

     

    Below I copied in my WBC and ANC through my induction and discharged on 4-26-11. So I hoping that this gives you a feel for how blood counts fall and then return.

     

    And your father had a lower dose of therapy.

     

    God Bless!

     

    DateWBCANC
    3/29/1123.91.0
    Chemo started PM3/30/1130.74.4
    3/31/1130.45.4
    4/1/1146.113.6
    4/2/1176.323.3
    4/3/1168.10.6
    4/4/1132.41.6
    4/5/1110.00.8
    4/6/111.10.1
    4/7/110.3N/A
    4/8/110.4
    4/9/110.10.1
    4/10/111.50.1
    4/11/113.00.2
    4/12/111.41.1
    4/13/110.50.4
    4/14/110.70.5
    4/15/110.70.3
    4/16/110.30.1
    4/17/110.50.1
    4/18/110.60.2
    4/19/110.90.4
    4/20/111.20.8
    4/21/111.40.8
    4/22/111.71.0
    4/23/111.70.8
    4/24/112.01.1
    4/25/112.51.0
    Discharged4/26/11260.9

  • 39. Re: Father diagnosed last week with AML. :(
    Tex Registered Users
    Currently Being Moderated

    Let me see if I can get a handle on the the timeline here.

     

    He had a five-day round of chemo that he finished about a week ago and he's scheduled to begin another round in a week?  So, two rounds in about three weeks?

     

    To be clear about one thing, neutrophils are a form of natural killer white cells, the kind that go after infection.  They only infuse "blood product" (red cells) and platelets.  As a rule, they use Neupogen or some other type of growth factor to get white cell numbers up.

     

    Let us know what you find out Monday.  Knowing the chemo(s) to be used would really help us support you.

     

    Blessings

  • 40. Re: Father diagnosed last week with AML. :(
    Robin1 Registered Users
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    Hi Tex,

     

    He had a five day round of chemo he finished  a week ago. They are doing his blood work tomorrow and then he is scheduled for another round next week. So 2 weeks between chemo treatments.  He is only on decitabine the doctor just told me.

     

    He is tired and fatigued and breathless. About 20 feet of walking and he needs to rest. Doc says this could be either the chemo or the lukemia, to early to tell since this just started.

     

     

    Rob

  • 41. Re: Father diagnosed last week with AML. :(
    Robin1 Registered Users
    Currently Being Moderated

    Hi Feene,

     

    Thank you for your information.  Yes I do agree with what you are saying regarding the docs and what they do and dont know. It would be nice if they explained things the way you guys do though.

     

     

    Your chemo was intensive correct? My fathers is light so "decitabine" and im just wondering if this will even benefit him at all (hoping it does). I dont know your age but he is 77 very active and this has whiped him out with fatigue and gets tired  very fast. I assume this is normal for chemo. He is eating ok, but has a hard time getting around. Tomorrow I will post his blood work. I will also assume that the counts will be lower because it will have been 8 days after chemo and hes on downward trend.

     


    Question, If they give him a blood transfusion will it give him more energy before his next chemo in a week???

     


    Thanks!

     


    Rob

  • 42. Re: Father diagnosed last week with AML. :(
    Feene Registered Users
    Currently Being Moderated

    Hi Rob,

     

    I am 50 years old and Yes I did have the intensive therapy.

     

    I think one of the most frequent side effects of chemo is fatigue. Think of it as your body is going through surgery (chemo surgery) LOL  and time and time again.  Just when you are feeling better you have to do it again.

     

    If your father needs a Red Celll Infusion (packed cells / Hgb) this should help him feel better. When your Hgb is done it is like being anemic. But this anemia is due to the chemo or disease.

     

    Will look for your next post.

     

    Feene

  • 43. Re: Father diagnosed last week with AML. :(
    Tex Registered Users
    Currently Being Moderated

    Okay, thanks for the infprmation.  Decitabine doesn't seem to be a really powerful drug, compared to drugs like cytabarine at least.  It is more typically used for older patients, so that would explain that.  From the applications I've read about here, it seems that, at present anyway, they use it more to establlish and maintain the disease almost like a chronic.  That's not technical, that's just kind of an observation from what folks have been writing over the past few years.

     

    You say your dad is strong.  I can't remember if you've had a second opinion.  It might be time to look into one, if you haven't already done so.

     

    Blessings

  • 44. Re: Father diagnosed last week with AML. :(
    Robin1 Registered Users
    Currently Being Moderated

    HI all.

    My fathers second blood work has come back after chemo:

     

     

    NameBasophils %, automated countEosinophils %, automated countHematocritHgbWBC COUNTLymphocytes %, automated countMCVMonos %, autoNeutrophils %, automated countNeutrophils auto countPlatelets countRDW, RBCRed blood cells countManual differential?
    Standard range0-2 %0-6 %39.0-51.0 %13.0-17.0 g/dL3.5-12.5 K/uL13-44 %80-100 fL5-14 %41-79 %2.1-7.4 K/uL140-400 K/uL11.9-14.3 %4.10-5.70 M/uL
    8/18/20111828.510.31.865841250.54014.93.40PROTOCOL
    8/22/20111628.59.82.171861220.56715.53.31PROTOCOL

     

     

    His WBC count has risen, and his Platelets count also. The doctor only replied with this:

     

     

    Hi, , we do not need any transfusion based on the labwork from today
    The white blood cell count is low so please watch out for infection.
    Please repeat labwork again on Thursday.

     

     

    The WBC was already low but has risen. Is she just saying just keep watch on it. I know its not the standard range but are these more positive results?

     

     

    Just curious.


    Thanks friends.

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