The Leukemia & Lymphoma Society - Fighting Blood Cancers
20 Replies Latest reply: Mar 20, 2012 2:04 PM by alwayshopeful RSS

Father with AML

LeighS Registered Users
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Hi there, I've posted here before back in Spring of 2011 and I had just found out that my dad had MDS. Well it has now gone into AML and they want to start the chemo treatments next week. My dad is 78 years old, a heavy smoker, and doesn't eat or drink like he should. I've just recently read that someone his age has about a 50% chance of the treatments even being successful.

I'd like to know if anyone out there has had a family member with a similar situation. I would really like to know what we're facing as far as the 5 days of treatment that he is about to undergo....is it worth it....and don't candy coat it for me, I prefer to just be told the truth and what mostly my mother will be having to deal with since she'll be the one taking care of him. She herself is 77 years old and has had a very hard time taking care of my dad. But no thanks to our crappy healthcare system with medicare and medicaid, without a nursing home taking every bit of his social security, my mom is left with nothing. So she's left trying to play nurse.

Thanks to anyone who can lend some insight.

  • Re: Father with AML
    Tex Registered Users
    Currently Being Moderated

    I can't give you information about what it's like to deal with an older AML patient.  I do know that MDS/AML is a toughie simply because the marrow has typically been under attack for a longer time.  But I beat it (knock wood), so it can be done.

     

    There are a lot of folks with parents in their 70s who I'm sure will chime in.  Just blow off the stats.  They rarely reflect what today's medicine is capable of and, well, 50% means that 50% have lived so far.  That's 50 out of 100 or 1:2.  Those aren't bad odds for a guy his age.  So just don't sweat them.  He's a study of one.

     

    Blessings

  • Re: Father with AML
    bettf Registered Users
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    You can read about an 80-year old who was diagnosed 1 1/2 years ago and had several clinical trials on my thread

    Husband with AML (undiff., M0) failed induction

     

    also, if he needs it his doc will order rehab after induction and home health nurse visits after he gets home, all paid for by Medicare.

    Bett

  • Re: Father with AML
    LeighS Registered Users
    Currently Being Moderated

    I just wanted to update anyone who cared about what the latest is with what we've been thru with my dad.

    Last week he did 5 days of chemo and blood and platelet transfusions. It started last Monday and ended last Friday. He never showed any signs of a reaction to the chemo except for a little nausea, so we thought we were in good shape.

    However come Sunday night my mom had him rushed to the ER because he seemed very out of it and not responding to her like he would normally. Of course he's been very weak and barely able to get out of bed. But this was even worse than that.

    He was in ICU on Monday with what they thought could be pneumonia. They found a spot on his lung and he was running a low grade temp.

    Yesterday they moved him to a private room since he can't be around other patients (he's also neutropenic) and he was still very disoriented and confused. The night before he had refused any type of blood and platelet transfusion. He's very angry at the world for what he's going thru and I totally understand that.

    By the afternoon the doctor came in and he actually doesn't have pneumonia, he has a staph infection from the port he had inserted to do the chemo. I didn't know this at the time, but apparently he was fighting my mom on keeping it clean. They've been keeping him dosed up with 2 types of antibiotics and he finally gave in yesterday and I signed for his blood and platelet transfusions.

    The doctor feels that a second round of chemo in less than a month will just wipe him out and she's advising us not to go thru with it. Our 2 options at this point are a nursing home where he'll still get transfusions or hospice where he'll get nothing.

    We're meeting today with a palliative care physician.

    My mom and sister who I seem to butt heads with a lot lately keep saying their not giving up on him. And even though I haven't given up on my dad, I can't FIGHT for my dad. And if he has given up then what point is it in family members not giving up?? Does that make sense?? I'm the sibling/daughter that has to keep reminding the others that the inevitable is coming soon and nobody wants to face it. I feel like I need to face it and have things in order.

    The doctor also made the comment about continuing to give him platelet transfusions when he isn't even willing to fight. Like its a "waste of blood" that could be used for another child/adult that wants to live.

    Would love to hear any thoughts, comments, suggestions, etc. Thanks so much!

    • Re: Father with AML
      Marilyn Shields Registered Users
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      My Brother was just tole he has accute mylelod Lekumia and is in a different state from us. He has no other family with him and we don't know how serious this is. He sai his blood cout was 90,000. He is 61 yrs old. Can anyone help.

    • Re: Father with AML
      Tex Registered Users
      Currently Being Moderated

      I'm really confused about why they'd send anyone, let alone a 77 year-old man, home two days after chemo.  Was it Vidaza, Decitabine or something like those meds?

       

      I'm missing the step where they went from treating him to sending him to palliative care or Hospice.  What is the current state of his disease?  Are they shrugging their shoulders because of the staph infection?  Did the meds not work?  Something else?

       

      We all have our own ways of "preparing" for the death of a loved one.  Some need to be focused on it, others need to distract themselves, while others need to practice denial awhile.  Just try to remember that your mom and sister might not be on the same page as you, yet.  Give them time to catch up.  Whatever happens, whenever it does, things will begin to fall into place.  Try to let everyone work at her own speed.

       

      Blessings

      • Re: Father with AML
        LeighS Registered Users
        Currently Being Moderated

        He was never in the hospital for chemo. He was doing it on an out patient basis. He went in the hospital sunday night after a week of getting several hours worth of chemo for 5 days. It was 2 different drugs but not sure of the names.

        I honestly feel like the doctor has just given up on him after seeing how he's reacting to the chemo.

        But am I wrong here, but don't most chemo patients have a "down" time where all your levels are going to drop and its going to take time to see things rebound?

        Anyway, she basically doesn't want to administer the 2nd round and my dad said at this point he doesn't even want it.

        The family is making arrangements for him to enter a nursing home when he is discharged from the hospital. My mom has had to care for him and she herself is not capable of playing nurse.

        However today, his speech is very slurred and again he's very confused. My mother said they had him on oxygen to see if that would help??? Does that even make sense?

        And the doctor is obviously stilled confused as to whether he has a staph infection or pneumonia. He started coughing last night, so I guess now they are wondering if thats whats causing him to run the fevers.

        Another thing the doctor told my mom is that once he goes into the nursing home he'll still be able to get his blood and platelet transfusions BUT once the transfusions stop working no longer than a couple of days, they'll quit doing that plus there's a high risk of infection if too many blood transfusions are given.

        We're so clueless on this so any thoughts are welcome!

        • Re: Father with AML
          Tex Registered Users
          Currently Being Moderated

          Start with the easy one:

           

          LeighS wrote:

           

          However today, his speech is very slurred and again he's very confused. My mother said they had him on oxygen to see if that would help??? Does that even make sense?

           

          Absolutely.  If the brain is oxygen deprived, that can really muddle one's ability to think or function.  Restoring his ability to think, communicate and function can only be a good thing.  I just hope it's as simple as that.  What has his 02 Sat (oxygen saturation in his blood) been?  Has it improved with the oxygen?

           

          The reason I asked what meds they were using is that some meds they use with older folks aren't truly "chemo," per se.  Those are administered on an outpatient basis and, thus, my confusion as to why they discharged him.  But, yes, I believe that they will typically lower one's counts.  I wish someone with more experience with those meds would pop on here.

           

          Identifying infections seems to take awhile sometimes.  I think the pathologists should be able to distinguish between staph and p[pneumonia.  I suspect his dos is still waiting for the reports on the cultures.  Those sometimes take a few days to grow.

           

          I'm sorry your family is facing this.  Ask any questions.  We'll try to give you the best answers we can.

           

          Blessings

          • Re: Father with AML
            LeighS Registered Users
            Currently Being Moderated

            I'm at the hospital today and he's still taking the oxygen. But not sure about what his oxygen saturation is. But the nurse practitioner did comment that if it goes below 90, they normally give the oxygen.

            I was able to get my hands on his blood work and was going to let you see where he stood with that. They did just give him another platelet transfusion so hopefully they'll go up a little.

            Here's what we have now:

            WBC: 0.6

            RBC: 2.37

            Hemoglobin: 8.4

            Hematocrit: 24

             

            He's also getting thru an iv magnesium and potassium which were 3.3 potassium and 1.7 magnesium.

             

            All he does is sleep, sleep, sleep. And when he was originally admitted they found a spot on his lung and it's slightly larger now but still no real confirmation on if it's pneumonia or not but bacteria has grown in his blood culture so they are just keeping the antibiotics going.

            • Re: Father with AML
              alexno Registered Users
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              Sorry to hear about your Dad and don't know if I can help much but will try...

               

              As regards the sleeping...it could be due to a few things but I would suspect the blood infection has a lot to do with it..my 3-year-old does the same thing when he has a fever..pneumonia in an older person can definitely cause a decreased level of consciousness, and confusion. (Just the simple act of hospitalizing an older person can cause them to experience delirium...but sounds like your Dad has more going on than that).

               

              To me he sounds nowhere near well enough to be discharged to a nursing home yet..I would take it day by day and if he seems to be improving in activity level, spunk etc, you can revisit the chemo issue. I know old people well enough (I'm a palliative care/ geriatrics nurse) that if they say they don't want treatment...it is probably best to respect those wishes and go with it...I think some people are just tired and ready to be free of this world. However this is something that needs to be reevaluated on a daily basis.

               

              I would go with hospice over a nursing home for sure... or if not hospice is there a hospital based palliative care unit? I work in one of those and blood transfusions, radiation, and oral chemo are all given if they will be of benefit to the patient. Also... folks here can correct me if I'm wrong but most of the time acute leukemia is a pretty fast way to go...we actually don't get many people with it where I work becuase it is so quick. I am so sorry you are dealing with all this and you will be in my thoughts and prayers!

            • Re: Father with AML
              Tex Registered Users
              Currently Being Moderated

              They do give oxygen when the o Sat goes below 90.  But that doesn't mean there hasn't been improvement.  It's damned near impossible to get the to take it off once its on.  So there's nothing there indicating that his readings are still below 90.

               

              Hope he's doing better today.

               

              Blessings

              • Re: Father with AML
                LeighS Registered Users
                Currently Being Moderated

                Today we're no better. I think I feel I need to just post his updates and I'm not sure why. I normally blog but I've actually stopped doing that lately. So I come here and hope I guess for some support and comfort.

                I spoke with the lung doctor yesterday and today and he does have a lot of fluid around the lungs but it's mostly due to all the fluids he's on. They "could" take a needle and insert it into his chest and pull the fluid out but because my father hates all the poking and proding, they'll just keep a close watch on his breathing. The oxygen is set at a fairly low amount for now.

                His lung doctor also talked with me about accepting hospice as the next step.

                They've got him on the TPN but no signs of it "perking" him up and of course he doesn't touch his food or drink anything.

                My preacher came yesterday and prayed with him so I'm really praying more for his peace with God than anything else.

                • Re: Father with AML
                  alexno Registered Users
                  Currently Being Moderated

                  Sorry to hear that Leigh, I am hating to say it but he does sound like a lot of my patients. One thing they should consider is reducing the fluids your dad is on...that may include TPN, and I know that is a hard decision... but excess fluids at the end of life can cause discomfort more than they help. You are coping with an awful lot right now and you and your Dad and family will be in my prayers tonight.

                   

                  Even if your Dad is transferred to hospice... he should still get active care according to his/your wishes.. including antibiotics & oxygen if desired, and management of comfort and pain. Also.. still take it day by day, we have had people be doing very poorly and then perk up for a time... though with AML being progressive that will be tough.I will pray you are able to access good hospice care!

                   

                  Cathy

                • Re: Father with AML
                  Tex Registered Users
                  Currently Being Moderated

                  I'm sorry there's no improvement.  I hope he's able to be comfortable most of the time.

                   

                  Feel free to post here as much as you want and as long as you want to.

                   

                  Blessings

    • Re: Father with AML
      alwayshopeful Registered Users
      Currently Being Moderated

      Hi, Leigh

      I just posted about my mom on the thread 88 yr. old with AML on clinical trial if you want to read our history.  But what I want to tell you is that during the 9 months Mom has been diagnosed with AML we have been up and down from one extreme to the other - some doctors saying don't continue with chemo - some saying just supportive care - sometimes thinking it was the end - so I have learned that any of these conditions can go any way at any time.  I have learned so much from this site, and some of my decisions about my mom have been made listening to what other people have gone through and said.  My Mom had a really bad blood infection back in September, but she did get through it.  They also once thought she had pneumonia and then another time fungal pneumonia, but it turned out she did not.  Now I have prayed a lot, so I feel like Mom is alive by the grace of God, but I also prayed along the way that he would direct the doctors with the right decisions and to direct our family in making the right decisions.  Mom now is taking the Vidaza for chemo, which is the lighter kind - doesn't cure AML but can sometimes hold it at bay.  She has had a much better quality of life on this regimen.  Good luck and blessing!

  • Re: Father with AML
    LeighS Registered Users
    Currently Being Moderated

    Just wanted to thank all of you for your support and prayers. My dad passed on March 4th at 8:30 in the evening. I stayed by his side and held his hand until the good Lord took him. Thank you again to everyone here.

    • Re: Father with AML
      Tex Registered Users
      Currently Being Moderated

      I'm so sorry to learn of this, Leigh.  I wish his story had ended differently.

       

      Please know we're here if you need to vent, unpack some emotions or just talk,  I'll offer prayers are for you and your family.

       

      Blessings

    • Re: Father with AML
      felursus Registered Users
      Currently Being Moderated

      So sorry to hear about your dad's passing.  I'm glad you were able to be with him until the end.  I'm sure he was aware of your presence and took comfort in it.  Keep writing in - don't be afraid to vent, express frustrations, talk about how you are doing, etc.  We are here to listen and help.

      Hugs,

      Karen

    • Re: Father with AML
      alwayshopeful Registered Users
      Currently Being Moderated

      Leigh, I am so sorry to hear of your dad's passing.  My thoughts and prayers are with you and your family.

      warmest regards,

      alwayshopeful

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