The Leukemia & Lymphoma Society - Fighting Blood Cancers
25 Replies Latest reply: Sep 12, 2011 3:10 PM by jayd RSS

Dad Recently Diagnosed with MDS/AML

jayd Registered Users
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I just found this site and posted a message in the newly diagnosed thread and was recommended to come here.  Basically my father (63 years old) was recently diagnosed and was given 2 options - outpatient chemo using Vidaza or an aggressive inpatient chemo that would last 6 weeks and likely make him very sick.  The doctor recommended the Vidaza but left it up to him and he went with Vidaza.  He has done his round of 7 days and is now off for 3 weeks before the next round.  The doctor says he will do just 3 rounds before doing another bone marrow biopsy to determine if the Vidaza has worked at all.  If it has he will continue the Vidaza 3 more months and do another biopsy.  If the Vidaza is showing no improvement in the first 3 months he will recommend the aggressive inpatient chemo (I don't know the drugs).  From the little I've read here it seems that Vidaza could take much more time to work, I don't know whjy the doctor is being so aggressive.  Also, I consulted with a hematologist friend who said he would not recoomend the aggressive inpatient chemo as it would have a good chance of killing my father since its so potent.  My father lives in a different state so I don't get to go to his doctor appointments with him so don't get all the info, but have been told his doctor is good.  He can't really go for a second opinion since he has no health insurance and is getting treated on a charity basis by this hospital.  It's been tough but at least his side effects on Vidaza have been minimal and I guess we just hope for the best and achieve a remission from it and try for a transplant.  If not, I don't know what to recommend to my dad - is it worth doing an aggressive inpatient treatment that might have a high probability of death, or maybe take him back to my home state and try to make him comfortable?  It's a confusing time and I'm just looking for whatever resources I can find and appreciate anyone's input, advice, help etc...Thank you.

  • Re: Dad Recently Diagnosed with MDS/AML
    jayd Registered Users
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    I unfortunately don't have all his vitals, but I know he has been getting regular blood and pletelt transfusions and levels have been pretty low but vascillate.  I know his platelets have been as low as 12 and as high as 40, but most recently was 20.  His cyto is considered intermediate.  He has other health issues - has had heart attack (stent) and stroke and has diabetes.

  • Re: Dad Recently Diagnosed with MDS/AML
    willowbayfarm Registered Users
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    Hi Jayd,

     

    I'm sorry you have reason to join us here, but welcome.  With your Dad's complicating factors of the heart issue, etc., Vidaza seems a reasonable approach.  I would suggest you use the time while he's doing the Vidaza protocol to educate yourself about the disease - since you are referring to it as MDS/AML, I'm assuming his blast percentage in the marrow at diagnosis was under 20%?  The main LLS website has a section with disease information, so you might read up on MDS to give yourself a base of knowledge from which to operate.

     

    Another thing to consider is having your Dad sign a release so you can talk with his doctor personally and ask him your questions - he is the one most familiar with your Dad's case and that way things don't get lost in the translation because you're receiving information second hand. 

     

    From the sounds of things, you have some time to formulate a plan A and a plan B, depending on his response to the Vidaza.  I'm an AML patient, so not so familiar with the protocols for MDS, but the main LLS website has a PDF booklet for each type of blood cancer, as well as general information regarding the various diseases.  In addition, if you click on the link "National Education Programs" (left hand side of the main LLS page) you should be able to find some transcripts of LLS sponsored presentations with national experts and gain some more information.  If I'm not mistaken, there was a program fairly recently on MDS.  I am having trouble this evening accessing the main LLS page, otherwise I would provide you with some links.  I'm hoping I've given you enough information to find the publications and transcripts I've referred to.

     

    Does your Dad live alone?  He may need help at some point given the fatigue and low counts that may occur.  This might be something else to kick around with the doctor, or with the social worker at the hospital.

     

    Best wishes, and keep us posted if you would.

     

    - WBF

    • Re: Dad Recently Diagnosed with MDS/AML
      jayd Registered Users
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      Thanks for your reply, I willd efinitely check out the resources you mentioned and appreciate the advice.  I will also ask to be given permission to speak with the doctor which should be helpful.  His diagnosis from my understanding is both AM: and MDS, but I don't know if the MDS preceded the AML or not as they were diagnosed simultaneously.  He does currently live alone and it's not a major concern for now, but going forward I'm sure it will be.  My siblings and I were trying to get him back to our home state before treatment started, but because he has no health insurance it was a risky proposition.  If the doctor recommends aggressive inpatient chemo we will try to get him on a plan and move him back here if it's at all possible.  If not I will definitely have to speak with the social worker and see what else can be arranged as well as make regular trips there myself.  It feels horrible to think this way but this is getting expensive and I just hope I'm able to do it all.

       

      I will definitely keep you updated and appreciate your concern and help.  I hope whatever stage you are in this process that things are going well and you're feeling good and beating this disease.

  • Re: Dad Recently Diagnosed with MDS/AML
    tgerak Registered Users
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    Hi Jayd,

     

    I was in your exact situation last June.  My 81 year old mother was diagnosed with AML, and was told that hers had progressed through MDS.  It's an important distinction because AML that is 'de novo' may react differently to treatment than AML that has come through MDS.  She was healthy other than the AML, and had negative cyto.  Put it all together and she was in the high risk category.

     

    She had no interest in the traditional induction chemo and chose Vidaza.  Her first three months her counts were up and down, needed transfusions every 2 weeks, and had one bout with a fever that required inpatient treatment.  At month 5, the Vidaza 'kicked in'.  She started to feel like her old self and her counts started to climb.  We're now 15 months after diagnosis and she's pretty much doing what she wants to do.

     

    There are a number of threads here on the boards of people whose parents have AML and were treated with Vidaza, so you may want to crawl around and learn what has worked for them.  Everyone will have a different scenario, and there's no "right" answer.  For me, it was important to respect my mom's wishes and not second guess and wonder 'what if'.  That's easy to say now, but I remember the panic and spent way too much time on the internet doing research.

     

    She had very few side effects, mostly injection site discomfort and her counts did drop in the week after the injections so she was tired and susceptible to infection.  All in all, it has been a good course of treatment for her.

     

    WBF has some great links for you to do some research.  I am not familiar with how Vidaza may react with your dad's other health conditions, so that could be a good discussion point with his doc.  My personal thought is that it would likely be better tolerated that traditional chemo, but that is certainly an item to consider.

     

    We're here to help however we can.  Let us know how he's doing.

     

    Tricia

  • Re: Dad Recently Diagnosed with MDS/AML
    Tex Registered Users
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    I just replied on your thread on the Newly Dx'd.  One thing I saw here I didn't notice there is that it seems the doc did, indeed, offer regular induction chemo.  So my curiosity moves from why didn't the doctor offer it to why didn't the doc recommend it?

     

    The chemo only lasts a week but we're in the hospital for quite awhile waiting for our blood counts to recover.  I still don't see why the doc preferred it over the Vidaza. I'd definitely want an explanation for that.

     

    MDS precedes AML, I've never heard of them showing up simultaneously, though, like i mentioned in my other post, my MDS developed into AML rapidly.  I didn't say I'd been mysteriously anemic for about five or six years before I was dx'd with either.

     

    Do keep us posted and do get that permission signed so you can talk to his doc directly.

     

    Blessings

    • Re: Dad Recently Diagnosed with MDS/AML
      jayd Registered Users
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      Thank you all for your helpful advice and support. I will definitely read up on the links provided so I too will hopefully be able to contribute to these discussions.

       

      Tgerak - I'm sorry for what you're going through but it is very encouraging that things are going well and improvement can happen anytime!  My dad's doc originally gave a very poor prognosis of a year, 2 if he was very lucky.  I hope the Vidaza works well and my dad's positive attitude helps him pull through and surprise everyone.

       

      Tex - I haven't heard the term induction chemo so I can't be sure we are referring to the same type of treatment.  All I know if the aggressive treatment offered requires 6 weeks of inpatient and to expect my dad to get extremely sick.  One doc even told me a patient can die just from the chemo.  It was for these reasons the doc recommended doing Vidaza first and relying on the more aggressive treatment as a plan B option if the Vidaza has no positive results in the first several months.  Given peoples' experiences here I'm not sure why the doc wouldn't try Vidaza for longer than just 3 months as it seems to take some time to really kick in, but I will have to ask that question to him.

       

      As far as the diagnosis, I have no diea how long he had the MDS prior to AML, but that is the likley progression.  His doc diagnosed both the MDS and the AML at the same time, but I didn't mean he got them at the same time.  Here's the whole story - He had a routine blood test several months ago which showed low levels of blood and platelets and the doc gave him some vitamin shots to hopefully get his levels back up.  He recommended doing a bone marrow biopsy to be sure but my dad couldn't afford it and was feeling better after the shots.  Then he went into the hospital a couple months ago for some unrelated problem and after all the tests the doc said he has MDS and AML.  So it sounds like he probably had the MDS for some time and it developed into AML as it was not treated early on.  That's just my guess, but it makes sense.

      • Re: Dad Recently Diagnosed with MDS/AML
        Tex Registered Users
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        jayd wrote:

         

        One doc even told me a patient can die just from the chemo

        The operative word there is "can."  That is extremely rare and I can't remember anyone actually dying from chemo in my long years here.  Chemo can cause a lot of issues that are hard to fix and with your dad's heath problems, that is something they'd want to watch out for.

         

        Yes, I'm sure we're talking about induction.  Standard induction is called 7+3 and involves seven days of 24 hour chemo infusion plus an added infusion of another chemo for three days.  It is usually predicted that it will take 3-4 weeks to get out of the joint but with your dad's health issues the doc could be allowing for the extra time he might have to stay.  I was in a total of seven weeks just waiting for my counts to rise.

         

        Induction chemo does usually make us really sick.  I wouldn't want to recount all the crap that happened to me in the hospital.  But it's temporary sickness compared to a severely shortened life span.  The only reason not to go for it is those cases where it can be reasonably predicted the chemo might actually shorten the person's life and/or severely reduce the patient's quality of life.

         

        Hope this helps some for when you talk with the doc.

         

        Blessings

        • Re: Dad Recently Diagnosed with MDS/AML
          jayd Registered Users
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          Thank you for that information.  It is hard to understand why the doctor didn't recommend induction right away, all I know is he said it didn't prove to be much better than the Vidaza and it was a lot more difficult with side effects and having to stay in the hospital.  It must be the doctor knows something he hasn't shared about my dad's exact condition, which is why he is preparing my siblings and I for the worst by saying 1-2 years if lucky and that his disease is incurable.  My deepest fear is that because my dad is a charity case and these treatments are expensive he isn't getting the best care, but I don't really have any way to tell if that's the case, and even if I did there isn't anything I could do about it as I don't have millions of dollars to pay out of pocket.  I considered paying out of pocket to get him a second opinion, but conclued there was no point since even if the second opinion was a completely different course of treatment there would be no way to get him the treatment anyway.  I did speak to one doctor who is a friend of a friend and considered a huge expert in this field and runs hiw own cancer center who occassionaly takes patients as charity case but said he simply couldn't justify this one as the drugs would be $20k/day and his prognosis is so poor etc...

           

          Again I thank you all for the help and education.  At this point it seems the best I can do is be with my dad as much as I can, do my best to advocate on his behalf and deal with each step as it comes.

          • Re: Dad Recently Diagnosed with MDS/AML
            momto22009 Registered Users
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            jayd-

            I'm sorry that you dad is battling AML.

             

            Has your dad applied for Medicaid?  Has he met with a financial person from the hospital to see if he qualifies for any public assistance or other programs?

             

            From my own research (and I am NO expert on AML or treatment), I've learned that many doctors use Vidaza and Dacogen for older patients who might not tolerate induction therapy.  Your dad isn't what I consider old, but the dr might be recommended the Vidaza for other reasons--cytogenetics or his other health issues. Again, I don't know a great deal about this, but I've read posts from many other older patients or family members of older patients who received the recommendation to use Vidaza or Dacogen.

             

            Have you looked into any clinical trials?

             

            Please stick around. The regular members here know a lot and can offer some guidance and support.

            • Re: Dad Recently Diagnosed with MDS/AML
              jayd Registered Users
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              Thank you for your concern.  Yes I helpd him apply for medicaid thru the hospital immediately after diagnosis.  He actually applied 8 months ago and got turned down because he was "able to work."  The hospital is fairly confident he will get it but they say it takes up to 120 days to get accepted/denied.  His cytogenetics are considered "intermediate" but his other health issues are probably the main issue.  We did ask about medical trials at this particular cancer center and the doc said there were non currently.

              • Re: Dad Recently Diagnosed with MDS/AML
                willowbayfarm Registered Users
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                Hi Jayd,

                 

                It's good you already started the paperwork for your Dad's disability claim.  I was told by the financial folks at the Hutch in Seattle that AML is pretty much a slam-dunk for a disability claim, but as you know it takes time to get the ball rolling and to start receiving benefits.

                 

                Tex had a good thought about accessing your Dad's medical records.  Your Dad is entitled to copies of every report in his file, and virtually every test he has had should generate a written report of some kind.  Some of them may take some sleuthing to comprehend.  I found my doctor was pretty amenable to  giving me a copy of any report I requested, although I have had some other doctors where getting copies of my stuff was like pulling teeth.  You are going to need that written, signed release from your Dad to obtain them on his behalf.  He may not be feeling well enough to plow through them, may have limited understanding of what they mean, and be too unmotivated to learn.  Chemo side affects include some cognitive problems, including concentration and retention of information, as well as memory issues.  In addition, I experienced a lot of fatigue and lack of motivation.  All those things factor into him needing help from loved ones who aren't sick and going through treatment.

                 

                AML has a very steep learning curve.  Be patient with yourself as you learn more about it and if you have questions, we'll try to guide you to the answers.  While we're not doctors here, there are some folks inhabiting these boards with a generous amount of street savvy and front-lines experience.  Don't hesitate to make use of us.

                 

                -WBF

                 

                • Re: Dad Recently Diagnosed with MDS/AML
                  jayd Registered Users
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                  I'm glad you mention these things, I'm already learning a lot.  My dad definitely has some degree of dementia, difficulty retaining and absorbing information and extreme fatigue (although part of that is becasue he can't sleep very well), and almost no motivation to do anything (I thought that last one was depression, but perhaps not).  It's good to know these things are common.  I will do my best to get his records and try to figure them out and perhaps that will tell more story. 

                   

                  Thanks again!

                  • Re: Dad Recently Diagnosed with MDS/AML
                    willowbayfarm Registered Users
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                    Hi Jayd,

                     

                    Yeah, the chemo absolutely has an effect on the cognitive function - I found it quite frustrating.  There were books I had brought with me to the hospital to read, but I simply could not concentrate well enough to get through them, and I love to read.  Once I landed at home, I had a list of probably around a dozen projects that I had figured out to while away the time, but I needed the list to remember what they were, and all the projects were in various stages of completion for quite a while as I couldn't stay focused long enough to complete any particular thing, I just sort of flitted around from task to task.  Also, my vision was affected to some extent, which made it even more difficult to read for very long.

                     

                    One thing I found when going through my medical reports written in what seemed like a different language is that Google is your friend - I simply Googled the terms I was unfamiliar with, and that helped me quite a bit.  But having your doc buddy help you out after you've identified the reports you really don't understand is a great idea, well worth the cup of coffee or lunch it might cost you.  I also found, like Tex, that over time I got better at reading all that stuff.  And then there's those medical research articles... 

                     

                    - WBF

                     

                  • Re: Dad Recently Diagnosed with MDS/AML
                    Tex Registered Users
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                    When you get the records, you might even go over them with the doc so you can understand them.  Better yet, highlight the questions you have and ask the doc to help.  We might be able to offer some insight into meaning but shouldn't be relied upon to give reliable answers.

                     

                    Just to be clear, I doubt your dad has any form of dementia, at 63.  A more apt description might be drug-addled.   As WBF said, chemo can wipe out a lot of cognitive function along with the physical body.  I was trying to read a book I'd read three or four times before and would just sit there staring at a page for an hour.  This is definitely not the time to apply to MENSA.  But it's far from dementia.

                     

                    Blessings

                    • Re: Dad Recently Diagnosed with MDS/AML
                      jayd Registered Users
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                      I know it's been a long time, but I just thought I'd check in.  Life has been quite a whirlwind on so many fronts since this all began.  I've been making regular trips to visit my dad during chemo treatments when he's really weak and needs help, as well as when he has been in the hospital due to infections (3 times now).  It has taken a toll on my own family, who have been very supportive even if when it's been very stressful and trying.  It has taken quite a toll on my work as the distractions and trips are make it hard to conentrate and be productive.  When I'm not travelling I'm on the phone with my father at least 3-4 times a week to help him cope with weakness, depression and just to give some comfort.  And of course it's been pretty expensive.  But thankfully he has been doing great overall.  The doctor originally gave him a year optimistically, and until recently he's been doing well from a medical standpoint.  He had a biopsy that determined the Vidaza has given him some improvement in his condition,  even better than keeping him stabe which the doctor was really banking on.  Recently however, there have been some signs that are a bit disheartening.  He was in the hospital with a pretty tough infection a few weeks ago.  He was fine after a week, but needed 2 pints of blood and platelets (which he has needed regularly and don't seem to be sticking anymore).  The infection wasn't a shocker as he seems to get them every 3 months or so, but each time a little worse.  The most concerning thing to me is that just yesterday he was told he needs another 2 pints of blood, just 3 weeks after getting 2 pints.  I don't know how serious that is, but it seems like he simply is deteriorating slowly.  Less energy, less drive, less interest, more depressed.  The doctor said his blasts are definitely up, but would need to do a bone marrow biopsy to determine how much.  My dad said he didn't want to do it - too painful and he doesn't really want to know.  I don't think treatment would change much based on the results anyway, so I see his point and certainly don't want to make any judgements on his choices at this point. 

                       

                      Just thought I'd share and hear any feedback, advice, ideas you may all have as you've been so helpful and supportive here n the past.

                      • Re: Dad Recently Diagnosed with MDS/AML
                        Tex Registered Users
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                        Well, it does look like your dad's going to make the year and then some.  Of course, it's a concern when blasts increase and reliance on transfusions does so, as well.  Still he's far from transfusion dependent at this point.  Or, at least, this is a very mild form of dependence.

                         

                        I can certainly understand your dad's reluctance to suffer another BMB.  I think I'd do the same thing in his shoes.

                         

                        I hope your dad's able to hang in as long as he wants to.  It really doesn't seem as if there's much left to do if he's not wanting to stay in the fight.  But it sounds as if he might be ready.

                         

                        Please stay in touch.

                         

                        Blessings

                        • Re: Dad Recently Diagnosed with MDS/AML
                          jayd Registered Users
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                          So it's not a great concern that his platelet transfusions don't really work anymore and that the blood transfusions seem to be less effective and more regular?  This isn't a sign of imminent troubles?

                          • Re: Dad Recently Diagnosed with MDS/AML
                            Tex Registered Users
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                            I'm sorry if I gave that impression.  But, not to be that guy, it might be how one defines "great concern" at this point.

                             

                            This is an issue.  I guess what I'm trying to say is that the Vidaza has done what it was intended to do, buy him some time.  It seems it's losing its effectiveness.  Things seem to be in decline but it is not as bad as it could be, yet.  It is better when one needs three weeks between transfusions than it is when they need one every three days.

                             

                            I guess this is from a "things could be worse" perspective.  But they're not "worse," yet.  Still, if the docs have another trick up their sleeves, it's getting near time for them to show you what it is.

                             

                            To be clear, it is a reason to be concerned.  I'm not sure what they might do to help him turn the downward trend around at the present, though.  Again, I'm sorry if I miscommunicated.

                             

                            Blessings

                            • Re: Dad Recently Diagnosed with MDS/AML
                              jayd Registered Users
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                              First of all, no reason to apologize!  I asked for your help and impressions and appreciate your help and honesty.  If I were looking for flowery language and false optimism I'd read poetry.  Here I'm just looking for whatever info I can get so everything is very much appreciated.  My impression is the doctor might have some ideas, but my father doesn't want to do the BMB, so its probably not possible for the doctor to do anything more.  It's hard for me to get straight answers from the doctor on the specifics which is why I ask here in case others have had similar experiences.  I guess at this point its fruitless to look for more clarity than what you've provided - things are getting worse, but not horrible yet.  It sounds like we will be extremely lucky to get another year at this rate, especially with my dad unwilling to do anything but the continued Vidaza, but we have been surprised once and will just pray for more surprises. 

                               

                              Thanks again to everyone for their help and well wishes.

          • Re: Dad Recently Diagnosed with MDS/AML
            Tex Registered Users
            Currently Being Moderated

            jayd wrote:


            It is hard to understand why the doctor didn't recommend induction right away, all I know is he said it didn't prove to be much better than the Vidaza and it was a lot more difficult with side effects and having to stay in the hospital...

            I did speak to one doctor who is a friend of a friend and considered a huge expert in this field and runs hiw own cancer center who occassionaly takes patients as charity case but said he simply couldn't justify this one as the drugs would be $20k/day and his prognosis is so poor etc...

            Well, there's something you don't know you haven't told us, yet.  That's probably because you didn't know.

             

            Induction chemo is far more successful that Vidaza.  I simply don't know what the heck treatment the onc's talking about.  Again, it's your dad's heart and diabetes or there's something no one's telling you or you haven't thought to tell us.  I'm saying that because of the second doc's opinion about the outcome of your dad's case.

             

            Think you could dig around a little?

             

            Blessings

            • Re: Dad Recently Diagnosed with MDS/AML
              jayd Registered Users
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              Well all I can guess is that it's the heart issues/diabetes.  If there's anything else either I haven't been told or I didn't understand it.  I wish I could be more helpful as I know you're trying your best to help me, but I really can't recall any other relevant information.

              • Re: Dad Recently Diagnosed with MDS/AML
                Tex Registered Users
                Currently Being Moderated

                We all have so much information thrown at us so quickly, we all miss things.  That's nothing to feel bad about.  Consider it a scar of war, something we all honor as it give us a giant PITA.

                 

                You can ask for copies of your dad's charts.  They pretty much have to give you anything you want.  That could help you fill in some blank spots.  You've got to learn to sift through those things sometime.

                 

                Blessings

                • Re: Dad Recently Diagnosed with MDS/AML
                  jayd Registered Users
                  Currently Being Moderated

                  I actually told my dad to get a copy of his records with the intention of goinjg through them.  There are well over 100 pages and I don't understadn a word of it to be honest.  Maybe I'll bring a copy to a doctor friend and have him help me.

                  • Re: Dad Recently Diagnosed with MDS/AML
                    Tex Registered Users
                    Currently Being Moderated

                    Yeah, most of it's still gibberish to me.  I have found how to look for some key words or phrases and I imagine most of us longtimers have.  You just kind of pick it up.

                     

                    Blessings

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