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My Choices for newly diagnosed AML

Home forums Patient Message Board My Choices for newly diagnosed AML

Viewing 15 posts - 1 through 15 (of 35 total)
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  • #16842
    Russ P.
    Member

    After my dx of AML, went for a consultation with U. of Chicago Cancer Center. After review of my numbers and prior treatment, these were their suggestions:
    1. Clinical trial: Mylotarg plus Zosuquidar.
    2. High dose Ara-C plus Mitoxantrone. (50% remissions expected)My Hemo/Onc could do this.
    3. Clinical trial: Vidaza plus PXD-101
    Thought I would post these for any comments someone might have.

    #16843
    shirlsgirl
    Member

    Oh my, Russ. I’m so sorry about your AML diagnosis. Do you have any positive info on the clinical trials? How quickly do you have to decide on your treatment? I’m sorry, I’m absolutely no help at all. Just want you to know that I’m pulling for you. Hang in there Russ..

    Jody

    #16844
    pigduck
    Member

    Dear Russ,

    My dad was just diagnosed with AML yesterday and it seems he’s been given the same 3 options as you. Lucky for you you’re in America where the said drugs are available.

    My dad has no choice since we live in Malaysia and to travel now we don’t think is wise. So I believe we will be doing option 2. We don’t know what drugs will be used but from my brief reading last night, most of the chemo drugs are the same…

    I’m just worried that my dad can’t take it.. but the doctor reassured us there are drugs to counter the after effects… so we don’t know…

    #16845
    Russ P.
    Member

    Thanks all for your comments. They could not give me any positive info about the trials except that #3 was recommended as the best for me. #1 involves a mono-clonal antibody against CD-33 (myeloid marker) but has some possible bad side effects. #2 involves a month hospital stay and my hemo/onc didn’t think I could take it because of my age. Pigduck, your dad is comparitively young and should handle the chemo OK. I’ll pray that it works for him.

    #16846
    JaniceR
    Member

    Russ: My dad has also just gone from MDS to AML. Here’s the options the doctor email me for my father (he’s 72).

    In summary, he has two major choices.

    Low intensity therapies to control his disease for some time (maybe a year or two at best). The benefit is low toxicity and outpatient. Since he is tolerating decitibine adding Valproic Acid (also known as depakote) might be reasonable. This combination has been reported by several groups including a recent study in Cancer by the MD Anderson (Houston) group. Low dose melphalan or mylotarg would be other leukemia treatments with non-curative intent if this does not hold the leukemia cells in check.

    High intensity treatment designed to cure. But also high risk. One strategy is standard leukemia therapy in the hospital for a month with daunorubicin (or idarubicin) combined with ara-c (cytarabine). This part has a 5-10% death risk. If the leukemia cells are decreased, the next month a mini-allogeneic (donor) transplant could be performed. Based on a recent overview from Europe, about a third of patients with MDS with this strategy are cured, a third relapse quickly, and a third die from complications. So one might shorten ones life with this, but this is the only hope of long term survival.

    Unfortunately neither choice is great. So it comes down to where does he want to place his risks versus benefits.

    Hopefully this is helpful.

    Stuart L. Goldberg, MD

    #16847
    Russ P.
    Member

    Thanks for the info, Janice. My hemo/onc just called and he indicated the high intensity treatment would be a “fools errand” for me. He recommended that I go with the Vidaza + PXD-101
    trial as it could buy me some more time.

    #16848
    willie
    Member

    Russ I am not sure if it will give you more insight but you might want to find out what stage the clinicals trials are. I was told that stage 1 trials are pretty rugged in that doses may be heavier. Willie

    #16849
    pigduck
    Member

    Thanks Russ for the prayers…

    You’re quite the survivor… reading all the rounds of Vidaza and Dacogen it’s amazing!

    I’m sure whatever path you take, whichever option you take, it’ll be ok

    #16850
    Russ P.
    Member

    Thanks to all for your comments. Unfortunately my selected option is a phase 1, and no remission is expected. The hope is for extended time and QOL. So many people going through rough times on this forum – I pray for you all.
    PTL there is a better life after this one.

    #16851
    pigduck
    Member

    Hey janiceR,

    my dad is going to be doing the idarubicin + ara C chemo… reading through what you’ve written, it’s so worrying!

    Hopefully my dad’ll be able to pull through…

    unfortunately at his age, a BMT is not possible so it’ll just hopefully kill off the cells..

    according to my dad’s doc, he said that if we eradicate the aml he’ll just revert back to MDS which means… would a relapse also be very possible??

    #16852
    JaniceR
    Member

    Hey PigDuck! My dad’s other doctor told him that doing the Decitibine (since he tolerates it well and it’s “holding” his AML at 20% blasts) and adding the Valproic Acid (a pill) is a good option for him… and he could go 10 years like that the doc said. The one doctor is a real “upper” and the other is a real “downer”. The stronger chemo that you mentioned is indeed worrisome and we are not willing to take that risk. If he didn’t have any other option and was as young as your dad, it’d probably be a real good chance at remission.. why not a SCT as well? He’s still young enough? A good friend on this forum’s (Lynette) mother just passed away from complications after getting the strong chemo. It worked for her (putting her into remission), but the chemo weakened her heart and I guess since she was in her seventies, it was just too much…she was our angel though (and our hope). Although my dad is in good shape, he is older and stronger chemo may not be a good option for him. If the AML got out of control, we would have no other choice and have to try it.
    Anyway… since your dad is still young, he’d probably do just fine on the stronger stuff and could keep him tx free and in remission for awhile… and when it does come back, they’ll have another new drug out to “hold” it for awhile (and so on). I try not to worry and think about it so much… We travel with him, make memories with him and do all we can now (while he’s still in good shape)… no regrets and hope for the best. Good Luck to your dad, I’m sure the chemo will work for him… he’s so young!
    Janice

    #16853
    Kathy7964
    Member

    Russ-just wanted to let you know I will be praying for you. You have been so helpful to me and others on here. My Dad is starting to talk to me a little about this battle he is facing. Just wanted to say thanks (I haven’t posted on here for awhile but still reading).

    Kathy

    #16854
    Russ P.
    Member

    Kathy, thanks for your thoughts and prayers. Hope your dad will be over the infection soon.
    It’s great his blasts are down and hope they don’t go up. Pigduck, hope all goes well for your dad on the induction chemo. His age should favor him but it will be rough. I’ll be praying
    for both of you. God Bless

    #16855
    KWJ
    Member

    My dad just started the Zarnestra Trial on Thursday, That was his only option as his health is not very good. We are so hoping it will help.

    Good Luck Russ I hope your option helps keep this nasty disease at bay for a few more years!

    #16856
    Russ P.
    Member

    KWJ, Hope the Zarnestra works for your dad. I’ll say a prayer to that effect. Just a comment that when I pray for the ones going through this ordeal, I include the caregivers.
    You need all the help you can get.

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