The Leukemia & Lymphoma Society - Fighting Blood Cancers
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  • 315. Re: Dan's Autologous SCT for AML, M4...the countown begins!
    Tex Registered Users
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    Dad wrote:

     

    He also has AML M4.

     

    He had AML.  I think that's one of the toughest things for most of us to start saying.  If he's a year out from SCT with no signs of disease, it's time to start talking of the disease as something that's no longer present.

     

    Try it, it's fun.

  • 316. Re: Dan's Autologous SCT for AML, M4...the countown begins!
    dcvdoe Registered Users
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    You got that right, Tex.  I have been able to feel the life return to my body. I have been fighting AML since 2007. My counts are great and I am grateful.  It feels wonderful to feel good again and I am just 8 months from my Haplo Transplant.  Did the SCT, too, but got a glitch, so this time it has gotten better and better.  Will be a year from transplant come July 2.Yay!

  • 317. Re: Dan's Autologous SCT for AML, M4...the countown begins!
    danswife Registered Users
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    Thanks for your post, Dad.  Your son has responded fantastically!  I told Dan how your son returned to his sport and how well he did academically.  We are now 13.5 months post dx and almost 10 months post transplant.  Other than the collection of little scars on Dan's backside, no one would ever know he had this disease.

  • 318. Re: Dan's Autologous SCT for AML, M4...the countown begins!
    danswife Registered Users
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    Tex, you always know how to say it best  

  • 319. Re: Dan's Autologous SCT for AML, M4...the countown begins!
    danswife Registered Users
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    Thanks everyone, for the congrats and well wishes... for Dan and for our new additions.  Now, I must go finish "kid-proofing" my world

  • 320. Re: Dan's Autologous SCT for AML, M4...the countown begins!
    Dad Registered Users
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    Sherry,

     

    Thank you so much for sharing your story. You story of success with the decitabine trial is inspiring to me and my family.  You relieved some of our stress about the first post decitabine treatment biopsy scheduled for tomorrow.

  • 321. Re: Dan's Autologous SCT for AML, M4...the countown begins!
    Dad Registered Users
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    You're right. It is much better to think in terms of "had" AML instead of "has."  That is the way my son feels about it. I changed my original post to reflect the more positve attitude. Thanks

  • 322. Re: Dan's Autologous SCT for AML, M4...the countown begins!
    danswife Registered Users
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    Today was scheduled labwork for Dan

    He's 15 months post dx

    In remission for 1 YEAR, 1 MONTH, and 6 DAYS

    11 months post auto SCT for AML, M4. 

    WBC  4

    HGB 14

    PLT 149k

     

    Also, our little guys have been with us full time for 1 month now.  It looks like our adoption could be official in September.  Right now, life is a stream of hearings, meetings, registrations for new schools for next year, visits with attorneys, social workers, and all of the other legalities associated with adopting through foster care.  Our big kids are well too.  Our daughter turns sixteen this week.  She got her nose pierced (small diamond stud) as a gift & we are having a party at our house this weekend for her.  Our 13 y.o. son is in a weightlifting program after school now, in preparation to play freshman HS football next year.

     

    Right now, Dan has no lasting affects of treatment.  So far, he hasn't had any illness either.  Fatigue isn't even a problem anymore.  He continues to take really good care of himself and follows his doctor's plan for bloodwork, follow up tests, and biopsies closely.

     

    Well, I need to go.  Two little guys are fighing (again) over action figure in a pile of, ummmm.....maybe 20?

     

    Take Care,

    Darcy

  • 323. Re: Dan's Autologous SCT for AML, M4...the countown begins!
    KyGuy Registered Users
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    Are you telling us that your biggest problem is the boys' fighting.  If so, that's great!  Once when my boys were fighting I told them that I didn't care what they did as long as they didn't get blood on the carpet.  The fight ended as soon as I said that.  Then they complained to each other that i was more concerned about the carpet than I was about them...... worked like a charm.

     

    Take care,

    Kelly

  • 324. Re: Dan's Autologous SCT for AML, M4...the countown begins!
    Tex Registered Users
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    There is a period where children and puppies have much in common.  Our pups have toys all over the floor.  Not thinking it would work but willing to cross our fingers and wish, we even bought them identical toys.  They still fight over the one the other has.  And more often than not, they're as happy or happier tearing up a plastic bag.  That's the puppy equivalent of playing with the box the toy comes in.

     

    I think it passes over time with kids.  Dogs never seem to learn.

     

    Glad Dan's doing well.  Wasn't he having some issues with his feet or am I confused?  Well, I'm confused but am I also confused about this particular thing?

     

    Best wishes with your growing and active family.

  • 325. Re: Dan's Autologous SCT for AML, M4...the countown begins!
    danswife Registered Users
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    It's been about a year since Dan was admitted for conditioning chemo/autologous sct.  I know that I started this post a year ago tomorrow & conditioning chemo started 5/11/2010.  His actual *new birthday* is on 5/18.  I just wanted to stop by with his latest counts.  We do labs every other month, but last month Dan's local oncologist saw a plt decrease from 161k to 149k...she wasn't really concerned since that's still pretty good...just wanted to make sure everything was still a-ok.  Friday's counts were:

     

    WBC 7.3...hasn't really been above 4 since transplant

    Hgb 13...it's been fluctuating by a point for a few months 13, 14

    Plt 156k...so they did come back up a bit

     

    I think June is a UMMC appointment, so maybe we can take our crew to the Nat'l Aquarium in Baltimore.  Our little guys have never been there and our big kids love the trip.

     

    I know that Dan had taken a pretty vigorous bike ride prior to blood draw.  He rode 21 miles of some pretty hilly road.  He has a personal goal this year of riding a total of 100,000 ft. elevation.  So far, at about 17-21 miles a ride, he has achieved over 24,000 ft. in elevation...most of that was in the month of April & beginning of May (in between ridiculous amounts of rainfall this year)

  • 326. Re: Dan's Autologous SCT for AML, M4...the countown begins!
    Tex Registered Users
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    I'm completely lost on how you figure elevation for bike rides and, as 24k is getting near the hieght of Everest, I've got to think you're talking about something entirely different than I'm understanding.

     

    Still, it's nice to have a couple of good reports to starte the day.  I'm glad things continue to go so well.  I'm sure you've seen us write that PLT are infamously flaky.  Heck, I'm always happy when they're over 100 these days.

     

    Congrats on the upcoming anniversary.

     

    Blessings

  • 327. Re: Dan's Autologous SCT for AML, M4...the countown begins!
    danswife Registered Users
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    Tex,

     

    Dan rides approx 20 miles each time he goes out to ride.  He may climb 2,000 feet in elevation per ride.  He is adding all of his "climbs" together to reach a total yearly elevation of 100,000 feet.

  • 328. Re: Dan's Autologous SCT for AML, M4...the countown begins!
    Tex Registered Users
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    Ah.  I get it.

     

    Now I forget where ya'll live.  I don't think I could go up 2k in many 20 mile stretches around here and I live in the Rockies.  Of course, there are places where you can go up 2k in a few blocks.  That's what my Jeep's for.

  • 329. Re: Dan's Autologous SCT for AML, M4...the countown begins!
    danswife Registered Users
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    Tex,

     

    We are in WV.  If you look at a map of Maryland, go to the western part of MD and drop down a few miles into WV.  Dan & his cycling friends often do road rides in MD, WV, and PA.  We are surrounded by hills and mountains...so they usually take the lesser traveled state routes to ride.   When they mountain bike, it's usually smaller rides w/ more challenging terrain...um, and stupid tricks (like riding over picnic tables & stuff).

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