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#51
Thu Oct 24, 2013, 11:25 PM
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Wonderful news, Whizbang! All the very best for continuing success.
__________________
Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. Watch and wait from Feb 2012. IVIg 5-weekly. New diagnosis Oct 2019 AML 23% blasts in marrow, 10% blasts in peripheral blood. 
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#52
Fri Oct 25, 2013, 08:37 AM
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Great news, Dave! Hang tough! How are you able to have a banana? Doug was put off of all fresh fruits and vegetables months ago.
He is having a very difficult time eating Day +18. He is doing better on liquids, but nothing tastes good to him now. I keep telling him that he is eating for nutrition at this point, not flavor  So I keep trying to get creative in my cooking.Take care. Deb
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#53
Fri Oct 25, 2013, 12:23 PM
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Hi, I just read your post and had to respond. I was diagnosed with MDS at the age of 47. I also had multiple chromosome abnormalities, including 5q- and Monosomy 7. My counts were stable for two years and then they began to decline so we went ahead with a stem-cell transplant. I only have one half-brother, so we went to a donor search. I had four matches and the donor they chose was a 48-year old male from Germany. You are very fortunate to have five siblings, one of which is a perfect match.
I also have three daughters and my youngest was 14 at the time I was diagnosed so I know how you feel. There is hope and I wish you the best on your journey! Feel free to message me any time. Hugs and prayers! Jill
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Jill, 58 y/o female dx with MDS-U June 2008, IPSS:Int. 2. Allogeneic SCT May 25, 2010. Relapsed January 2011. Started Vidaza (azacitadine) Feb. 2011; Currently on cycle #58  , IV, 5-days every six weeks. WBC 5.3, Hgb 13.0, PLT 110 (2/16/18)
Last edited by Jill2008 : Fri Oct 25, 2013 at 12:35 PM.
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#54
Fri Oct 25, 2013, 01:06 PM
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Dave, You're doing great! Keep up the good work.
Your WBC's are higher than I've seen them! Keep eating. Don't give the staff a hard time, and don't knock anyone over or disconnect any wires when you take your 1 mile laps.
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#55
Fri Oct 25, 2013, 05:45 PM
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Dave
Hi - Your counts look great - happy to hear you are doing good - glad you are eating some and hang in there - Best to you - I'll be following you all shortly .
__________________
Susan Patient, 58, MDS, UPDATED 9/13 Now have RAEB-2, Firbrosis 3+, blasts 18% peripheral, 10 - 14% blasts marrow, chromosomes now T 1:21, trisonomy 16 and 1.- Match found ---10/10 -couldn't believe when I heard - Tentative day is 1/09th!!!! Admit date changed to 11/12. WOW -
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#56
Mon Oct 28, 2013, 10:22 PM
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One more cytoxin, and one more rabbit ATF, tomorrow is d-2.... My brother gave 9 million stem cells in one sitting, they only need 6 million...
God bless and be well...
__________________
Married, father of three daughters; now 46; diagnosed w/ Major form MDS 6/18/2013; had low counts across the board; Multiple chromosome abnormalities; Finished 2nd round Dacogen 9/13; SCT - Oct. 31, 2013; Sibling match 10/10 ; 5.5% blasts down to 3%, now 1% (post BMT)
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#57
Tue Oct 29, 2013, 08:18 AM
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Hang in there, Dave. I know that the Cytoxan is tough. The ATG is no party either. You are doing great to be responding and letting us know what is going on with you.
Prayers, hugs, and best wishes! Doug & Deb
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#58
Tue Oct 29, 2013, 12:01 PM
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You're doing great Dave!!!. Glad your posting it means your hanging in and on your way So..What happens to the 3 million extra stem cells? Does your Bro want them back?? Hang in there you're doing great. Keep posting!!
Steve
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#59
Wed Oct 30, 2013, 03:17 PM
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D-1 'day of rest'
Not quite, cytotoxin has given me hiccups (continuous) I get rid of them, they come right back...
Not so bad except for the terrible headache that comes with it... Oxy please.... This too shall pass, but I feel robbed of my day of rest.... God Bless...
__________________
Married, father of three daughters; now 46; diagnosed w/ Major form MDS 6/18/2013; had low counts across the board; Multiple chromosome abnormalities; Finished 2nd round Dacogen 9/13; SCT - Oct. 31, 2013; Sibling match 10/10 ; 5.5% blasts down to 3%, now 1% (post BMT)
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#61
Wed Oct 30, 2013, 06:33 PM
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Dave
Sorry you had a little problem - but best wishes on your day tomorrow -
__________________
Susan Patient, 58, MDS, UPDATED 9/13 Now have RAEB-2, Firbrosis 3+, blasts 18% peripheral, 10 - 14% blasts marrow, chromosomes now T 1:21, trisonomy 16 and 1.- Match found ---10/10 -couldn't believe when I heard - Tentative day is 1/09th!!!! Admit date changed to 11/12. WOW -
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#62
Wed Oct 30, 2013, 06:52 PM
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Dave,
Doug got robbed of that day of rest also. I think they put it in there just to mess with you! Best of luck tomorrow. We will all be thinking and praying for you. Please don't hesitate to ask for pain relief. I think sometimes Doug waited too long to tough it out. No heroics, please! Take care. Deb
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#63
Wed Oct 30, 2013, 07:15 PM
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Take the drugs Dave
I'm with Deb, take the good stuff as needed. I'd probably be asking for morphine drips and one of those hookahs(sp?) stuffed with hash or high grade weed to get me through it......
 .Keep posting!! Tomorrow is gonna be a great day for you. I know it.
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#64
Thu Oct 31, 2013, 06:39 AM
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Thinking of and praying for you Whizbang! I wish you a successful outcome with no GVHD!
__________________
Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. Watch and wait from Feb 2012. IVIg 5-weekly. New diagnosis Oct 2019 AML 23% blasts in marrow, 10% blasts in peripheral blood.
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#65
Thu Oct 31, 2013, 02:49 PM
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1:10 pm 10/31/2013
Stem cells were transplanted, closer to 10MM....!
Uneventful, hicups cooperated, but are back now... Best to all... God bless.
__________________
Married, father of three daughters; now 46; diagnosed w/ Major form MDS 6/18/2013; had low counts across the board; Multiple chromosome abnormalities; Finished 2nd round Dacogen 9/13; SCT - Oct. 31, 2013; Sibling match 10/10 ; 5.5% blasts down to 3%, now 1% (post BMT)
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#66
Thu Oct 31, 2013, 03:27 PM
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You're a new person! And from now on you get two birthdays every year.
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#67
Thu Oct 31, 2013, 03:34 PM
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Dave
HAPPY BIRTHDAY TO YOU!!! Hope you have smooth sailing. Hang in there.
__________________
MDS RAEB 2 w/excess blasts - 3+ Fibrosis - previous treatments ATG, Vidaza, Dacogen and Rituxan. Waiting to find my match - Susan
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#69
Thu Oct 31, 2013, 07:28 PM
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Yaaaay happy re Bday!
__________________
Heather, wife of Ronald 36; dx PNH 2012; Dx VSAA 2013; eculizumab(Solaris) hATG 2/20/13 cyclosporine 400 mg daily. 37 units RBC and 15 units of platelets. Post BMT -pentam,vorconizole,valtrex, valcyte, actigall, Pepcid , prograf, magnesium. 10/10 MUD 10/10/13 Now no PNH or AA. Mixed Chimerisim
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#72
Sat Nov 2, 2013, 11:05 AM
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D+2
PLTs dropped to 9, will have first transfusion...
Throat on fire, 3-4/10 pain, 7/10 if trying to swallow... (mucositis) Hiccups are continuous but not as bad... Hoping transfusion will add energy... Otherwise par for course.... Best to all, and God bless...
__________________
Married, father of three daughters; now 46; diagnosed w/ Major form MDS 6/18/2013; had low counts across the board; Multiple chromosome abnormalities; Finished 2nd round Dacogen 9/13; SCT - Oct. 31, 2013; Sibling match 10/10 ; 5.5% blasts down to 3%, now 1% (post BMT)
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#73
Sat Nov 2, 2013, 12:39 PM
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Keep up the good work
Glad your posting!!. Ya took the day off yesterday but that's o.k.
Its normal for your counts to goto near zero so please don't get fixated w/ the numbers they're gonna change every time they test it.. Hope your throat clears up soon, and the hiccups will go away soon. I would tell you to hold your breath for 5-6 minutes but I wouldn't want you to pass out Better days ahead! Hang in there.
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#74
Sat Nov 2, 2013, 01:26 PM
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Breathing into a 'new' non down pillow, helps kind of like breathing into a paper bag, but more gradual...
The build up of carbon dioxide does help to get rid if hiccups most of the time... I save this for when I need to go to sleep... Regards... Quote:
__________________
Married, father of three daughters; now 46; diagnosed w/ Major form MDS 6/18/2013; had low counts across the board; Multiple chromosome abnormalities; Finished 2nd round Dacogen 9/13; SCT - Oct. 31, 2013; Sibling match 10/10 ; 5.5% blasts down to 3%, now 1% (post BMT)
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#75
Sat Nov 2, 2013, 01:56 PM
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Dave
Good info to keep in mind--hope your throat gets better.. Hang in there ---
__________________
Susan Patient, 58, MDS, UPDATED 9/13 Now have RAEB-2, Firbrosis 3+, blasts 18% peripheral, 10 - 14% blasts marrow, chromosomes now T 1:21, trisonomy 16 and 1.- Match found ---10/10 -couldn't believe when I heard - Tentative day is 1/09th!!!! Admit date changed to 11/12. WOW -
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