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#51
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Wonderful news, Whizbang! All the very best for continuing success.
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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. |
#52
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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 |
#53
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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 11:35 AM. |
#54
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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. |
#55
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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 .
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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 - |
#56
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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...
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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) |
#57
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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 |
#58
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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 |
#59
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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...
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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) |
#60
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Hang in there! your doing great!!!
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#61
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Dave
Sorry you had a little problem - but best wishes on your day tomorrow -
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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 - |
#62
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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 |
#63
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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. |
#64
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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. |
#65
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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.
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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) |
#66
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You're a new person! And from now on you get two birthdays every year.
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#67
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Dave
HAPPY BIRTHDAY TO YOU!!! Hope you have smooth sailing. Hang in there.
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MDS RAEB 2 w/excess blasts - 3+ Fibrosis - previous treatments ATG, Vidaza, Dacogen and Rituxan. Waiting to find my match - Susan |
#68
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Congrats Dave!!
10 million!! Wow. The more the merrier. Enjoy your new stem cells and keep posting!! |
#69
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Yaaaay happy re Bday!
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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 |
#70
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It is great that you keep posting! You will ALWAYS remember your birthday. You definitely got treats and not tricks!
Prayer and best wishes. Deb |
#71
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I keep leaving the s off of prayers. You know that we are giving you more than one!
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#72
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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...
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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) |
#73
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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. |
#74
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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...
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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) |
#75
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Dave
Good info to keep in mind--hope your throat gets better.. Hang in there ---
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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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