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#101
Fri Nov 8, 2013, 08:50 PM
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I hope you start feeling better soon, hang in there.
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Tom- 62 yrs old, dx-eosinophilic fasciitis 2004, 1 yr prednisone resolves EF- now low counts, HGB has been ok... EF has been associated with MDS along with AA. 
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#102
Fri Nov 8, 2013, 09:58 PM
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How are you my dear friend?
Dave,
I just wanted to let you that Irene and I are always thinking about you. I know you might some bad days, but think about the stupid things we did these past couple of years...like playing softball...LMAOO!!! Going to Kat-Shack during work night!!! Playing Skyrim for 30 days straight!!! LOL Let us know how you are doing and let me know when you can talk on the phone...so call me soon!!! Your Friend, Conrad
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#103
Sat Nov 9, 2013, 12:13 AM
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All,
Don't want you guys to think I'm feeling down or something, because I'm not, if you'd know me, that just isn't me... I will admit I am in a sort of robot state right now (the facts mam, and only the facts...) It's hard to really stay cheery while going through this, but I am not letting it get me down, nor letting it discourage me.... So Creatine is slowly making it's way down from it's high, but still very elevated (I'm trying to drink more water, even though it hurts the most)... Platelets made 8 during the middle of the day so I got more today (4th), AB+ expiring 11/10/2013.... Also got my second Neupogen shot today... Otherwise feeling fine, and Morphine takes the edge off... here's my open Caringbridge page: http://www.caringbridge.org/visit/davidvelasco/mystory God Bless and be well, welcome our newest fan Conrad...
__________________
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)
Last edited by Whizbang : Sat Nov 9, 2013 at 02:15 PM. Reason: correct
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#104
Sat Nov 9, 2013, 07:52 AM
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Dave
Quote:
__________________
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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#105
Sat Nov 9, 2013, 08:43 AM
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Wbc = 0.2 !!!!!!
WOOOO HOOOO!!!!! at D + 9!!!!
After all these days of waiting my WBC's came in (Albeit small)... Great to see after all these days at WBC <= .01 Creatine came back at 2.2 continuing to fall, although still high... Potassium at 4.6 also continuing to fall, now slightly elevated... HGB at 7.0, and PLTs 23, so no transfusions today... 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)
Last edited by Whizbang : Sat Nov 9, 2013 at 02:14 PM. Reason: D+9
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#107
Sat Nov 9, 2013, 11:01 AM
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Quote:
 .Patience my friend and in a short time this will all be behind you. Continued progress as you beat the piss out of this disease. Keep Posting!!! Steve
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#108
Sat Nov 9, 2013, 11:08 AM
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My wife and I had the same WOOOO HOOOO!!!!! reaction to her first new white cells. It's the moment when you realize the transplant is actually working and you really do have a new immune system. Congratulations!
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#110
Sun Nov 10, 2013, 12:35 AM
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Dave,
It is really great that you have some neutrophils, I can only imagine how exciting that must be. Keep going strong. Dan
__________________
MDS RCMD w/grade 2-3 fibrosis. Allo-MUD Feb 26, 2014. Relapsed August 2014. Free and clear of MDS since November 2014 after treatment with Vidaza and Rituxan. Experiencing autoimmune attack on CNS thought to be GVHD, some gut, skin and ocular cGVHD. Neuropathy over 80% of body.
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#111
Sun Nov 10, 2013, 08:33 AM
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Doug--
Quote:
__________________
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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#112
Sun Nov 10, 2013, 09:15 AM
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D+10
WBC's came in at 0.9 this morning.... ANC was 0.7 (WOOO HOOO again)...
HGB's at 6.8 so will get 4th transfusion with 11/19 expiration date... Creatine was still 2.2, Potassium 4.7 and sodium at 147 (a little high)... My 6:00am chocolate milk used my stomach as a trampoline, with no nausea warning, but made it to the toilet... Feeling ok, other than lack of energy due to low HGB... 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)
Last edited by Whizbang : Sun Nov 10, 2013 at 12:58 PM. Reason: HGB
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#113
Sun Nov 10, 2013, 10:33 AM
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Way to go Dave
Congrats on the nearing 1 w/the WBC!!! moving in the right direction. Those
other numbers will normalize as you begin to drink and of course the "squirts" will subside when you can take in some solids. I'm happy you made it to the bathroom, that's always a good sign... Glad your feeling o.k.. Once your HGB comes up you'll have more energy. You're doing great! Keep up the good work. When in doubt hit the morphine button...
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#114
Mon Nov 11, 2013, 08:38 AM
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D+11 Coming out of the woods
WBC's came in at 3.2 this morning.... ANC were 2.5 (WOOO HOOO again)...
HGB's at 7.4, and PLT's are 13 so no transfusions today... Creatine was lower at 2.0, Potassium 4.6 and sodium at 146 (a little high)... My 8:00am chocolate milk used my stomach as a trampoline again, with no nausea warning, but made it to the toilet... Feeling ok, other than lack of energy due to low HGB... They handed me two pamphlets today: Low Microbial Diet Returning Home after your Allogeneic Transplant... Although I don't anticipate being discharged until 11/22 at the earliest... 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)
Last edited by Whizbang : Mon Nov 11, 2013 at 10:30 AM. Reason: ANC came in...
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#115
Mon Nov 11, 2013, 10:24 AM
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3.2!!! Great news Dave!
Glad to hear your on the mend. WBCs nearing normal, HGB on the up that's a big turnaround from where you were a couple days ago. Hope your throat is feeling better. Those are great pamphlets to be receiving, especially the going home pamphlet, maybe they want to kick you out early.
Keep up the good work!!! Keep posting!! Happy Veterans day. Last edited by sbk007 : Mon Nov 11, 2013 at 10:25 AM. Reason: .
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#116
Mon Nov 11, 2013, 03:59 PM
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Dave
Quote:
__________________
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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#118
Tue Nov 12, 2013, 03:41 AM
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I'm the opposite, I can tolerate the Ensures, but hate anything water related...
I'm drinking 3 Choc Ensure, and 3 - 130 Calorie chocolate milks per day, for 1,150 calories and 48 ounces... I need to incorporate 1 - 16.9 ounce water into my daily intake, so my wife is bringing me 4 Mio flavor additives (flavored water additive): Peach Tea Peach Mango Strawberry Watermelon Pomegranate Berry We have used Mio's in the past while dieting to increase water intake, a few drops flavors an entire bottle, and make it more palatable... Right now water tastes metallic / tinny to me... 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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#119
Tue Nov 12, 2013, 08:45 AM
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D+12 - No Neupogen nor Transfusions
WBC's came in at 5.5 this morning (4.2-9.1 k/uL is Normal Range)....
ANC were 4.2 K/uL today Normal Range is 1.8-9.0 K/uL... (Absolute Neutrophil Count - ANC is a type of white blood cell, and indicates your ability to fight infections) HGB's at 7.8, and PLT's are 24 Rising by themselves with no Transfusions... Creatine was lower at 1.9, Potassium 4.2 and sodium at 148 (a little high)... My 8:00am chocolate milk used my stomach as a trampoline again, with no nausea warning, but made it to the toilet... Feeling ok, other than lack of energy due to low HGB...
__________________
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)
Last edited by Whizbang : Tue Nov 12, 2013 at 05:40 PM. Reason: update counts
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#120
Tue Nov 12, 2013, 09:06 AM
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Dave,
That sounds great except for the chocolate milk thing. Doug does not like anything "fruity" so the flavored waters won't work. He does keep drinking regular water. Also orange juice spritzers mixed with gingerale. He sometimes puts gingerale in the Ensures. He does tolerate the apple and mixed berry flavors of those. How the "berry" would be different, I don't understand. But his taste buds are so messed up right now! Sounds like your numbers are going in the right direction. Also it sounds like you are doing great on your calorie intake. Doug really needs to work on that. Keep on "keepin" on! Deb
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#122
Wed Nov 13, 2013, 08:40 AM
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D+13 - Unlucky, bump in the road
WBC's came in at 3.9 this morning (4.2-9.1 k/uL is Normal Range)....
ANC were 2.8 K/uL today Normal Range is 1.8-9.0 K/uL... (Absolute Neutrophil Count - ANC is a type of white blood cell, and indicates your ability to fight infections) HGB's at 6.5, and PLT's are 25 Rising but will need RBC Transfusion (B-, 11/22/13 Expiration)... Creatine was lower at 1.8, Potassium 4.1 and sodium at 145 (a little high)... My 8:00am chocolate milk stayed down today... Feeling ok, other than lack of energy due to low HGB... Small arthritic response in my right ankle, which is a common bi-annual event for the last 12 years, and not likely due to my SCT...
__________________
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)
Last edited by Whizbang : Wed Nov 13, 2013 at 11:53 AM. Reason: update
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#123
Wed Nov 13, 2013, 10:31 AM
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Youre doing great!
Good to hear you held the milk down, that's great news.
Your counts are going to bounce around, don't let it get you down you'll drive yourself nuts.. 3.9 is a long way from where you were 3 days ago at 0. You've come a long way in a short time. Hope your feeling better.
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#124
Wed Nov 13, 2013, 06:14 PM
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Dave,
SBK is right. Your counts are going to jump around all over the place. We drive ourselves nuts by these numbers that we live and die for. Doug's creatinine is finally settling down. Although he did get another bag of fluids today. Hg is hanging at 12. Platelets are down around 51. They had been as high as 300. Hang in there. Steady is the course. I keep getting guff and looks when I mention food and drink. It is important and I am not one to give up. Keep your eye on the prize. Prayers with you. Deb
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#125
Thu Nov 14, 2013, 09:06 AM
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D+14 Things looking up
WBC's came in at 4.6 this morning (4.2-9.1 k/uL is Normal Range) with no Neupogen....
ANC were 3.1 K/uL today Normal Range is 1.8-9.0 K/uL... (Absolute Neutrophil Count - ANC is a type of white blood cell, and indicates your ability to fight infections) HGB's at 8.4, and PLT's are 45 Rising no need for transfusions today... Creatine was lower at 1.7, Potassium 4.3 and sodium at 142... My 6:00am chocolate milk stayed down today... Ate 2 little cartons of Frosted Flakes, with mini cartons of skim milk, and had some orange-pineapple juice... Feeling ok, other than lack of energy due to low HGB... Still have small arthritic response in my right ankle, which is a common bi-annual event for the last 12 years, and not likely due to my SCT...
__________________
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)
Last edited by Whizbang : Fri Nov 15, 2013 at 07:31 AM.
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