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#127
Thu Nov 14, 2013, 11:38 AM
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you inspire others
You are an inspiration to others going through the fear and stress. Keep strong and positive.
Kathy
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Kathy,wife of 69 year old male with DX June 2013 with MDS= RAEB 2refractory with Extra Blast Very High Risk WBC 1.9-RBC 2.29-HGB 8.1-PLT 32-, as of Aug 2013:. BMB 12/4/13= WBC 5.57/RBC 4.86/HGB 15.5/HCT 42.8/RDW 49.6/PLT 188. 3% blast.BMB 4/11/14 WBC1.6,PLT12,RBC2.6,HGB9.2 
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#128
Thu Nov 14, 2013, 04:23 PM
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Dave,
Those are great numbers!!! I know that you are not feeling energetic, but save some strength to celebrate. That is good news! Doug is doing better also. He is eating and drinking more. He now lines up his juices for me to count  Kathy, What is happening with you??? Deb
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#129
Thu Nov 14, 2013, 09:04 PM
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Deb / Dave
Quote:
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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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#130
Fri Nov 15, 2013, 08:51 AM
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Susan,
Hang in there! Doug received blood and platelets off and on throughout his hospital stay. Don't know much about the antibodies thing. Someone smarter than I am can hopefully explain that to you. Keep resting, drinking, eating, and move when you can. Hugs. Deb
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#131
Fri Nov 15, 2013, 10:27 AM
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D+15 hanging in there
WBC's came in at 3.1 this morning (4.2-9.1 k/uL is Normal Range) with no Neupogen....
ANC were 2.0 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 7.7 and PLT's are 44 about the same... Creatine was same at 1.7, Potassium 4.3 and sodium at 143... My 8:00am 2 cans of chocolate Ensure stayed down today... Ate 2 little cartons of Frosted Flakes, with mini cartons of skim milk, and had half a philly cheese steak for dinner last night... Feeling ok, other than lack of energy due to low HGB... My right ankle is feeling better...
__________________
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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#133
Fri Nov 15, 2013, 04:07 PM
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To all
Glad Doug and Dave are doing good - keep it going - I am learning its not that easy. Red cross is looking for blood for me due to the anitbodies which makes it alittle harder. (?) Going to start my third day - starting with the Fludarabine then Idarubacin then Cytarabine - keeping fingers crossed - main issue is tired and constipated - getting softner (TMI - sorry) eating and drinking like I should - walked 3/4 mile but got pooped. Love to you all
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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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#134
Sat Nov 16, 2013, 09:43 AM
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D+16 looking good
WBC's stayed at 3.1 this morning (4.2-9.1 k/uL is Normal Range) with no Neupogen....
ANC were 2.4 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 8.2 and PLT's are 52 Had a B- transfusion 11/23 expiration. PLT's rose on their own... Creatine was lower at 1.6, Potassium 4.1 and sodium at 141... My 6:00am 2 cans of chocolate Ensure stayed down today... Ate 2 little cartons of Frosted Flakes, with mini cartons of skim milk, and had three chicken strips, sweet potato fries, Yukon gold potato soup for dinner last night... Feeling ok, other than lack of energy due to low HGB... Burst a blood vessel in my right eye but not too bad...
__________________
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 16, 2013 at 08:54 PM.
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#135
Sat Nov 16, 2013, 11:29 AM
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Numbers looking good! Glad you're eating. Why the transfusion today with numbers so good? Keep up the good work. Hope your mouth and throat are feeling better. How big were the chicken strips?
 .........j/k..Hang in there.
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#136
Sat Nov 16, 2013, 11:34 AM
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Quote:
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#137
Sat Nov 16, 2013, 11:43 AM
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Weird, I've had 5 RBC Transfusions, from 5 different donors, with out an issue... They do irradiate the blood and reduce it to only RBC's (but I believe that's typical)...
Hang in there Susan L, 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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#139
Sat Nov 16, 2013, 11:59 AM
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I'm a big guy, and it's not unusual at all (or so they've told me here)...
Not tall, 5' 7" but stocky... Entered the hospital at 197, and now at 177 (My bodies rock bottom weight)... I've been at 177 for 12 days now, 10 of those days, I only ate between 1,200 and 1,500 calories, and stayed exactly at the same weight... As for the number of transfusions, maybe how they process the blood (they only use their own blood supply and processing method), or maybe the T-cell depleted process, but the benefits TOTALLY out weigh the risks, in my case... 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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#140
Sat Nov 16, 2013, 07:28 PM
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Hi all -
On my last bag of chemo for the day - still didn't have transfusion but they came and cross matched me again - and we will see - Don't really understand the antibodies thing but said I need leuko reduced (normal) irradiated (normal) cmv neg - antibodies c e and k - I am O pos and they said they would go to O neg (universal donor if needed) with the same peramiters - so far no problems with chemo - guess it takes a while before situations comes up. Been tired that's all - but that's expected - Glad everyone is coming along - Dave did they say its normal to loss that weight? I put on 20 lbs from the prednisone and never have been able to take it off- wouldn't mind that side effect - (You know how us woman are hahaha) Have a good night all - God bless
__________________
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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#141
Sat Nov 16, 2013, 10:31 PM
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My husband lost 20lbs while in the hospital also. He's working on gaining it back bc he was already pretty thin
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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
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#142
Sun Nov 17, 2013, 08:27 AM
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D+17 Released to Hope Lodge
Well it came sooner rather than later, but I've been discharged to Hope Lodge NYC (Cancer.org):
http://www.cancer.org/treatment/supp...t-our-facility It's a free outpatient hotel (Similar to Ronald McDonald House) but for adults... I'm booked there through January 15th, 2014... Your allowed to leave here and there for visits, and visitors are allowed... I am incredibly impressed, it truly feels like we are staying at a 4 star hotel... They loaded me up Friday with an additional RBC transfusion (was at 7.7 HGB) taking me to 8.4 HGB... I have 4 appointments next week Monday thru Friday, and I kept my catheter in, for easy of transfusions (2 hours vs. 4 hours other wise)... I'm on four medications (pills), and separately will receive anti-fungal every other day thru IV as outpatient... Thank you all so much for your support and Prayers, 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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#143
Sun Nov 17, 2013, 09:44 AM
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Dave,
What great news to hear that you are released!!!! That is wonderful! Now is the time to "stay the course." Still be vigilant with cleanliness. Not too many visitors to begin with. And ALWAYS wear your mask when going out with people. It sounds like you are doing great. Keep up the fantastic work! Susan, Doug only lost one pound while in the hospital! Everyone was shocked at that what with all of the stomach issues and lack of appetite. BUT, he did lose 12 pounds the first week and a half that he was released. That was due to no appetite, difficulty drinking anything and keeping it down, and some various GI issues. Not to mention the meds suck liquid and nutrition out of you on a daily basis. He had been told to pack on a few pounds pre transplant which he did. We were both glad for that. He has now gained back about 5 pounds. Deb
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#144
Sun Nov 17, 2013, 12:01 PM
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Congrats!
Happy to see they sprung ya and your feeling good. I think you should have gotten a 5 star hotel with penthouse suite, chauffer, etc. but this looks pretty good. I hope you don't need the 2 months, and get home soon.
Very happy to see how far you've come in such a short time. Keep it up! and keep posting! Steve
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#145
Sun Nov 17, 2013, 01:21 PM
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Nice work, Dave!
This puts more responsibility on you to look after yourself and be aware of your condition. Be alert to changes in how you feel and any changing symptoms. Call the doctors if something concerns you between appointments. And relax and enjoy the peace and quiet!
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#146
Sun Nov 17, 2013, 04:41 PM
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Dave - How amazing for you
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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#147
Mon Nov 18, 2013, 03:44 AM
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Fantastic news again, Whizbang! I'm sure your positive attitude is helping too.
__________________
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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#148
Mon Nov 18, 2013, 04:09 PM
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Hi all
They finally found my blood with the 3 antigens needed and cmv neg and leuko reduced and irradiated - I a happy girl - had severe diarrhea thought I was gonna whatever. 11 times in 4 hours - but anyway - got a fever and then couldn't get blood till that went down - but with God walking at my side - fever went down - gonna get the 2nd unit and all will be fine. Hope everyone is doing great!!!
__________________
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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#149
Mon Nov 18, 2013, 04:43 PM
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Susan,
It sounds like they are really taking care of you and watching things carefully. Stay positive and do exactly what they say to do. I know the part you are going through right now is NO fun. But as everyone will tell you, this too shall pass. However, probably not as quickly as you would like  Hang in there! Deb
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#150
Mon Nov 18, 2013, 10:08 PM
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D+18 a little tired but otherwise well
Had my first outpatient visit to the hospital for eval and Microfungin (anti-fungal IV)
WBC's were at 3.4 this afternoon (4.2-9.1 k/uL is Normal Range) with no Neupogen.... ANC were 2.2 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 7.9 and PLT's are 91 no need for transfusion, PLT's rose on their own... Creatine was lower at 1.5, Potassium 4.2 and sodium at 138... Ate egg over hard, ham and swiss cheese sandwich for breakfast, two bags of oatmeal for lunch with a tall apple juice, grilled chicken and rice and black beans for Dinner... Feeling ok, other than lack of energy due to low HGB (felt more like 6.9 HGB today rather than the 7.9 I showed)... the burst blood vessel in my right eye hasn't really gotten any worse...
__________________
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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