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#151
Mon Nov 18, 2013, 10:28 PM
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Wonderful news to hear...
Whiz - Your sense of humour is outstanding "Ate egg over hard,"
 BTW eye blood vessel burst should slowly resolve/dissolve in a few days - I've had many and they always take care of themselves without any concern. Best wishes for continuing improvements! 
__________________
Ric: Low-risk MDS (blasts <4%); 4 cycles Revlimid no positive response; PRBC transfusion dependent; so far, 392'units' over 8 3/4 years; BMB #4 (15/04/01) shows evolution to AML (blasts 20-30%  ) 47,XY,del(5) (q22q35),+21[24][cp24]/46,XY(1).
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#152
Tue Nov 19, 2013, 10:01 AM
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Outstanding!!
Glad to hear your eating well and your counts are so good.
You know you've been thru a lot so its only natural that you'd be tired. You continue to amaze as you sail though your recovery. Hang tough!
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#153
Tue Nov 19, 2013, 06:57 PM
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Dave,
That is some awesome eating!!! Keep up that great work. All sounds good. Doug had a good report from the doctor today. He is at Day +42. Doctor is pleased with his progress despite being hospitalized a week and a half ago due to dehydration and other issues. We feel that we are on the road to good health. I can see that you are too!!! Deb
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#154
Wed Nov 20, 2013, 09:53 AM
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Dave Deb Doug
So proud of you all for how good you are doing - I am hanging in there - just getting over the side effects one at a time. Love to 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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#155
Wed Nov 20, 2013, 12:01 PM
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Still thinking of you and praying for the best for all you are going through. You are not along, we are all pulling for you. Blessings
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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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#156
Wed Nov 20, 2013, 04:23 PM
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D+20 things are looking up
Had my second outpatient visit to the hospital for eval and Microfungin (anti-fungal IV)
WBC's were at 4.3 this afternoon (4.2-9.1 k/uL is Normal Range) with no Neupogen.... ANC were 2.9 K/uL today Normal Range is 1.8-9.0 K/uL... HGB's rose to 8.3 and PLT's to 138 no need for transfusions, both rose on their own... Creatine was lower at 1.4, Potassium 4.2 and sodium at 140... Feeling ok, other than lack of energy due to lowish HGB Thank you all for your continued support, things are definitely headed in the right direction...
__________________
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 : Thu Nov 21, 2013 at 03:55 PM.
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#158
Thu Nov 21, 2013, 10:07 AM
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Great news Dave!
__________________
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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#159
Fri Nov 22, 2013, 04:34 PM
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Had my third outpatient visit to the hospital for eval and Microfungin (anti-fungal IV)
WBC's were at 4.8 this afternoon (4.2-9.1 k/uL is Normal Range) with no Neupogen.... ANC were 3.3 K/uL today Normal Range is 1.8-9.0 K/uL... HGB's relatively unchanged at 8.2 and PLT's to 157 no need for transfusions, both rose on their own... Creatine was lower at 1.3, Potassium 4.4 and sodium at 138... Feeling ok, other than lack of energy due to lowish HGB Thank you all for your continued support, things are definitely headed in the right direction...
__________________
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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#161
Fri Nov 22, 2013, 10:03 PM
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This morning, I had scrambled eggs with sliced ham and swiss, and a tall apple juice... This was after a 4 am Quik Choc milk, and a 7:30am choc ensure with my protonics (pro-biotic pill)...
Lunch I had vegetable soup and grilled chicken sandwich, can of apple juice and can of orange juice (provided by the hospital), they provide lunch if you are there before and after lunch... Had a banana and quesadilla right before dinner, then pasta alfredo with flank steak pretty well done... After dinner snack, had some salsa sunchips, and a half a glass of chocolate milk... Hate to deprive you of the signs of my improving appetite... :-)
__________________
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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#163
Mon Nov 25, 2013, 04:50 PM
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Had my fourth outpatient visit to the hospital for eval no more Microfungin (anti-fungal IV), now I'm on posaconazole (Noxafil)
WBC's were at 6.3 this afternoon (4.2-9.1 k/uL is Normal Range) with no Neupogen.... ANC were 4.5 K/uL today Normal Range is 1.8-9.0 K/uL... HGB's up to 8.6 and PLT's to 168 no need for transfusions, both rose on their own... Creatine was lower at 1.2, Potassium 4.5 and sodium at 137... Feeling ok, other than lack of energy due to lowish HGB Thank you all for your continued support, things are definitely headed in the right direction...
__________________
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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#164
Mon Nov 25, 2013, 06:04 PM
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Incredible
Your counts get better everyday. Very impressive. Remarkable really.
You have a lot to be thankful for. Keep up the good work. I expect your hair will start growing in a day or 2 and you'll be back to work before the end of the year just in time to get your 1099s and w-2s for tax time.. Way to go Whizbang!
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#165
Tue Nov 26, 2013, 05:50 AM
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Fantastic news. Your platelet and the white cell counts are to die for! I'm sure your positive attitude is helping heaps too. Well done!!
__________________
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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#166
Tue Nov 26, 2013, 11:09 AM
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Hi Dave,
So glad you are doing fabulously after SCT. Steven sent me your message. I get so confused on this site. I couldn't locate it. Yes my neighbor across the hall had a cord blood transplant at MSK and she is 69. She is doing well with a few bumps along the way..a far slower recovery than you..She told me as soon as I was diagnosed that I had to go to MSK for the transplant. Who is your doctor there? We live literally down the street from the hospital. I am not sure where you are staying but we would love to visit you if you are able to have visitors..and want them. My counts are low due to first Vidaza treatment...anc .3; platelets 21,000; rbc holding at 11.5. I start treatment again in two weeks.I am being treated by Dr. Roboz at NYP. She is a wonderful doctor and completely supports my decision to go to MSK for transplant. I am on the registry there and they have identified three potential donors. My prayers are with you to keep up your incredible recovery. Let me know if you want a visit. My email is abooth94@gmail.com and my phone number is 917-648-1382. Happy Thanksgiving..We can all be thankful for the progress made in medicine particularly in bone marrow and stem cell transplant. Dr. Girard says that 10 years ago he would not have even had a conversation with a patient age 55 or older. Now transplants are routine for people into their 70's. All the best, Alyse
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Alyse, dx AA Oct 2008, ATG+CSA; relapse May 2010; Campath trial Aug 2010; good counts 2011- Sept. 2013; then re-dx MDS borderline AML, Nov. 2013, Vidaza+Pracinostat trial; Jan 2014, considering chemo/transplant. Please donate blood and platelets.
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#167
Tue Nov 26, 2013, 11:10 AM
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Another great day of news!
__________________
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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#168
Fri Nov 29, 2013, 12:10 PM
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D+29 Hemoglobin on the rise
Had my fifth outpatient visit to the hospital for eval.
WBC's were at 7.1 this morning (4.2-9.1 k/uL is Normal Range) with no Neupogen.... ANC were 5.5 K/uL today Normal Range is 1.8-9.0 K/uL... HGB's up to 9.3 and PLT's down slightly to 153... Creatinine was relatively unchanged at 1.3, Potassium 3.9 and sodium at 138... Feeling ok, a little more energy, now that my HGB is in the 9's... Thank you all for your continued support, things are definitely headed in the right direction...
__________________
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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#170
Fri Nov 29, 2013, 11:56 PM
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Again, fantastic news - I'm so happy for you and your family! May your Hb keep nudging up!! The other numbers are just wonderful.
__________________
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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#171
Mon Dec 2, 2013, 07:24 PM
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D+32 BMB today
Had my sixth outpatient visit to the hospital for eval, and BMB / BMA...
WBC's were at 8.4 this morning (4.2-9.1 k/uL is Normal Range) with no Neupogen.... ANC were 6.2 K/uL today Normal Range is 1.8-9.0 K/uL... HGB's down slightly to 8.9 and PLT's up to 173... Creatinine was relatively unchanged at 1.3, Potassium 4.4 and sodium at 139... Feeling ok, a little more energy, now that my HGB is near 9... Thank you all for your continued support, things are definitely headed in the right direction...
__________________
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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#172
Mon Dec 2, 2013, 07:26 PM
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Glad to hear you're doing well! Fantastic news.
__________________
Karen, age 62, dx MDS RAEB-2 1/8/10: pancytopenia WBC 2.7k/Hgb 7.4/Hct 22.1/Plt 19k; complex cytogenetics -3,del(5)(q14q33),-6,+8,+mar,17% blasts. MUD BMT Johns Hopkins 11/30/10. Dx tongue cancer 8/31/12. ok now. blog mausmarrow.com
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#173
Fri Dec 6, 2013, 05:20 PM
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Had my seventh outpatient visit to the hospital for eval, and had my IV catheter removed (hickman line)...
WBC's were at 8.4 this afternoon (4.2-9.1 k/uL is Normal Range) with no Neupogen.... ANC were 6.5 K/uL today Normal Range is 1.8-9.0 K/uL... HGB's up slightly to 9.2 and PLT's down slightly to 144... Red Blood Cell (RBC) Count was 3.18 M/mcL (4.2-5.6 M/mcL is Normal Range) Creatinine was relatively unchanged at 1.3, Potassium 4.1 and sodium at 138... Feeling ok, a little more energy, now that my HGB is near 9... Thank you all for your continued support, things are definitely headed in the right direction...
__________________
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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#175
Fri Dec 6, 2013, 10:14 PM
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Deb,
I haven't had a transfusion in three weeks (11/16), and I was on anti-fungal IV three times a week, for the first week... But quickly switched to Noxafil (oral anti-fungal)... SO it was time to remove the catheter... I am very lucky, and things really have gone my way, I've gained 4 pounds since release, and aside from my unsettled stomach, no other real issues... I manage my unsettled stomach with lots of chocolate milk, I drink 1/2 a gallon a day, anytime my stomach feels twitchy - I drink half a glass, and it settles it right down... Even through the night... When I wake up around 6:30, I take a pepcidAC (my dr prescribed), that seems to help also... Counts continue to go up, but remember I'm young, perfect sibling match, and 100% remission before my BMT (my last pre-BMT cytogenetics report came back 100% clean), like Doug, I was in really good shape pre- transplant, although I feel like I'm a shadow of the person I was before the transplant (20 lbs. lighter), and half the muscle mass... Things will get better for you guys, and for me (and most of us)... I have no doubt, we just have to stay positive, the power of positive thought is infinite... Best Regards, David
__________________
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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