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  #251  
Old Tue Jul 8, 2014, 12:51 PM
Whizbang Whizbang is offline
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Location: Central NJ
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Started chemo last night...

Started 7+3 chemo, the standard for Leukemia treatment (including RBC/AML) Yesterday, otherwise feeling ok... No more pain attacks, HGB at 9.4 after a 1 unit transfusion on Sunday when I was admitted...

The chemo is harsher than Dacogen, so they want me loaded up... Platelets are 25 so I'll be getting a unit of those today...

All the Best, and may God Bless...
David
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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)
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  #252  
Old Wed Jul 9, 2014, 12:44 AM
bailie bailie is offline
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David, I am empty for adequate words. I am pulling for your progress and know that if anyone can regain control it would be you.
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age 70, dx RAEB-2 on 11-26-2013 w/11% blasts. 8 cycles Vidaza 3w/Revlimid. SCT 8/15/2014, relapsed@Day+210 (AML). Now(SCT-Day+1005). Prepping w/ 10 days Dacogen for DLI on 6/9/2017.
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  #253  
Old Wed Jul 9, 2014, 09:35 AM
sbk007 sbk007 is offline
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Dave, Sending prayers to you and wishing you well.
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  #254  
Old Wed Jul 9, 2014, 04:58 PM
Chad S Chad S is offline
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Whizbang,
So sorry to hear of this setback. We know you will pull through once again and will be praying for a speedy recovery.
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Chad, husband of Danielle age 39, diagnosed MDS (RAEB-1) Feb 2013, BMT May 2013
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  #255  
Old Wed Jul 9, 2014, 07:09 PM
Whizbang Whizbang is offline
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Thank you all for your support, I have no doubt things will turn out well, they caught this so quickly, everyone is quite optimistic about a good outcome...

I'm still young and strong, and ready to fight...

Day 3 of chemo, and all is well... except hiccups again...

The Best to all, and may God see us through....
David
(Bring out the pillow)...
__________________
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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  #256  
Old Wed Jul 9, 2014, 09:30 PM
Bhutt Bhutt is offline
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Wishing you all the best.Will keep you in our prayers.

Blair
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  #257  
Old Thu Jul 10, 2014, 12:40 PM
Whizbang Whizbang is offline
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D4 chemo

Had a 102 fever last night from the Daunorubicin (the 3 of the 7+3) chemo, quickly went down to 100.3 and then 99...

Still got antibiotics, chest X-ray, blood cultures... counts coming down slowly...

Cytarabine (the 7 of the 7+3) chemo is still giving me hiccups, but the pillow helps (breathing into a pillow will get rid of hiccups - carbon dioxide buildup)

Feeling pretty well considering...

All the Best, May God Bless us all...
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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  #258  
Old Thu Jul 17, 2014, 02:49 AM
Cheryl C Cheryl C is offline
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Hi Whiz. Shocked and sorry to hear about your recent episodes and subsequent forced reversion back to chemo. I will pray for you.

Re the reaction to IVIG infusions.... I have them every 4 weeks. The only time I've had a weird reaction was when the nurses ran it too fast. My blood pressure went up to 180 (normally around 95-105) and I had pre-migraine-like circles rotating around in front of me and lost my vision of anything else. Was on the point of fainting when I managed to attract the nurses' attention. Anything over 240 drops per min is too fast as it's a viscous fluid. I have 15 min on 60 dpm, then 15 min on 120 dpm, then it goes up to 240 dpm if there are no problems. I'm wondering what your regime for IVIG was?
Occasionally I have a minor headache the next day but usually not.

All the very best as you fight the battle again.
__________________
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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  #259  
Old Sun Aug 3, 2014, 12:05 PM
Whizbang Whizbang is offline
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Day 27 since the start of my chemo for RBC Leukemia, finally seeing some counts:
0.5 for WBC's (they were 0.3 for 9 days straight then 0.4 for 2 days)...
27 for PLT's (25, and 19 two days before that)...
7.2 for HGB (7.3, and 7.5 two days before that)...

Finally seeing some upward momentum, chemo was tougher on my counts than on me physically... RBC destruction has finally slowed to a trickle, and should turn the corner soon... WBC's and PLT's are rising on their own!!!

Once counts normalize, I should have another BMB, to determine whether or not I will have 2nd round of chemo or go straight to transplant...

Actually feeling pretty good considering my low HGB... I guess I'm getting used to lowish HGB...

Will hopefully make it home from the hospital for a few days either way, will be nice to be home after a month in a hospital bed...

All the Best to everyone, and may God Bless us ALL!!!
__________________
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 Aug 3, 2014 at 10:23 PM. Reason: edit
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  #260  
Old Sun Aug 3, 2014, 08:09 PM
sbk007 sbk007 is offline
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Thanks for the update Dave. Good to hear you're moving in the right direction and you're feeling pretty good. Hoping you can forgo any more chemo and go straight to transplant.
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  #261  
Old Mon Aug 4, 2014, 05:07 PM
DanL DanL is offline
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Great update Dave! I hope you get the few days of rest at home before moving to transplant. There's no place like home.
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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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  #262  
Old Tue Aug 5, 2014, 07:44 PM
Whizbang Whizbang is offline
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29 Days since start of chemo

WBC's rose to 0.7 (0.6 Yesterday) ANC still zero, but Dr. sees precursors in blood...

PLT's rose to 43 (37 Yesterday)

HGB at 7.4 (6.7 Yesterday so I got a RBC Transfusion)

Feeling very well, waiting for my counts to spike up so I can go home for a few days...

Saw the Doctor today, she scheduled me for a follow up Bone Marrow Biopsy for next Wednesday, to determine next course of action (2 round of chemo or straight to 2nd transplant)...

All the Best, and may God Bless us ALL!!! (We all need it in some way)

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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  #263  
Old Tue Aug 5, 2014, 09:32 PM
bailie bailie is offline
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David,
I really like hearing improving numbers for you. I appreciate all the information you have shared. Thank you.
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age 70, dx RAEB-2 on 11-26-2013 w/11% blasts. 8 cycles Vidaza 3w/Revlimid. SCT 8/15/2014, relapsed@Day+210 (AML). Now(SCT-Day+1005). Prepping w/ 10 days Dacogen for DLI on 6/9/2017.
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  #264  
Old Wed Aug 6, 2014, 05:19 PM
Whizbang Whizbang is offline
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30 days since start of Chemo

WBC's rose to 0.9 (0.7 Yesterday) ANC hit 0.1 (need 0.5 to go home)
PLT's rose to 56 (43 Yesterday)
HGB up to 7.6 (7.4 Yesterday with no Transfusion)

Still feeling very well, ready to go home for a few days...

All the Best, and may God Bless us ALL!!!
__________________
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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  #265  
Old Wed Aug 6, 2014, 05:23 PM
sbk007 sbk007 is offline
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David,
Great to hear you're feeling good.
Now get the anc over .5 and go home!!
Hope that happens very soon..like today!! - take care
Steve
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  #266  
Old Sun Aug 10, 2014, 04:10 PM
Whizbang Whizbang is offline
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35 days in Hospital and counting

WBC's rose to 1.2 (1.1 Yesterday) ANC hit 0.4 today (need 0.5 to go home)
PLT's rose to 89 (80 Yesterday)
HGB up to 8.6 (8.5 Yesterday)

Still feeling very well, ready to go home (Hopefully tomorrow) for a week or two, 2nd transplant tentatively moved to mid September...

ANC had hit 0.3 a few days ago, but fell to 0.2 for two days before going to 0.4 this morning... Blood counts have been very stubborn but generally are on the rise....

All the Best, and may God Bless us ALL!!!
__________________
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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  #267  
Old Sun Aug 10, 2014, 05:25 PM
sbk007 sbk007 is offline
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Hope you get out of there soon. I can imagine you're anxious to get out of there already. Looks like your moving in the right direction. Hope you can go home tomorrow.
Take Care
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  #268  
Old Mon Aug 11, 2014, 11:05 AM
Whizbang Whizbang is offline
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ANC = 0.5!!!!

Going home for some well deserved family time...
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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)
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  #269  
Old Mon Aug 11, 2014, 01:23 PM
DanL DanL is offline
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Woo Hoo!
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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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  #270  
Old Mon Aug 11, 2014, 04:20 PM
sbk007 sbk007 is offline
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My sentiments exactly

With the WOOO HOOO. Great News!!
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  #271  
Old Mon Aug 11, 2014, 08:10 PM
johnwc johnwc is offline
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fabulous

really happy for you.
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John, 68, Portland, Or. Dx with CMML on 12/1/2013, 3 days before admission for SCT, blasts went to 23%, AML. Did 7+3 chemo regimen. The chemo worked and blasts are 1% and did BMT on 1/1/15.- 12/2/15, ongoing GVHD in eyes. Lung fungus and Bronchiolitis Obliterans (BO).
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  #272  
Old Tue Aug 12, 2014, 07:23 AM
Cheryl C Cheryl C is offline
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Enjoy! So pleased that you have made it home again. You are an inspiration to all of us. God bless.
__________________
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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  #273  
Old Tue Aug 12, 2014, 07:38 AM
SLB SLB is offline
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Great news... Enjoy your time at home!!
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Sharnie, 37yo, dx Mar 2012 RAEB II 13% blasts. 8 months of Vidaza. Transformed to AML in Nov 2012, induction chemo, no remission. 2nd lot of chemo, remission achieved. SCT with 8/10 match, Mar 2013.
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  #274  
Old Tue Aug 12, 2014, 02:26 PM
Birgitta-A Birgitta-A is offline
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Neutrophils

Hi Whizbang,
Congratulations! Take care!
Kind regards
Birgitta-A
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  #275  
Old Tue Aug 12, 2014, 02:42 PM
Bhutt Bhutt is offline
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Great news. No place like home.

Blair
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