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#1
Wed Aug 20, 2014, 06:57 PM
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Day 5 and I'm on my way (SCT)
I am at Day plus 5 and it is interesting. The Fludarbine (Day-4) was fine the first couple of days and then it hit hard in Days -2,-1 when combined with Melphalan. Since Day 0 (with addition of Methotrexate), I leveled off. It is a struggle to eat and drink in sufficient quantities. If I can maintain this feeling for about 10 more days, I will be happy.
I was walking 5 miles a day for Day -4, Day -3 then that came to a screeching halt. I do not have a lot of strength as my numbers drop. My chemo regimen is "middle of the road" from what I have been told. I did not have any radiation. I should be in the hospital for another two weeks depending on my numbers. I have greatly drawn on the information many of you have previously shared, and I thank you for that. I wish all of you steady improvement.
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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. Last edited by bailie : Sun Oct 30, 2016 at 03:34 PM. 
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#2
Wed Aug 20, 2014, 07:25 PM
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It's no surprise that your strength faded, but it sounds like you are doing well overall so far. We've got our fingers crossed for you and we'll help you watch your white count and ANC most closely.
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#4
Wed Aug 20, 2014, 09:46 PM
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It sounds to me like you are doing quite well. Try to keep walking if you can. My husband tried to walk even when he didn't feel like it. It was something he had control over and there weren't many things that you had control of . Keep on doing all the right things, and those two weeks will soon pass.
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#5
Wed Aug 20, 2014, 11:15 PM
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So wonderful to hear how you are doing bailie, Our prayers are with you that God continues to give you the strength that you need to get through the hard time . Looking forward to hearing more on how you are doing .
We will be next !! Love and prayers Sue and Amy
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Mother of a daughter 27 with MDS . Cognitively delayed at birth 1987 , seizures 5 days old . pancytopenia 2006, AIHA 2013, EVANS 2013 , CVID 2013, ALPS 2014. MDS 2014 8/18/2014 WBC .3 , hemoglobin 7.3 , hematocrit 2, platelets 60 , neutrophil .21 Mag 1.6, Potassium 4.6
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#6
Thu Aug 21, 2014, 12:09 PM
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bailie,
Walking is hard during these few days, try and at least get up a few times during the day... In 5-7 more days, you'll start seeing your counts coming up, and you will have the inspiration you need... Stay positive, even if not active, it will help with your recovery... All the Best!!! 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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#7
Thu Aug 21, 2014, 01:27 PM
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Bailie,
It sounds like you are doing quite well. As Dave said, get up and move around as much as you comfortably can without wearing yourself down too much. Once your white blood counts start to pick back up, the energy comes back with them. Eating and drinking is all about will power at this point, so find something you like and go with it. For me, it was peanut butter and chocolate - two things that I almost never ate prior to transplant. I also ate a lot of green chili because it tasted good, which is not generally advised due to the spice level.
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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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#8
Thu Aug 21, 2014, 03:09 PM
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Great news Baillie, hope you continue to do well!!
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Mother age 79, dx MDS RCMD low risk del 20q April 2013, no response to EPO, Danazol. pRBC tx dependent - 2 units every 3-4 weeks, exjade Dec 2013 - Mar2014, restarted Dec 2014
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#9
Thu Aug 21, 2014, 10:35 PM
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Oh, brother, am I relieved to hear from you. No word since your last email and knew you were "in it" and so happy to hear you are alive and still kicking. Keep up the posts.
John in Portland,,, probably 2 months behind 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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#10
Thu Aug 21, 2014, 10:43 PM
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Bailie,
I lived on 3 small chocolate milks and 3 small cans of ensure each day (during transplant) for at least 10 days; as DanL said, find what works for you... This too shall pass. May God Bless... 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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#11
Fri Aug 22, 2014, 05:53 AM
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SCT
Congratulations bailie!!!
Kind regards Birgitta-A
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#13
Wed Aug 27, 2014, 06:25 PM
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Bailie
How are your numbers?? Love to hear from you. JOHN
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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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#14
Wed Aug 27, 2014, 08:27 PM
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I appreciate the comments. My numbers are interesting and almost textbook at this time (Day +12). "Whites" bottomed out at Day 5 and have increased steadily. "Reds" have maintained at about 3.5. Platelets got down to 10 before bouncing upwards.
I have lost taste for almost every kind of food, so that is difficult. Not much energy now.
__________________
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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#15
Wed Aug 27, 2014, 09:22 PM
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See what kind of shakes you can get, and possibly ensures, you need to keep up some calorie intake, it will help keep/get you numbers up...
Sometimes liquid intake is easier to stomach than solid foods... Keep up the good work, your almost there... Keep it positive (I know it maybe hard), you'll be looking back very soon and feeling/eating really well..... All the best, and may God Bless!!! Quote:
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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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#17
Thu Aug 28, 2014, 03:01 PM
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Quote:
I am at day 55. They are pleased with my progress my numbers improving but are not consistently in range. They are talking about letting me go home at day 80. Energy level very slowly improving with ups and downs. Some of the energy drinks taste better than others so try a different ones to find one you can drink. Exercise is important. I do some every day. Ray
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#18
Wed Sep 10, 2014, 10:21 AM
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Well, it is Day 26 and I'm feeling fine. Taste is maintaining. It helped when I did a major scraping of my tongue. I am eating fine. Numbers (whites, reds and platelets) close to normal range. Energy level is good. Getting daily drips of magnesium at home. Naturally since this is not a linear recovery the future is hard to predict, but hoping for the uneventful.
__________________
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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#19
Wed Sep 10, 2014, 11:04 PM
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Dude, you thrill me every time you post and especially when the news is good. Yes, expect a rocky road but I think you are doing great.
JOHN
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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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#20
Thu Sep 11, 2014, 07:17 AM
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Your path results look great Baillie. I'm sure your positive attitude is contributing to your success. 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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#21
Thu Sep 18, 2014, 11:12 PM
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Day 30 bone marrow biopsy showed 100 percent donor which doctor thought was great. Whites at 7.26, neutrophils at 4.7, reds at 3.73 and platelets at 205. Long way to go and waiting for GVHD. Feeling pretty good except when they load me up on magnesium.
__________________
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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#22
Fri Sep 19, 2014, 12:39 AM
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GVHD, we don't need no stinkin' GVHD....!
bailie, glad to hear that things are looking (really) good... Hope everything continues in the right direction... WBC 0.7 & ANC 0.1 for me, will be going home soon... for another 10/31 transplant... All the Best, and may 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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#23
Fri Sep 19, 2014, 01:13 AM
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bailie,
We are following right behind you Oct 1 2014 starts Chemo 7th day BMT prayers to you bailie... God bless all of you new friends Sue and Amy
__________________
Mother of a daughter 27 with MDS . Cognitively delayed at birth 1987 , seizures 5 days old . pancytopenia 2006, AIHA 2013, EVANS 2013 , CVID 2013, ALPS 2014. MDS 2014 8/18/2014 WBC .3 , hemoglobin 7.3 , hematocrit 2, platelets 60 , neutrophil .21 Mag 1.6, Potassium 4.6
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#24
Tue Oct 7, 2014, 11:05 PM
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I am at Day 53 and everything seems fine. Blood counts almost all normal with platelets steady at 190 and 100 percent donor. Just got the gene mutation report from last BMB (Day +30) and I am clear of any mutations. Sense of taste has returned. No GVHD so far. I realize it is still very early and many things can/will happen later, but I'm giving it my best. It has been an interesting experience.
__________________
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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#25
Wed Oct 8, 2014, 06:22 AM
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Great news again, Baillie! Love your attitude.
__________________
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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