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#1
Sun Jun 14, 2015, 11:32 PM
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Back in hospital yet again!
Had bad stomach pains starting on Tuesday that never let up. Also had a temperature that would go up to a little over 100, but would go down with Tylenol. Finally had my husband take me to ER yet again on Friday. Only worked 1 day last week when I had shaking chills and 101 temperature Did all the bacterial cultures still waiting for something to grow. Being treated with antibiotics while waiting.
Was worried they might have to do a resection of the colon and have a colostomy bag, but so far that is on hold. Had to have a transfusion yesterday which made me feel a lot better. Finally got clear liquids today. I don't want to think about how much weight I have lost. If nothing bacterial grows by tomorrow they are calling in an infection specialist. Of course my daughter graduates from high school on Wednesday which I may miss. I was supposed to start chemo again this week. I am so frustrated because I was pretty healthy before chemo started. The hematologist said they are thinking about a neupogen shot but explained it could push me into AML. Would appreciate any prayers or good thoughts.
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Tracey, mom & wife,age 58, dx MDS RAEB-2 4/15, normal cytogenetics, Update: SCT cancelled. Blasts at 67%. New dx AML. 
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#2
Mon Jun 15, 2015, 12:01 PM
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Prayers and hugs going your way!! You can beat this!! Keep us updated
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Daughter of father diagnosed with MDS RAEB-II intermediate risk due to normal cytogenetics. Blasts at 13% peripheral blood at diagnosis with no cytopenias. 6 cycles on Vidaza then on to SCT at Duke. BMT from my brother and now showing signs of relapse. DLI in the works.
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#3
Mon Jun 15, 2015, 12:37 PM
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Hang in there Tracey. If you can push on getting the infectious disease person involved earlier, I think that would be a good idea. I have had great luck with my infectious disease guy the two times that we have needed him. They seem to get results in relative short order, which helps you recover and have confidence in the process.
Also, typically the first couple of cycles of chemo are the hardest on you, so you should get stronger as they progress. It also helps when you know what to expect and how to protect yourself over time. Wishing you quick recovery and improving health!
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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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#4
Mon Jun 15, 2015, 12:55 PM
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Thanks Italian burrito!
Thanks Dan for the advice on infectious control. They are supposed to come today.
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Tracey, mom & wife,age 58, dx MDS RAEB-2 4/15, normal cytogenetics, Update: SCT cancelled. Blasts at 67%. New dx AML.
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#6
Tue Jun 16, 2015, 02:57 PM
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Thanks Annette. I am feeling better today.
The c-diff came back positive yesterday so they are treating that now. I am going to ask the doctor if they think I got that since I got here or if I came in with it since I wasn't having diarrhea.
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Tracey, mom & wife,age 58, dx MDS RAEB-2 4/15, normal cytogenetics, Update: SCT cancelled. Blasts at 67%. New dx AML.
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#7
Fri Jun 19, 2015, 07:07 PM
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Stay positive Tracyn11 It wasn't until the fifth round of Vidaza I started to feel right and stopped having those hospital stays, was told right from the start that it would get worse before it gets better, so hang in there it is worth it in the long run
Blast were 16% now 5% 
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#8
Fri Jun 19, 2015, 10:32 PM
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Finally Home!
Hi Faye and Annette,
Thanks for the words of encouragement. I knew the first couple of rounds were the worst, but man it just seems like one thing after another. The good news is my gut feels the best it has in months! That's great Faye that your blasts are now 5%! Hoping I will be there soon. One of the most frustrating things at the hospital was telling the infection disease spec. and the int med docs repeatedly that my ANC was not going to go up, no matter how long I stayed there. I kept asking them to call my hematologist and they finally did and of course he told them that my ANC had been close to 0 for months and wasn't going up. This was the same thing that happened last time too. I guess 0 ANC really freaks out doctors that aren't hematologists. Anyway, thanks to all for prayers and encouragement. It's good to be home. Tracey
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Tracey, mom & wife,age 58, dx MDS RAEB-2 4/15, normal cytogenetics, Update: SCT cancelled. Blasts at 67%. New dx AML.
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#9
Sat Jun 20, 2015, 07:17 AM
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There's no place like home. I am very happy for you that you are able to get out of the hospital.
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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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#11
Mon Jun 22, 2015, 06:30 AM
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Great news, Tracey! Praying for you and all the Marrowforums members who are struggling with treatment and post-transplant issues.
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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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#12
Mon Jun 22, 2015, 12:39 PM
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Thanks All!
It's good to be home. My gut feels really good, but I am still feeling a lack of energy. I have a follow up appt. tomorrow so I am going to mention that.
Tracey
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Tracey, mom & wife,age 58, dx MDS RAEB-2 4/15, normal cytogenetics, Update: SCT cancelled. Blasts at 67%. New dx AML.
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#13
Mon Jun 22, 2015, 10:55 PM
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I'm pulling for you Tracey. I struggle with the hospital stays. I was in for 17 days when I had the transplant and I wanted out really badly. I salute those who have to stay longer. They treated me well, but I do best with more sleep.
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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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