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#1
Sun Nov 10, 2013, 12:39 PM
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Being Admitted 11/12!!!
Hello All - Received a call alittle bit ago that doc wants me admitted 11/12 to start treatment to reduce blasts prior to transplant. Feeling all those emotions - happy scared anxious and afraid. Will let you know how it goes.
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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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#2
Sun Nov 10, 2013, 12:51 PM
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We will be praying for you, there will be bumps in the road, and it will feel exceedingly long, but you will get through it...
God bless and be well.
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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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#3
Sun Nov 10, 2013, 01:31 PM
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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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#4
Sun Nov 10, 2013, 02:27 PM
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Susan
You will be in my prayers. I was scared too, but it wasn't as bad as I feared & all of the nurses were very helpful and explained everything that was going on.
Keep us posted.
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62 yr old female. dx AA 3/12.treated with ATG 4/12.dx MDS 4/13. MUD BMT on June 25th,2013
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#5
Sun Nov 10, 2013, 02:56 PM
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Vicki
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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#6
Sun Nov 10, 2013, 07:21 PM
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Susan,
That is great news! I am so happy for you. You know, after reading everyone's comments, what to do. Dave is right. There will be bumps in the road. Doug is back in the hospital now. He really couldn't eat and drink. All he wanted to do was sleep. They ran all sorts of tests on him. So far, nothing has appeared for which I am grateful. They just need to get to the bottom of this. Until then, they will not release him. Sooooo, be prepared for the bumps and you will do fine! Deb
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#7
Sun Nov 10, 2013, 07:38 PM
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Deb/Doug,
Prayers, hugs and Blessings coming your way... These little tests will be sent to all of us, we must be strong and not give up hope... Positive aditude is EVERYTHING !!! Be well and God bless...
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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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#8
Mon Nov 11, 2013, 12:15 PM
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Deb/Dave/Vicki
Hi All - Just waiting to hear what time to check in - I hope I do as well as everyone before me. Got to keep the bar up. :-)
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MDS RAEB 2 w/excess blasts - 3+ Fibrosis - previous treatments ATG, Vidaza, Dacogen and Rituxan. Waiting to find my match - Susan
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#9
Mon Nov 11, 2013, 03:17 PM
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Good luck, Susan. Thoughts and prayers are with you!
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Linda, Al's wife, 75; dx MDS 5/2010; Vidaza 6/2010; ARRY614 & Sapacitabine clinical trials at Emory, no results, stopped 12/2011. Had BMB at NIH on 6/5/12, blasts 10-15% so he's not eligible for trial there. :eek Promacta trial, Tampa, blasts 25-30% 8/17/12 AML, trying Dacogen now and praying.
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#10
Mon Nov 11, 2013, 03:27 PM
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Great news and best of luck Susan!
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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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#12
Mon Nov 11, 2013, 06:03 PM
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Dave- question
One question please - did you lose your hair? If so, how long did it take to happen. Glad you are on an upswing now and hoping you see nothing but clear skies ahead. Susan
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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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#13
Tue Nov 12, 2013, 03:31 AM
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Susan L,
I went into the hospital with a completely shaved head... I did so the week before, so that my girls would not associate the hair loss with my Hospitalization... They loved it... continuously stroking my bald head... Right now I've been shedding hair for two weeks from all around my body, and haven't needed to shave my head (with electric razor) for over a week... I really liked the Idea of going in strong, it's one less thing to worry about also (Dirty hair / how it looks...) Many people now a days shave their heads for a fashion statement, it wasn't so in the 80's or 90's, now it's popular alternative, and I will probably stay bald for the rest of my life, easier to manage... Best Regards, and God Bless...
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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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#14
Tue Nov 12, 2013, 04:36 PM
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Hi Susan L, Just want to wish you a smooth as possible BMT and to remind you that you choose a great day to be cured as 11/12/13 is supposed to be LUCKY!
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06/2004 my son was dx with SAA at the age of 10. No sibling BM match. He underwent ATG (H)/CsA. Relapsed 05/12 & dx'ed w/PNH. Currently in wait/see mode for Solaris as he is asymptomatic... 
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#16
Tue Nov 12, 2013, 07:56 PM
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Hi All
Got admitted today - ekg echo labs and pic line. tomorrow ct head abd and chest and start chemo - don't know what the med is yet. Thank you all for your support and going to try and be as positive as ever!! Thank you for the replies - got some cute hats for the time - and Dave shaving your head ahead of time so the girls not associating it was a very smart idea. Have a good night 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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#17
Wed Nov 13, 2013, 05:16 AM
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All the very best, Susan! Thoughts and prayers for you and all the other BMT friends on the forum.
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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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#18
Wed Nov 13, 2013, 06:12 AM
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Cheryl
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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#19
Wed Nov 13, 2013, 07:55 PM
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Susan and everyone else
Good luck with your BMT. Stay strong, think positive, follow all directions and you will come out of this on the bright side!!
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Dx. 6/08 with AA, then changed shortly thereafter to MDS. Campath trial at NIH March '09 and have been transfussion independent since June '09
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