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#1
Thu Oct 3, 2013, 11:54 PM
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Admitted for transplant
Admitted for transplant today
3 units of platelets first then It took a really long time for first attempt of placing a port. Bed side w a local. I don't reccomend that. Second attempt was successful in OR w some sleepy time gas. That was the reccomendation the first time but my husband was a little worried about the gas bc he's never had it. (I think that's normal) Just getting hydrated and an iv antibiotic (prophylaxis) then some blood Staff are All really sweet, room is comfy, and tons of things in walking distance if he needs anything. <3 the Houston med center so far
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Heather, wife of Ronald 36; dx PNH 2012; Dx VSAA 2013; eculizumab(Solaris) hATG 2/20/13 cyclosporine 400 mg daily. 37 units RBC and 15 units of platelets. Post BMT -pentam,vorconizole,valtrex, valcyte, actigall, Pepcid , prograf, magnesium. 10/10 MUD 10/10/13 Now no PNH or AA. Mixed Chimerisim 
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#2
Fri Oct 4, 2013, 06:33 AM
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Best wishes for a successful transplant and engraftment! We are all here for you.
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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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#3
Fri Oct 4, 2013, 07:31 AM
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Heather
Quote:
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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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#4
Fri Oct 4, 2013, 11:35 AM
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Heather / Ron,
Best of luck to you, I'll be praying for a 100% successful outcome... I'm right behind all of you guys... 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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#5
Fri Oct 4, 2013, 02:56 PM
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Will be following your journey. My husband was due to enter the hospital on the 13th and receive transplant on the 18th, but that has been delayed due to an infection. The waiting is hard, but of course we want him to be healthy going in. Good luck with everything.
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#6
Fri Oct 4, 2013, 03:01 PM
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Go Ronald!
I'm glad you're there to keep an eye on everything, Heather, and to keep us informed. Good luck to both of you!
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#8
Fri Oct 4, 2013, 10:32 PM
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Good luck Ronald and Heather.
Will you be keeping a blog of your journey?
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Dx June 2013 MDS del 5q and 7t. Further chromosone changes August 2017. Lenolidomide and 10 months on Azacytadine failed. Transition to AML August 2018 failed induction chemo. Trial drug FT2101 failed at 6 months. Next on Venetoclax with cytoterabine.
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#9
Sat Oct 5, 2013, 07:41 PM
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Thank yall all for the responses! He also enjoyed the encouragement
 Honey he has been keeping a written journal but I'm talking to him about doing a carringbridge one. Katgio I'm sorry your husband is battling an infection. How is he now? Wiz thank you we will have you in ours. I will also post his schedule bc I was wrong earlier when I said his was simular to yours. Are you getting anxious? We had trouble sleeping the week or two before but are doing well now we are finally here. Susan I hope you get word back soon on the potential donor they found. Thank you Cheryl and Neil! Deb how are you and your husband?
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Heather, wife of Ronald 36; dx PNH 2012; Dx VSAA 2013; eculizumab(Solaris) hATG 2/20/13 cyclosporine 400 mg daily. 37 units RBC and 15 units of platelets. Post BMT -pentam,vorconizole,valtrex, valcyte, actigall, Pepcid , prograf, magnesium. 10/10 MUD 10/10/13 Now no PNH or AA. Mixed Chimerisim
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#10
Wed Oct 16, 2013, 12:30 AM
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Day 5 post transplant
Hi all
just wanted to let y'all know my husband is doing really well so far he's tolerated the chemo/radiation well and now we are just waiting for engraftment.
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Heather, wife of Ronald 36; dx PNH 2012; Dx VSAA 2013; eculizumab(Solaris) hATG 2/20/13 cyclosporine 400 mg daily. 37 units RBC and 15 units of platelets. Post BMT -pentam,vorconizole,valtrex, valcyte, actigall, Pepcid , prograf, magnesium. 10/10 MUD 10/10/13 Now no PNH or AA. Mixed Chimerisim
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#11
Wed Oct 16, 2013, 07:25 AM
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Heather
Quote:
__________________
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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#12
Wed Oct 16, 2013, 09:50 AM
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Heather / Ron,
Best of luck, It's good to hear that he tolerated the radiation and chemo well... Ron's young, and he should be up and running around very soon. I'm due to start Monday, and it's encouraging to hear that things are going well... God Bless and a speedy engraftment...
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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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#13
Thu Oct 17, 2013, 02:51 PM
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Susan that is great news they have more then one person as a potential match for you! They have an opportunity to choose someone that may be a better candidate for you if they are both 10/10.
Whiz thank you you will do great! Take the advise your team gives you. The first day a Nurse told us" we are going to ask you to do things and there are reasons for all of those things that are important reasons so please do them we are not trying to be mean"And I'm happy she said that so communicate everything, complain if anything is bothering you, take there advise. Do any and all things that cheer you up while your in hospital. Funny movies, books, Skype w people or call them it lights my husband up everytime he does . Eat all the yummy/bad things you like when you first get admitted ! We have tried to make things as fun and enjoyable as possible. Glass half full makes everything betterY'all will be in my prayers
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Heather, wife of Ronald 36; dx PNH 2012; Dx VSAA 2013; eculizumab(Solaris) hATG 2/20/13 cyclosporine 400 mg daily. 37 units RBC and 15 units of platelets. Post BMT -pentam,vorconizole,valtrex, valcyte, actigall, Pepcid , prograf, magnesium. 10/10 MUD 10/10/13 Now no PNH or AA. Mixed Chimerisim
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#14
Thu Oct 17, 2013, 03:39 PM
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Heather Whizbang Holly Deb and all
I am so stoked about them finding matches for me. I received an email this morning that they will meet w/my doctor tonight (afternoon) and probably give me a call tomorrow with a plan. I am just so happy - then scaredf - then happy that all of this can one day be gone. I will let you all know as soon as I do. Wishing much success for all - come on and do the best as I use you all as my barometers!!! Susan
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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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#15
Thu Oct 17, 2013, 06:29 PM
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Heather--Great advice! Eating as much beforehand is key. Also, a positive attitude is crucial. You just HAVE to keep going. Doug has had a real problem with boredom. On those days that he doesn't feel like reading, watching TV, or talking it is hard. But I think we are past those now. I think if someone likes to do word puzzles or some activity like that, it would be good. Then again, when you feel like you know what, nothing is appealing.
Susan--What great news for you! You have to be so excited. Dave--We are counting on news from you. Best of luck! Deb
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#16
Sat Oct 19, 2013, 06:35 PM
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Hi all
Howdy all - They called me yesterday - I have another bone marrow biopsy on Tues and on Nov 4th doctor wants to see me and go over the PLAN. Yeah I am so so so happy to get this started. Best to all of you and lets make it the best transplants eva. 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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