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#1
Thu Apr 24, 2014, 11:02 PM
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6 months post transplant
6 months ago my husband had his transplant and so far by the grace of God he has done amazingly!
His counts Today Hgb 14.0 Plts 157 WBC 3.4  Only issue is the chimerism has dipped down a bit again.. (some of his old cells showing again) Last time this happened they lowered his prograf and it went to 100% so they lowered it again. Hope to see that number back up soon!! But otherwise he has been soooo blessed!! Best wishes to all!!
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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
Thu Apr 24, 2014, 11:07 PM
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Heather and Ron,
This is a great milestone. Congratulations! I guess the CMV mismatch didn't turn out to be a problem. I think Ron has gotten the very best of care, and you guys deserve it.
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#3
Fri Apr 25, 2014, 05:42 AM
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Great news Heather! May God bless Ron with full healing.
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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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#4
Fri Apr 25, 2014, 10:58 AM
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Congratulations to both of you. My husband also is nearing the 6 month mark and is doing well. He is age 74 so we can see that transplants can be successful at many ages. His WBC is 4.1, HGB is 10.6 and PLT 203. We do not know the results of the latest biopsy.
We wish you both continued good health.
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#5
Fri Apr 25, 2014, 11:28 PM
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That is great news Heather. Glad to hear that Ron is doing well 6 months out.
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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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#6
Sat Apr 26, 2014, 12:02 AM
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Heather / Ron,
So glad to hear.... My counts are similar, I'm 6 days from 6 months... Continued Blessings...
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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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#7
Sat Apr 26, 2014, 12:07 AM
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I appreciate the group of optimistic reports. Keep up the good work!!
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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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#8
Mon Apr 28, 2014, 01:01 AM
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Heather and Ron, wonderful news on Ron's six-month anniversary. #'s are looking awesome
. Woohoo!
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Dena Age 54; DX Heavy Chain (AH) Amyloidosis 6/10; AutoSCT 3/11; Amyloidosis remission 6/11; DX SAA 7/11; Horse ATG 3/12; Mini MUD SCT 1/13; Recovered from SAA 5/13 & feeling great
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#9
Wed May 7, 2014, 12:57 AM
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Thank y'all!!!
Follow up appointment next week to see if lowering the prograf helped his chimerisms! Prayers for that  Neil they kept such a close eye on his CMV # s from day one that when they barly moved he was put on acyclovir and that knocked it back into place. Thank you for your kind words! Kat that is wonderful!!! So awesome you are sharing his story!! Dan Dfantle and whiz so happy to see y'all are doing so well!!! Cheryl thank you prayers have carried us through so far and are so appreciated!!! Prayers your way! How are you doing? Bailie prayers of strength peace healing recovery and knowledgeable Drs and staff your way to your upcoming SCT!
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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
Thu May 8, 2014, 11:55 PM
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I am doing fine, thanks Heather. Stable. My white cells and neuts are the main problem - the other counts aren't much below normal. I don't have many obvious infections - sometimes I feel unwell and my specialist says that this is because my body is fighting infections but most of the time so far I feel pretty normal for which I thank God.
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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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#11
Thu Jun 5, 2014, 02:35 AM
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Cheryl I love your strength
God blessWell his mix is still like 80/20 but I guess we need to just accept and be thankful for that and it doesn't have to be perfect 100/100 as long as it dosent dip more he can be healthy in that range.. His counts are all in normal range except WBCs but neuts are w no complications of GVHD and as Cheryl mentioned We thank God Methodist Donors and the support of y'all and family
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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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#12
Fri Apr 6, 2018, 02:30 AM
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Update
Hello everyone.
I remember posting when we were in the scariest time “ why don’t people post after their transplants to give hope” Someone told me basically because people’s lives continue and they put this behind them and someone said most people check in when things are scary. Which I thought well I won’t do that .. I was shocked to see that I haven’t logged in 3 years next week. My husband has more energy then I do now a days and is on less meds now. Only an antibiotic 3 days a week, BP meds And nexium What’s crazy is I don’t remember what exactly each of those drugs listed in my tag line did anymore. It feels like an aweful dream sonetimes. I remember thinking on day one, 30 days will feel like a year, 90-100 days felt like 5 years and being afraid of how long it would take if and when we would get to 365 days. But they came. Faster after every mile stone. God is good and I hope that anyone facing transplant has some hope from this update
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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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#13
Fri Apr 6, 2018, 04:49 PM
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Heather,
Thank you for the update. So glad to hear your husband is doing well after all this time. It does give me hope as I prepare for transplant. I am working on getting into remission. My most recent labs show no periperal blood blasts, and no nucleated red blood cells. I am hoping that after my next round of chemo which starts next week I will be ready for my next BMB (never thought I would be eager to have another BMB  ) so I can start the pre-transplant testing. I get the wanting to get on with life after a while. I had been on here post MDS diagnosis but I did not come for years until I hit another scary time with the AML diagnosis. Thanks for coming back to update us. I am looking forward to the days when I do not remember all the drugs now, let alone the post transplant drugs. Blessings, Barb
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Barb. Diagnosed MDS 5q- in 2006. Stable until 2018. Dx high risk AML complex karyotype with TP53 mutation. On Dacogen, moving towards transplant.
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#14
Fri Apr 6, 2018, 10:57 PM
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Hi Barb
Thank you 😊 I can understand from only my perspective your excitement. Living by numbers so to speak. I hope your BMB goes smoothly and numbers are what y’all hope to see. I also hope you have the “favorite “ doing the BMB my husband finally found one he is the most comfortable w. If I can be of any help please don’t hesitate to ask. I’m happy to share anything about his experience God bless
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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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