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#1
Fri Jan 24, 2014, 01:03 PM
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And we have a date
All of my pre-transplant testing is complete, everything looks pretty good, and I will be checking into the hospital February 12th, starting treatment on the 13th, receiving my generous donor's cells on 2/20.
We will be doing Bu/CY conditioning, rATG, Methotrexate and Tacrolimus as GVHD prophylaxis. it has been nearly 4 years in the making, but here we are!
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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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#2
Fri Jan 24, 2014, 01:41 PM
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I wish you the best!
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#3
Fri Jan 24, 2014, 02:29 PM
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Best of luck Dan...
The Hospital will be a blur, the days before the transplant will fly, and the days after will soon be a memory... I just went in for my BMT/SCT... and here I am at D+85... You will be on our minds... 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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#4
Fri Jan 24, 2014, 02:31 PM
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Good luck to you and your wife, Dan.
Have they estimated your inpatient time?
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#6
Fri Jan 24, 2014, 06:05 PM
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All the best to you Dan. Everyone here will be following your progress.
Kathy
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Kathy,wife of 69 year old male with DX June 2013 with MDS= RAEB 2refractory with Extra Blast Very High Risk WBC 1.9-RBC 2.29-HGB 8.1-PLT 32-, as of Aug 2013:. BMB 12/4/13= WBC 5.57/RBC 4.86/HGB 15.5/HCT 42.8/RDW 49.6/PLT 188. 3% blast.BMB 4/11/14 WBC1.6,PLT12,RBC2.6,HGB9.2
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#7
Fri Jan 24, 2014, 08:31 PM
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Thank you all for the well wishes, I accept them all indiscriminately given what I am about to face.
Neil, the team estimates about 25 to 30 days, the insurance estimates a maximum of 35 days. I am planning on the longer end of the range, but hopeful it will be sooner. The doctor says that most people are out by day +20, which would be 27 days total.
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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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#9
Sat Jan 25, 2014, 09:54 AM
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You will be in my prayers Dan.
I had my transplant 7 mo. ago and was in the hospital 22 days.
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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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#10
Sat Jan 25, 2014, 12:04 PM
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You will be in my thoughts and prayers. Wishing a speedy engraftment!!
Wife of Diver Down
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#11
Sat Jan 25, 2014, 03:55 PM
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Best wishes Dan.
I agree with Deb's comment, listen to your Dr's ( & nurses). Also, ask as many questions as you like. You'll look back when you reach each milestone and relish how far you've come. My 1 year is Jan 29 & it really has gone by fast.
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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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#12
Sat Jan 25, 2014, 05:09 PM
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Congratulations, Dan! A scary and exciting time for you. Please keep us updated when you can. Wishing you all the best. Karen
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Karen, age 62, dx MDS RAEB-2 1/8/10: pancytopenia WBC 2.7k/Hgb 7.4/Hct 22.1/Plt 19k; complex cytogenetics -3,del(5)(q14q33),-6,+8,+mar,17% blasts. MUD BMT Johns Hopkins 11/30/10. Dx tongue cancer 8/31/12. ok now. blog mausmarrow.com
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#13
Sun Jan 26, 2014, 05:54 PM
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A big decision, DanL. You will be included in my prayers for all transplant patients.
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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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#14
Tue Feb 18, 2014, 09:20 PM
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Had a slight delay in admissions to the hospital - had to have 4 wisdom teeth and 4 molars pulled - ouch - literally and figuratively. Checked into the hospital today, will receive a little more blood and begin round the clock busulfan tomorrow through Saturday.
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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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#15
Tue Feb 18, 2014, 11:22 PM
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Be well Dan! I'll be right behind you in a couple of months.
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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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#16
Wed Feb 19, 2014, 10:26 AM
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Again, Best of Luck...
May 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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#17
Wed Feb 19, 2014, 11:40 AM
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God Speed!!!! Amen
Dan you will do excellent ` Positive thoughts coming your way. Remember when s itting in your bed to take deep breaths and exhalations a few times a day. Fill those lungs with oxygen.( this is the nurse speaking in me).
May God work his miracle in you Dan! Mary S
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Mary, daughter / caregiver of Bob age 77; on Oct 1 2013 dx with MDS/MPN overlap +Trisomy. Jak2 at d< 5 blast. , and on March 1 2014 Dx with AITL non Hodgkin's Lymphoma. Tx: decitabine/prednisone/Jakafi?
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#18
Sat Mar 1, 2014, 08:37 PM
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So we are past all of the conditioning, received cells on 02/26 from a generous anonymous donor. I have received a total of 3 PRBC transfusions and 4 platelet transfusions - holding steady today with 48k platelets and 8.6 HGB, ANC have come down and now are at 1172, should drop below the 1k mark today to become neutropenic. I am feeling pretty good on the scale of things, and cannot begin to tell you how wonderful the nursing and medical staff are here. These folks are the very best I could ask for.
We are working on adjusting Tacrolimus levels, I keep showing up a little high - was 18 the other day, target of 12, was 15 this morning. We think the dose is right, but that my body is just trying to catch up a little. It has been pretty nice being able to get up and about daily to take walks and ride the stationary bike - walked almost 2 miles today. I also wanted to express gratitude to all on this forum as I have learned from the transplant experiences of you and your loved ones, which has helped me prepare for some of the stuff that has come up so that they are seen as obstacles not road blocks. Wishing all of you well.
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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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#19
Sun Mar 2, 2014, 03:00 PM
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Glad to hear you are doing so well!!! Feeling pretty good here except profound fatigue. Still no nadir- Admission WBC 1.1; Now WBC on Day +8 = 0.7;
Jumped to 4.7 D+3 Attributed to Neupogen. Are you also receiving Neupogen ?
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#20
Sun Mar 2, 2014, 05:01 PM
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I am not receiving neupogen currently and have not heard any talk of doing so, but that probably doesn't mean much. There are so many regimens that are being administered just in my little wing of 10 people. My neutrophils did drop further last night, down to 490…almost there. Woke up pretty tired even even after 9 hours of sleep.
I asked do neutrophils always get to zero or really close, and the response was, don't worry, they will be there soon enough. My level of fatigue is also pretty high, even compared to what I came in expecting. Hang in there!
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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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#22
Thu Mar 6, 2014, 12:15 AM
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neutropenic fever? - possibly
Had my first fever of the adventure tonight. Started 99.6, then 100.6, then 102.3 within about an hour. Blood cultures and cefapine (broad spectrum antibiotic) in addition to my normal voriconazole, actigol, levaquin, acyclovir, clindamycin….
Feel a little like a drama queen, but i really want to be on top of infections since I am at day +7 and have and of .49. after about 2 hours of rising temps, fever breaks (no sweat) and back down to 99. Another day in the transplant unit eh?
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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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#23
Thu Mar 6, 2014, 01:52 AM
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Dan
When my husband started getting fevers at night it was right before engraftment  although his wasn't as high as yours it seemed to always break on its own.. Glad they seem to be diligent in testing and watching!!
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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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#24
Sat Mar 8, 2014, 11:11 AM
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Dan, just checking in, how is the fever? Did you/they get it under control fairly quickly? How is the energy level now? I am guessing this is a tough week and you have not been wanting to get on a computer. Stay strong, be well.
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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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#25
Sat Mar 8, 2014, 06:25 PM
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Bailie, I was given Cefepime(sp?) which seems to have knocked out the fever quite well after 2 doses. I am on dose 4, no fevers since that time. As it turns out I had some form of bacterial infection. They have not yet identified what it was, but there was some creature growing on the blood culture.
Feeling good today and yesterday. ANC have hit their lowest point at 18 today, still waiting for zero and then engraftment. Protocol at this place seems to be wait until day 13 for Neupogen if needed. I am only at day 10.
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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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