Home         Forums  

Go Back   Marrowforums > Treatments > Transplants
Register FAQ Search Today's Posts Mark Forums Read

Transplants Bone marrow and stem cell transplantation

Reply
 
Thread Tools Search this Thread
  #1  
Old Fri Jan 24, 2014, 02:03 PM
DanL DanL is offline
Member
 
Join Date: Dec 2010
Location: Denver, CO
Posts: 579
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!
__________________
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.
Reply With Quote
  #2  
Old Fri Jan 24, 2014, 02:41 PM
Relentless Against SAA Relentless Against SAA is offline
Member
 
Join Date: Sep 2013
Posts: 77
I wish you the best!
Reply With Quote
  #3  
Old Fri Jan 24, 2014, 03:29 PM
Whizbang Whizbang is offline
Member
 
Join Date: Aug 2013
Location: Central NJ
Posts: 299
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!!!
__________________
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)
Reply With Quote
  #4  
Old Fri Jan 24, 2014, 03:31 PM
Neil Cuadra Neil Cuadra is offline
Owner
 
Join Date: Jul 2006
Location: Los Angeles, California
Posts: 2,493
Good luck to you and your wife, Dan.

Have they estimated your inpatient time?
Reply With Quote
  #5  
Old Fri Jan 24, 2014, 06:14 PM
Bhutt Bhutt is offline
Member
 
Join Date: Apr 2013
Location: Canada
Posts: 44
Good luck Dan. It's 7 months for me.

Blair
Reply With Quote
  #6  
Old Fri Jan 24, 2014, 07:05 PM
Kathy S Kathy S is offline
Member
 
Join Date: Nov 2013
Location: Leesburg, Fl
Posts: 72
All the best to you Dan. Everyone here will be following your progress.

Kathy
__________________
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
Reply With Quote
  #7  
Old Fri Jan 24, 2014, 09:31 PM
DanL DanL is offline
Member
 
Join Date: Dec 2010
Location: Denver, CO
Posts: 579
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.
__________________
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.
Reply With Quote
  #8  
Old Fri Jan 24, 2014, 09:39 PM
DebS DebS is offline
Member
 
Join Date: Mar 2013
Location: IL, WI
Posts: 154
Best of luck to you, Dan.

Post when you can and listen to the doctors!

God bless!

Deb
Reply With Quote
  #9  
Old Sat Jan 25, 2014, 10:54 AM
vickij vickij is offline
Member
 
Join Date: Apr 2013
Location: Connersville, Indiana
Posts: 117
You will be in my prayers Dan.

I had my transplant 7 mo. ago and was in the hospital 22 days.
__________________
62 yr old female. dx AA 3/12.treated with ATG 4/12.dx MDS 4/13. MUD BMT on June 25th,2013
Reply With Quote
  #10  
Old Sat Jan 25, 2014, 01:04 PM
Diver down Diver down is offline
Member
 
Join Date: Oct 2013
Location: Miami FL
Posts: 25
You will be in my thoughts and prayers. Wishing a speedy engraftment!!

Wife of Diver Down
Reply With Quote
  #11  
Old Sat Jan 25, 2014, 04:55 PM
dfantle dfantle is offline
Member
 
Join Date: Jan 2012
Location: bellevue, wa
Posts: 150
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.
__________________
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
Reply With Quote
  #12  
Old Sat Jan 25, 2014, 06:09 PM
mausmish mausmish is offline
Member
 
Join Date: Mar 2010
Location: Maryland
Posts: 450
Congratulations, Dan! A scary and exciting time for you. Please keep us updated when you can. Wishing you all the best. Karen
__________________
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
Reply With Quote
  #13  
Old Sun Jan 26, 2014, 06:54 PM
Cheryl C Cheryl C is offline
Member
 
Join Date: Dec 2011
Location: Lake Macquarie, Australia
Posts: 833
A big decision, DanL. You will be included in my prayers for all transplant patients.
__________________
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.
Reply With Quote
  #14  
Old Tue Feb 18, 2014, 10:20 PM
DanL DanL is offline
Member
 
Join Date: Dec 2010
Location: Denver, CO
Posts: 579
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.
__________________
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.
Reply With Quote
  #15  
Old Wed Feb 19, 2014, 12:22 AM
bailie bailie is offline
Member
 
Join Date: Dec 2013
Location: McMinnville,OR
Posts: 825
Be well Dan! I'll be right behind you in a couple of months.
__________________
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.
Reply With Quote
  #16  
Old Wed Feb 19, 2014, 11:26 AM
Whizbang Whizbang is offline
Member
 
Join Date: Aug 2013
Location: Central NJ
Posts: 299
Again, Best of Luck...

May God Bless...
__________________
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)
Reply With Quote
  #17  
Old Wed Feb 19, 2014, 12:40 PM
MaryS MaryS is offline
Member
 
Join Date: Nov 2013
Location: Herndon VA my father in New Orleans,La
Posts: 24
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
__________________
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?
Reply With Quote
  #18  
Old Sat Mar 1, 2014, 09:37 PM
DanL DanL is offline
Member
 
Join Date: Dec 2010
Location: Denver, CO
Posts: 579
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.
__________________
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.
Reply With Quote
  #19  
Old Sun Mar 2, 2014, 04:00 PM
Diver down Diver down is offline
Member
 
Join Date: Oct 2013
Location: Miami FL
Posts: 25
Question

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 ?
Reply With Quote
  #20  
Old Sun Mar 2, 2014, 06:01 PM
DanL DanL is offline
Member
 
Join Date: Dec 2010
Location: Denver, CO
Posts: 579
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!
__________________
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.
Reply With Quote
  #21  
Old Tue Mar 4, 2014, 12:32 AM
slip up 2 slip up 2 is offline
Member
 
Join Date: Feb 2011
Location: ontario canada
Posts: 135
Dan....to you & your family .....all the best....
kate
Reply With Quote
  #22  
Old Thu Mar 6, 2014, 01:15 AM
DanL DanL is offline
Member
 
Join Date: Dec 2010
Location: Denver, CO
Posts: 579
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?
__________________
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.
Reply With Quote
  #23  
Old Thu Mar 6, 2014, 02:52 AM
Heather8773 Heather8773 is offline
Member
 
Join Date: Jan 2013
Location: Houston, TX
Posts: 254
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!!
__________________
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
Reply With Quote
  #24  
Old Sat Mar 8, 2014, 12:11 PM
bailie bailie is offline
Member
 
Join Date: Dec 2013
Location: McMinnville,OR
Posts: 825
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.
__________________
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.
Reply With Quote
  #25  
Old Sat Mar 8, 2014, 07:25 PM
DanL DanL is offline
Member
 
Join Date: Dec 2010
Location: Denver, CO
Posts: 579
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.
__________________
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.
Reply With Quote
Reply


Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

vB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Forum Jump


All times are GMT -4. The time now is 07:16 AM.


Powered by vBulletin® Version 3.6.7
Copyright ©2000 - 2019, Jelsoft Enterprises Ltd.
Forum sites may contain non-authoritative and unverified information.
Medical decisions should be made in consultation with qualified medical professionals.
Site contents exclusive of member posts Copyright © 2006-2019 Marrowforums.org