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 Mon Jul 8, 2019, 03:42 PM
shadowii shadowii is offline
Member
 
Join Date: Apr 2019
Posts: 52
should we be worried?

Hey guys
dad has just gotten his second biopsy and passed day 100

he's had steroids for acute GVHD but is tapering them off
platelets are coming back up
hbc is 11 and vitals are good
initials results are not showing any sign of the cancers
but his wbc went from 4 to 1.6
should we be worried (they told us it could be because of the prednisone)
Reply With Quote
  #2  
Old Mon Jul 8, 2019, 10:43 PM
DanL DanL is offline
Member
 
Join Date: Dec 2010
Location: Denver, CO
Posts: 590
Shadowii,

Congratulations to your dad for surpassing day 100. May it be one of many milestones to come. All I can advise is that your dad asks lots of questions, takes his drugs as assigned, and trust the doctors. Blood counts can fluctuate a lot after transplant and are frequently drug and dose sensitive. The key at this point is to be sure that your dad avoids buffets and undercooked or unclean foods, wash hands a little more, etc. as is prescribed for lower white counts. I found that prednisone usually increased wbc, bur during tapering you can see unusual drops. Transplant is part art, part science, so expect adjustments.
__________________
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
  #3  
Old Tue Jul 9, 2019, 09:41 AM
shadowii shadowii is offline
Member
 
Join Date: Apr 2019
Posts: 52
Quote:
Originally Posted by DanL View Post
Shadowii,

Congratulations to your dad for surpassing day 100. May it be one of many milestones to come. All I can advise is that your dad asks lots of questions, takes his drugs as assigned, and trust the doctors. Blood counts can fluctuate a lot after transplant and are frequently drug and dose sensitive. The key at this point is to be sure that your dad avoids buffets and undercooked or unclean foods, wash hands a little more, etc. as is prescribed for lower white counts. I found that prednisone usually increased wbc, bur during tapering you can see unusual drops. Transplant is part art, part science, so expect adjustments.
its just hard not to imagine the worst scenarios I have to ask what were the signs before you knew you were relapsing?
Reply With Quote
  #4  
Old Wed Jul 10, 2019, 12:47 AM
DanL DanL is offline
Member
 
Join Date: Dec 2010
Location: Denver, CO
Posts: 590
Quote:
Originally Posted by shadowii View Post
its just hard not to imagine the worst scenarios I have to ask what were the signs before you knew you were relapsing?
To your question, all of my blood counts were dropping rapidly and I was exceptionally fatigued, and somewhat angrier than usual - not sure if that was a symptom. I had biopsies done every 3 months and the one that I had at that point showed chromosomal abnormalities, which confirmed a relapse.
__________________
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
  #5  
Old Wed Jul 10, 2019, 07:22 AM
shadowii shadowii is offline
Member
 
Join Date: Apr 2019
Posts: 52
Quote:
Originally Posted by DanL View Post
To your question, all of my blood counts were dropping rapidly and I was exceptionally fatigued, and somewhat angrier than usual - not sure if that was a symptom. I had biopsies done every 3 months and the one that I had at that point showed chromosomal abnormalities, which confirmed a relapse.
I see, thanks for telling me
Reply With Quote
  #6  
Old Wed Jul 10, 2019, 11:14 AM
Hopeful Hopeful is offline
Member
 
Join Date: Jan 2009
Location: California, USA
Posts: 769
Hi shadowii,

From experience, I have seen that prednisone causes a false rise in WBC's (leukocytosis).

So, I would not be concerned if his WBCs went down when it was discontinued.
__________________
58 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. small trisomy 6 clone, low-dose cyclosporine dependent
Reply With Quote
  #7  
Old Mon Jul 15, 2019, 04:07 PM
shadowii shadowii is offline
Member
 
Join Date: Apr 2019
Posts: 52
Smile

UPDATE

Biopsy came back: no presence of CLL or MDS!!!!

white count is same as last week but not getting lower (probably steroids and/or gvhd)

platelets improved by 20 points

this was such a long week
Reply With Quote
  #8  
Old Sun Jul 21, 2019, 03:39 AM
DanL DanL is offline
Member
 
Join Date: Dec 2010
Location: Denver, CO
Posts: 590
Great news that the biopsy came back negative. Hopefully blood counts will start rising soon.
__________________
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
  #9  
Old Mon Jul 22, 2019, 05:30 PM
shadowii shadowii is offline
Member
 
Join Date: Apr 2019
Posts: 52
anyway counts are stable pretty identical to last week.
They are changing one medication to see if it is whats lowering the blood counts.

One annoying thing is he has mixed chimerism.
the myloid is now 100% me (which considering that's where the mds came from that's good)
but another line is like 73/27 ratio me/him

they don't seem worried but its hard not to be when ive how fast things can go south
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

Similar Threads
Thread Thread Starter Forum Replies Last Post
Worried and not sure where to begin... ReneeC Questions and Answers 5 Sat Feb 18, 2017 06:24 PM
My mother's results, we are very worried apantoja Questions and Answers 1 Fri Oct 10, 2014 05:21 AM
Worried, scared mom KellyMc Pediatrics 2 Fri Jan 24, 2014 02:41 PM
How Worried Should I Be? BrendaB Questions and Answers 3 Thu Oct 3, 2013 11:36 PM
Worried about Mom imvalfan MDS 20 Sun May 12, 2013 08:33 PM


All times are GMT -4. The time now is 02:31 PM.


Powered by vBulletin® Version 3.6.7
Copyright ©2000 - 2024, 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 © 2006-2020 Marrowforums.org