Home         Forums  

Go Back   Marrowforums > Bone Marrow Failure Diseases > MDS
Register FAQ Search Today's Posts Mark Forums Read

MDS Myelodysplastic syndromes

Reply
 
Thread Tools Search this Thread
  #1  
Old Fri Feb 9, 2018, 01:09 AM
Barb Barb is offline
Member
 
Join Date: Jan 2018
Location: Columbus, Ohio
Posts: 12
Confused and frustrated

So the plan for today was that the hospital would call me when a bed came available today and I would be admitted for 7+3 induction chemo. My mom and step dad drove in to Columbus to be ready to take me to the hospital. Finally a call came from the Dr. The call just wasn't what we expected.

Genetic testing to look for specific mutations, which was expected by today, had not yet returned. Therefore they do not know how to fine tune the chemo. They are now saying it could be Thursday before the results are in. It is emotionally draining to keep hearing this is urgent and we need to get your chemo started quickly to wait.

I had taken FMLA, and disability from work. I was packed and ready to be admitted. I had family drive in to take me to the hospital. And now I am sitting at home.

I go in to get labs Monday. If the testing is back I'll be admitted then. If not then it looks like a Thursday admission.

Has anyone else experienced something like this with an AML diagnosis?
__________________
Barb. Diagnosed MDS 5q- in 2006. Stable until 2018. Dx high risk AML with 5q-, trisomy 8, with TP53 mutation.
Reply With Quote
  #2  
Old Fri Feb 9, 2018, 06:13 AM
lisa3112 lisa3112 is offline
Member
 
Join Date: Jun 2016
Location: Melbourne
Posts: 74
Yes, unfortunately. My BMT was actually sped up because all my counts dropped unexpectedly. I rocked up to hospital (I was living 2hrs away) to get a routine Bone marrow biopsy (on a break after chemo) and I had to stay in hospital right up until the transplant (getting 2nd daily blood transfusions). I guess what I'm saying is your treatment will chop and change depending on your results. It sucks that you got delayed, but at least they are trying to give you the perfect chemo combination. Hang in there!
__________________
Now 30yr old. Diagnosed AML dec 2015 (Most likely MDS prior). Trisomy 6. Runx1 mutation also. Had induction and consolidation chemo. Marrow failure ++ so SCT on 21st of March with MUD. Married with a 1yr old!
Reply With Quote
  #3  
Old Fri Feb 9, 2018, 10:54 AM
Barb Barb is offline
Member
 
Join Date: Jan 2018
Location: Columbus, Ohio
Posts: 12
Thanks Lisa. It is good they want the right chemo.I do wish they would have told me there was a possibilty admission would change because they were waiting for these results. I am adjusting now, but initially it really threw me. I just wish my parents had not driven all the way in to Columbus before the hospital finally called.
__________________
Barb. Diagnosed MDS 5q- in 2006. Stable until 2018. Dx high risk AML with 5q-, trisomy 8, with TP53 mutation.
Reply With Quote
  #4  
Old Fri Feb 9, 2018, 09:07 PM
Naive Naive is offline
Member
 
Join Date: Jul 2016
Location: Gold Coast, Queensland, Australia
Posts: 52
My experience with Docs and hospitals is a bit like the Army....hurry up and wait. Itís awful when you lose control over everything. I hope all goes smoothly next time.
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
Probable AA diagnosis - confused kirag1964 AA 27 Tue Apr 18, 2017 10:14 AM


All times are GMT -4. The time now is 09:53 AM.


Powered by vBulletin® Version 3.6.7
Copyright ©2000 - 2018, 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 © 2006-2018 Marrowforums.org