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 Mon Nov 14, 2011, 04:18 PM
disneydad disneydad is offline
Member
 
Join Date: Sep 2010
Location: ny
Posts: 13
What will be next...

As I explained in my other post, it appears that my moms disease is progressing. Since being diagnosed two years ago, her symptoms have been limited to feeling tired between transfusions. If she is progressing what can we expect? What happens to patients with MDS as the disease progresses?
Will it be painful for her? What causes of death are common for MDS patients?
I guess i'm feeling scared.
Reply With Quote
  #2  
Old Mon Nov 14, 2011, 09:56 PM
DanL DanL is offline
Member
 
Join Date: Dec 2010
Location: Denver, CO
Posts: 590
Disneydad,

I am sorry to hear of your mother's condition. This is a disease that has not received enough attention and a lot of the information available is rather old.

In a nutshell, when MDS progresses, it progresses in a couple of ways.

1) progressive cytopenias - meaning that the blood counts start to get worse in all three blood lines, or the severity of transfusion need increases substantially.

2) conversion from mds to aml - basically the bone marrow is producing too few good blood cells and a lot of immature blood cells resulting in the aforementioned cytopenias. The immature cells are called blasts.

Aside from other existing illnesses or health conditions, the two most common causes of MDS related death are infections due to low white blood counts and bleeding (internal or external) due to severely low platelet counts. Sometimes the low blood counts can cause additional stress on the body and affect other internal organs if left unattended too long, which is why it is key to keep on top of her blood counts.

As for the suffering, other than the stress of dealing with a disease that does not have a sure-fire cure, I don't experience any disease related pain or suffering. I think some others in the forum may be able to provide more insight, but so far as I have experienced, the disease itself is not directly resposnible for physical discomfort.

I wish you and your mom 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
  #3  
Old Tue Nov 15, 2011, 12:12 AM
bebop bebop is offline
Member
 
Join Date: May 2010
Location: Maysville Ga
Posts: 323
I think everyone like this disease is different. My dad's dr told us he could either have a major bleed or infection or he would just go to sleep. Neither of those happened to him thank goodness. He grew very weak and transfusions no longer worked for him so they were stopped. He gradually stopped eating and drinking for the most part. His transfusions were stopped on April 5 and he passed May 3. He had no pain to speak of until Saturday before he passed on Tuesday. I will be happy to talk to you about it.
Reply With Quote
  #4  
Old Tue Nov 15, 2011, 08:55 AM
disneydad disneydad is offline
Member
 
Join Date: Sep 2010
Location: ny
Posts: 13
Quote:
Originally Posted by bebop View Post
I think everyone like this disease is different. My dad's dr told us he could either have a major bleed or infection or he would just go to sleep. Neither of those happened to him thank goodness. He grew very weak and transfusions no longer worked for him so they were stopped. He gradually stopped eating and drinking for the most part. His transfusions were stopped on April 5 and he passed May 3. He had no pain to speak of until Saturday before he passed on Tuesday. I will be happy to talk to you about it.
Thanks. My mom has been receiving transfusions avery two weeks for a few months now and she needed one much sooner this time. This is also the first time that there were blasts in her blood. I cant escapr the feeling that this is the beginning of the end. At what point do they stop the transfusions?
Reply With Quote
  #5  
Old Wed Nov 16, 2011, 06:25 PM
bebop bebop is offline
Member
 
Join Date: May 2010
Location: Maysville Ga
Posts: 323
Dad had blood every couple of weeks for quite a while then went to every week. Then his platelets went way down and had to have 4 units a week and honestly it wasn't enough. not sure they looked for blasts in his weekly blood test but it certainly can show up there. The won't stop them unless she wants to stop or they just don't work anymore.
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 05:44 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