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 Thu Oct 23, 2008, 01:11 PM
vicki vicki is offline
Member
 
Join Date: Oct 2008
Location: Smithtown, NY
Posts: 1
87 year old mom with MDS

My mom has been diagnosed with MDS for over 3 years now, and sadly all treatment options that have helped prolong her life are no longer helping. The doctor has stopped all treatments. What can I expect her symptoms to be now. How can I best prepare for making her as comfortable as possible?
thanks for any help.
Vicki
Reply With Quote
  #2  
Old Fri Oct 24, 2008, 11:28 AM
Dick S Dick S is offline
Member
 
Join Date: Jan 2008
Location: Florida
Posts: 189
First off, just love her for all she's worth.
Unfortunately, there is very little you can do for the disease. My wife just stands by with love and support and does things for me as best she can and lets me fight my daily battle.
Your mom is going to get very very tired most of the time and the most you can do is do things for her and relieve her of any work or burdens she may have and make here as comfortable as possible. I wish and prayer your mom all the best. Remember and cherish the good times you two had. Take it one day at a time and you will get through it.
__________________
Dick S, diagnosed Feb. 2008 with MDS. Last BMB April 2016. New diagnosis is CMML stage 1.
Reply With Quote
  #3  
Old Sat Oct 25, 2008, 04:24 AM
Chirley Chirley is offline
Member
 
Join Date: Oct 2007
Location: Logan City Australia
Posts: 1,100
Hi,

I just wanted to send you my best wishes. I have not lost any one close to me yet and I'm very grateful for that. When my mother was very ill and we thought we were going to lose her, I just felt so helpless. I couldn't help her and I couldn't console my father. I am grateful every day that she pulled through.

On a more practical note. When I was very sick and was told that I might not survive, I was appreciative of any little thing that was done to make me physically more comfortable. Anything from brushing my hair to wiping my face with a lovely cool scented cloth. My back was sore from staying in bed and it was wonderful when family or friends lightly massaged my back for me. I loved the foot massage that I got. Most of all, I appreciated not only the presence and love of my family and friends, but their intuition in knowing when I needed time by myself, to rest or just think things through. I would not have liked to have to tell them to leave me alone for a while.

My thoughts are with you.

Chirley
__________________
Copper deficiency bone marrow failure (MDS RAEB 1), neuromyelopathy.
FISH reported normal cytogenetics but gene testing showed
Xq 8.21 mutation
Xq19.36 mutation
Xq21.40. mutation
1p36. Mutation
15q11.2 deletion
Reply With Quote
  #4  
Old Sun Jun 12, 2011, 06:05 PM
freedom99 freedom99 is offline
Member
 
Join Date: Jun 2011
Location: Leamington, Ontario, Canada
Posts: 40
Your Mom

Hi Vicky;
I agree with Chirli to give your mom those little special things, especially those that involve touch. A foot massage is awesome and also massaging the neck and back. Touch will bring a special connection to your mom that will lift her spirits to a feeling that cannot often be described.
On the other hand when I talk to other patients in the waiting room at the Oncology treatment centre to encourage them I know by intuition when to keep quiet.
I visited a chronically ill man at the nursing home every Sunday for a year. There wasn't a lot of touching but just to sit with him for 30 minutes and not really say a lot meant to him that someone cared and he was not abandoned.
__________________
Wife 63, June 2010 MDS (refr anemia - excess blasts type-2) PLTs 11,000/μl with giant forms 2 TF/wk. Hgb kept at 80g/l with 1TF per 2 weeks. 9% blasts 2 cytogenic abnormalities del(5)(q22q35) + inv(20)(p11.23q11.21) 3 cycles Vidaza no effect. June 2011 to AML WBC to 67 blasts and Aur rods in blood.
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
MDS - VA assigns diagnostic code 7725 Tommy Daniels MDS 4 Sun Jan 22, 2017 04:51 PM
Mom recently diagnosed with MDS. rkp MDS 8 Fri Aug 17, 2012 01:36 PM
Mom had allo-SCT to treat secondary MDS (RAEB1). Relapsed at 60 days and now has AML TheBirthofLove MDS 4 Tue Nov 15, 2011 03:25 PM
Mom dx with AA possible MDS Lamilu Questions and Answers 21 Thu Mar 4, 2010 03:45 PM


All times are GMT -4. The time now is 08:48 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