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MDS Myelodysplastic syndromes

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  #1  
Old Thu Oct 23, 2008, 12:11 PM
vicki vicki is offline
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Location: Smithtown, NY
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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
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  #2  
Old Fri Oct 24, 2008, 10:28 AM
Dick S Dick S is offline
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Location: Florida
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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.
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Dick S, diagnosed Feb. 2008 with MDS. Last BMB April 2016. New diagnosis is CMML stage 1.
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Old Sat Oct 25, 2008, 03:24 AM
Chirley Chirley is offline
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Location: Logan City Australia
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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
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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
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  #4  
Old Sun Jun 12, 2011, 05:05 PM
freedom99 freedom99 is offline
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Location: Leamington, Ontario, Canada
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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.
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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.
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