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MDS Myelodysplastic syndromes

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  #1  
Old Sat Aug 23, 2008, 01:43 PM
kvichi kvichi is offline
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Join Date: Aug 2006
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Dads MDS has progressed to Leukemia

my dad was diagnosed with mds 6 years ago. He had another bmb last week and his doctor told him yesterday that he now has leukemia and she gave him 30 days to live. Needless to say we are shocked and devastated. I don't have any details because he could not talk to me last night. I'm wondering what we can expect over the next month and if anyone can give me advice on how to help my dad and my family deal with this news.

thank you,

Kim
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  #2  
Old Sat Aug 23, 2008, 03:28 PM
Zoe's Life Zoe's Life is offline
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Location: Logan, Ohio
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Kim,

I am so sorry to hear about your dad. Take lots of time to be together and share love with one another. I will be praying for you.

Zoe
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Diagnosed MDS-RA 5q- at age 47 (November 2006). Aranesp 2/07, good response.
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  #3  
Old Sun Aug 24, 2008, 10:21 AM
Dick S Dick S is offline
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I don't think there is a pat solution to that situation. Start with lots of L-O-V-E and the rest I pray you will figure out what to do. After that, if and when it does happen, allow yourself time to grieve, I learned that when my mom died.
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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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  #4  
Old Sun Aug 24, 2008, 06:28 PM
Margie Margie is offline
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Dads MDS has progressed to Leukemia

I am sure that you family has already considered this, but if not, you might want to contact hospice care if your father is at home. In the weeks before my mother died, hospice was a Godsend to me and to my mother.
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  #5  
Old Sun Aug 24, 2008, 09:04 PM
Debra Debra is offline
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Join Date: Dec 2007
Location: McKinney, TX
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My heart goes out to you at this difficult time. You and your family will be in my thoughts and prayers.
I agree with Margie about hospice. You will need all the support you can get, and hospice is wonderful.
Spend time together, love each other, and share memories.
Talk to the doctors, and ask them what to expect over the coming days. It is the least they can do for you.
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  #6  
Old Mon Aug 25, 2008, 01:33 AM
Alison Alison is offline
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Join Date: Apr 2008
Location: Nelspruit, South Africa
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Dear Kim

My Dad was informed his MDS had progressed to AML 6 weeks ago. Subsequent to that we tried chemo, as well as to find a bone marrow match in is siblings. Unfortunately all attempts were unsuccessful. We were informed two weeks ago that he has 1-2 months but he only lasted one week. We, in consultation with him decided to take him off antibiotics as his skin was extremely sensitive and his J-line became blocked. We used this last week to spend as much time as possible with him and he went peacefully on Friday. He had no pain, just sensitivity of the skin.

In this process we contacted hospice and if we'd had time there is no doubt that we would have brought him home (they were even prepared to set him up at home and assist my Mom to care for him). They will offer emotional support to all of you. You are welcome to ask me any additional questions if you have any - you can use the private messages option.

All of the best during this difficult time,
Alison
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Alison, daughter of Rod aged 61; Dx May 2007; was on Neupogen and Eprex Aug - Dec '07; Vidaza recommended 6 cycles starting Jan '08, only 5 cycles completed. Chemotherapy commenced: July '08 - Feb - '09. Cytarabine & Daunarubicin. Transfusion dependent.
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