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  #1  
Old Sun Mar 10, 2013, 10:16 PM
Shinsma Shinsma is offline
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Location: Wexford, PA
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My poor Donnie passed away on Wednesday

I have been following the forum for the past year as my husband was moving along with his MDS. Diagnosed in 2008, He had no luck with the Vidaza, living on transfusions, he had 46--then moved to Dakogen, which literally was his downfall. Three hospital stays, 6 days in ICU and he is gone. He got an infection, then went into AFib, pneumonia and died Wednesday, March 6th at 10:21 AM. He fought so long and hard but at age 73 seems like everything was against us. He was very young looking and even in death still looked 10 years younger. I am devastated and don't know how I'll get through the next days.
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MaryAnn wife of Don diagnosed 2008 Vidaza didn't work
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  #2  
Old Sun Mar 10, 2013, 11:10 PM
slip up 2 slip up 2 is offline
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Shinsma

So sorry about your husband.
You will get thru this it will be difficult, you will cry,laugh and be angry it is all part of this thing we know as life.

My husband and best Pal died in July of last year and i miss him so very much, he is always with me, i still get angry at this disease but have learned so much about life and living because of the disease.

To-day, was taking some stereo speakers from the TV and there were wires all over the place, that was usually his job but it has become mine, now i am one that would have ripped the wires, but to-day i took the time to unwind and be careful, started to laugh at this...it was like he was doing it...he did teach me patience.

His ashes are in the kitchen with his favorite baseball cap on top, sometime i get angry and tell them off, sometime i laugh, and sometime it is just peace. Some of his ashes i took to a couple his favorite beaches.

You will in time find your own peace.

Grief lasts a long time a lifetime actually.

Each person is unique and each person grieves in their own way...you will find what is right for you.

Take care of yourself and do try to eat a proper diet.
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  #3  
Old Sun Mar 10, 2013, 11:51 PM
Neil Cuadra Neil Cuadra is offline
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MaryAnn,

I'm so sorry to hear such sad news. You have my sympathies. This is not the type of loss that anyone can really be prepared for.

Doctors may think that it's an accomplishment for MDS patients to live even a few years after an MDS diagnosis, but we know that this disease takes our loved ones from us much too soon, especially for someone like Don who looked (and probably felt) younger than he was.

There's no way to fill the void after such a loss but we know that time softens every blow and good memories of years together can be a comfort. I hope you find peace soon.

I also hope that you have other family and friends around to help you cope. If you feel up to it, you could tell us more about Don's life, how long you were married, and what made him special.
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  #4  
Old Mon Mar 11, 2013, 12:03 AM
Beth Beth is offline
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Shinsma,

My heart goes out to you. My husband also is getting worse every day. He was diagnosed in 2007. The last six months have been a downhill slide, now unable to walk - in and out of hospital. All cell lines down, particularly red and platelets. The transfusions never last over a week.

I will keep you in my thoughts and prayers. This disease is such a painful thing to watch. Vidaza did not help my husband either, though Dacogen did for 2-1/2 yrs. Since then nothing has helped. I hope and pray they will find a cure for this disease soon. My heart hurts for you and I just had to take a minute to write to let you know there are people out here feeling for you and thinking of you.

Much love and hugs,
Beth
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  #5  
Old Mon Mar 11, 2013, 09:57 AM
Sally C Sally C is offline
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Dear MaryAnn.
I am so very sorry for your loss.
May God bring you peace and comfort.
God Bless,
Sally
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  #6  
Old Mon Mar 11, 2013, 01:25 PM
BrianFlaigmore BrianFlaigmore is offline
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My wife and I are deeply sorry for your loss. We hope and pray that you have family or friends to help you through this time. If not, please feel free to contact us.

Brian and Maddie
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26m Mystery liver failure 6/11 treated with prednisone. Falling counts, Rituxan attempted for Evans syndrome 11/11. Tx dependent and SAA dx 12/11. hATG 2/12, no response. MUD BMT 5/6/12. Living life!
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  #7  
Old Mon Mar 11, 2013, 02:48 PM
KathyM KathyM is offline
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MaryAnn-
I am so sorry. I wish had "better" words to comfort you - but know that many people are thinking of you and your loss.

I also hope that you have a good support system - I am also available to lend an ear.
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Kathy, wife of Dennis (58 yrs old) diagnosed October 2012 w/MDS; bone marrow biopsy confirmed significant fibrosis;blast cells of 5%-10% of total cells, high risk refractory anemia w/ excess blasts (RAEB1); 3 cytogenetic markers; +1, -7, and +21
http://www.caringbridge.org/visit/dennismolyneaux
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  #8  
Old Mon Mar 11, 2013, 03:26 PM
bebop bebop is offline
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I am so very sorry for your loss. Like you and others here I think we all hate this disease. praying for peace and comfort for you and your family.
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  #9  
Old Mon Mar 11, 2013, 04:38 PM
Al's Wife Al's Wife is offline
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MaryAnn,

I am so sad to hear of your Donnie's passing. Just try and take it one day at a time, that's all any of us can do. Hopefully the memories you and your husband shared during the good times will sustain and comfort you.
This is a road that none of us would have chosen - whether a caregiver or the patient.
God bless and comfort you.
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Linda, Al's wife, 75; dx MDS 5/2010; Vidaza 6/2010; ARRY614 & Sapacitabine clinical trials at Emory, no results, stopped 12/2011. Had BMB at NIH on 6/5/12, blasts 10-15% so he's not eligible for trial there. :eek Promacta trial, Tampa, blasts 25-30% 8/17/12 AML, trying Dacogen now and praying.
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  #10  
Old Mon Mar 11, 2013, 09:41 PM
sandem01 sandem01 is offline
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I am so sorry to hear you lost your husband. I have some idea of what you are going through, my dad passed away in November and had some similar stats (Dacogen worked for 2 1/2 years but Vidaza did nothing). My mother is having a hard time adjusting, but my sister, my mom's many friends and I have been trying hard to keep her busy. It has been very hard, but we are all getting through it and I want you to know that eventually things will get easier after some time goes by.
Jill
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Jill, daughter of Joe, age 76; dx mds RAEB-2 in 3/2010; Low wbc and low hgb, platelets normal; Put on Dacogen for 1.5 years, worked great until 3/12; Vidaza treatment next, 5 rounds - no improvement. Passed away from mds 11/13/12 after a long fight
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  #11  
Old Tue Mar 12, 2013, 09:35 PM
Lori Patrick Lori Patrick is offline
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Prayers go out for your comfort at this time.
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Lori, female age 53 dx MDS-RAEB-II 15% blasts 10-2010. Induc Chemo 10/14/10 for 7 days - results unacceptable so 5 additional days chemo. Complete Remission 12/10/10!! SCT 1-11-11 remission achieved!!! BMB 1-29-11 100% Donor! cgvh eyes,skin (Caringbridge.org/visit/loripatrick)
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  #12  
Old Wed Mar 13, 2013, 08:07 AM
LoveRapheal1 LoveRapheal1 is offline
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In Spirit

I don't know if you have any type of religion but I will pray over you and remember that the spirit doesn't die but lives here with us and with our memories. I lost my grandfather from cancer. He was a hero. He saved 41 people during World War 2. I didn't know that. He was also a kind man. I don't believe that he is dead but that his courage and spirit live with me. I often go to light candles for him and pray to God and the angels about how grateful I was to have him.
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  #13  
Old Wed Mar 13, 2013, 09:25 PM
mymomismyhero mymomismyhero is offline
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My Thoughts and Prayers Go Out to You

MaryAnn,
I just lost my mom on 28 Feb. She, too, was only 73 and looked amazing. Though she had lost a great deal of weight, other than the MDS and going on oxygen in November, she was healthy. My mom's downfall was also Dacogen, how did it effect your husband? What is AFib? What is 46? I keep asking myself if maybe a bone marrow transplant at age 73 would have been worth the risk even with the 40% mortality rate. Do you have any bitterness toward any of his doctors?

I am struggling with the loss of my mom and feel so helpless. I keep thinking I should have demanded this or that. I not only lost my mom, I lost my best friend.

Thinking of you,
Sheri
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  #14  
Old Wed Mar 13, 2013, 11:09 PM
bebop bebop is offline
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Sheri hon please try not to think of what if's. I know that is much easier said than done. I beat myself up so bad when I lost my Dad for that. In the end I realized there was nothing more that I could have done. Please take some time for yourself. (((((hugs)))))
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  #15  
Old Fri Mar 15, 2013, 05:03 AM
Cheryl C Cheryl C is offline
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Dear Mary Ann

My deepest sympathy, thoughts and prayers go out to you for your loss.
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Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. Watch and wait from Feb 2012. IVIg 5-weekly. New diagnosis Oct 2019 AML 23% blasts in marrow, 10% blasts in peripheral blood.
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