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MDS Myelodysplastic syndromes

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  #1  
Old Wed Aug 14, 2013, 04:43 PM
Rachlm927 Rachlm927 is offline
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My Mommy's MDS Story

Hello, my mother passed on July 30th from MDS, and I felt it was important to post my story here. She was diagnosed 8 weeks earlier, and such little information on MDS stories on the internet. I visited this board several times per week, reading posts, searching for information, looking for similarities in cases, and it was very helpful. Hopefully I can return the favor to someone else in need of information.

My mother’s story really started 14 years ago, at age 45. Out of nowhere she has a stroke. After many tests, the conclusion was she had a rare cancer that her bone marrow produced too many platelets (ET – Essential Thrombocythemia). After a few years of getting this under control, she started to have issues with her stomach, so bad she wouldn’t leave the house. She was soon diagnosed with severe Crohn’s. Finally after 8 or so years of constant hospital visits, doctor’s appointments, a few surgeries….she seemed to be improving and was living a normal life for about 2 years, even going back to work full time.

She then started to have issues in her legs a few years ago, difficulty walking. After having to leave her job, and trying many different therapies, she had a below the knee amputation. A few weeks later she had a bad infection and had to go back to cut above the knee. She was never the same after that. Her depression was bad. She didn’t understand why so much bad happens to her. She was never able to walk using a prosthetic, and was confined to a wheel chair. Not easy for someone with Crohn’s disease. But, sadly the worst was yet to come…

On Mother’s Day this year, she ended up in hospital. No energy, delirious, no control of bowels/not aware….my father called 911. First they thought she had a heart attack because her hemoglobin was so low. Her Oncologist came in to yell at her, my mother hadn’t seen her in almost 4 years, and so she did a bone marrow biopsy. After a few transfusions her numbers returned to normal, and she was back home in 4 or so days.

A few weeks later we went back to Oncologist office, to review the results of the BMB, and were told she had MDS. It was a 3 – 4 minute conversation, didn’t seem so bad, we were told she would start chemo following week (Vidaza and Revlamid) and her best option would be a bone marrow transplant. “You are young, you can beat this” is what she told us…. It wasn’t until I got home and did some research that I learned how serious the disease is.

Well, my mom never started the chemo the following week. Instead she ended up in hospital again, needing a transfusion, but having a fever. Looking for infection. Every test possible, I know a lot of you have been through this game.

A week later, she was out and starting chemo. Few days into Vidaza, back in hospital again. Short stay after getting a few transfusions. Home a few days and finished Vidaza, next day back in hospital. This stay ended up being almost 3 weeks. Then discharged to a nursing home (we couldn’t physically take care of her) and back in hospital 4 days later with pneumonia.

I won’t bore you with the details: transfusion, fevers, can’t find infection, repeat. Long story short, her body was too weak to handle the treatment. She couldn’t fight infection after weeks of not being on chemo, how could she ever survive chemo? During this time, it was getting scary. She started seeing things, talking to people not there, not eating, not caring about her appearance to others, sometimes mean. It just wasn’t her at all. I even begged them to do a brain scan, I thought there had to be something wrong with her brain. Nothing showed on the scan, and now I know it was the dying process starting.

She was also in extreme pain (a lot of pain due to the Crohn’s; but the MDS didn’t help) and it was so hard for us to see her cry in pain. She just kept saying she wanted to go home.

After numerous talks with oncology, hospital doctors, and palliative care doctors, we decided to stop treatment and take her home with hospice support. When asked how long she had left, the doctor said 1 – 6 months, guessing she would be closer to the month. We had her home 2 days and the hospice nurse said we couldn’t manage her pain, and took her to hospice house. She passed 2 days later.

It’s not fair. She was too young (she turned 59 a few weeks ago).

Yes I am angry, and am going to grief counseling.

I can not say enough good things about the people of Hospice. They are most compassionate, loving, understanding people I ever met. They took such good care of my mother, and me the caretaker.

I know this post is long, trust me I could write 10 pages of details, conversations, notes.

Only advice I can give is to live life like any day could be your last. And treat others as if today may be their last day. I have so many regrets of things I never got to say to my mommy. It’s hard to even remember our last lucid conversation.

Because my mother didn’t go to her doctor for several years, by the time of the diagnosis it was too late for her. With all her other issues, her chance of survival was cut in half (as per the doctor). I am grateful for her last day, at the hospice house. We played her favorite music, told stories, laughed, cried. Most importantly holding her hand while she passed.

I hope she is at peace now, pain free, in a healthy, disease free body.
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  #2  
Old Wed Aug 14, 2013, 05:27 PM
sbk007 sbk007 is offline
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So sorry. You know you've been through a lot you have every right to have those feelings. It takes a lot of time to accept, so give yourself that and take care of yourself.
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  #3  
Old Thu Aug 15, 2013, 02:18 AM
Neil Cuadra Neil Cuadra is offline
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Rachlm927,

It's so hard to hear stories like yours and your mother's, but I'm glad you told us what happened because you deserve to be heard and to be angry about the hand that fate dealt your family. And perhaps we all we need the sobering reminder about what a serious disease MDS is, and even more so in combination with other health problems.

MDS isn't fair and it leaves so many families with regrets about health failures that they couldn't see coming. In so many cases, the doctors have no foolproof way of predicting when treatments will or won't be tolerated and how much time any of us have left.

You lost your mother at too young an age. I'm glad hospice was a positive experience, as we hear time and time again. If only you could have had more than a few days of that final care, when you could simply be together.
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  #4  
Old Thu Aug 15, 2013, 10:37 AM
Sally C Sally C is offline
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Rachlm927,
I am so sorry for your loss and pain. Thank you for sharing your story.
I wish you God's Comfort as only He can.
God Bless,
Sally
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  #5  
Old Thu Aug 15, 2013, 01:49 PM
gramous gramous is offline
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I'm so sorry to hear about your loss. It's so hard to manage chronicals disease like crohnn, essential thrombocytosis, mds, so all those in one person... Your mother can be proud of their family and you can be proud of your mother for the courage that she had the last years. It's so essential to live the difficulty of life in family, together. Friendly regards. béné
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boyfriend with RARS-T dx 11/02//dx : hb 11,5; plt 870000, wh : 6500//Before fasting cure (13/04): hb: 8,9; plt 2200000; white:6000//After fasting cure (14/09): hb 12,5; platelets 400000, wh 3000.//Now (15/08) : hb : 11,plt : 650000, wh 3000// hydrea 1c/day and cardioaspirin, 1c/day,age: 56 y.
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  #6  
Old Fri Aug 16, 2013, 07:55 AM
Cheryl C Cheryl C is offline
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My deepest sympathy to you in the loss of your mother. You had so little time to prepare for this. As Neil said, it is a timely reminder to us all that MDS is a serious illness. May you feel God's comforting presence as you travel through the grief process.
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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. On watch and wait since Feb 2012. IVIg 5-weekly. BMB Feb 2014 - no blast transformation. 2018 still stable.
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  #7  
Old Tue Aug 20, 2013, 05:39 PM
usaf1125 usaf1125 is offline
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Quote:
Originally Posted by Rachlm927 View Post
Hello, my mother passed on July 30th from MDS, and I felt it was important to post my story here. She was diagnosed 8 weeks earlier, and such little information on MDS stories on the internet. I visited this board several times per week, reading posts, searching for information, looking for similarities in cases, and it was very helpful. Hopefully I can return the favor to someone else in need of information.

My mother’s story really started 14 years ago, at age 45. Out of nowhere she has a stroke. After many tests, the conclusion was she had a rare cancer that her bone marrow produced too many platelets (ET – Essential Thrombocythemia). After a few years of getting this under control, she started to have issues with her stomach, so bad she wouldn’t leave the house. She was soon diagnosed with severe Crohn’s. Finally after 8 or so years of constant hospital visits, doctor’s appointments, a few surgeries….she seemed to be improving and was living a normal life for about 2 years, even going back to work full time.

She then started to have issues in her legs a few years ago, difficulty walking. After having to leave her job, and trying many different therapies, she had a below the knee amputation. A few weeks later she had a bad infection and had to go back to cut above the knee. She was never the same after that. Her depression was bad. She didn’t understand why so much bad happens to her. She was never able to walk using a prosthetic, and was confined to a wheel chair. Not easy for someone with Crohn’s disease. But, sadly the worst was yet to come…

On Mother’s Day this year, she ended up in hospital. No energy, delirious, no control of bowels/not aware….my father called 911. First they thought she had a heart attack because her hemoglobin was so low. Her Oncologist came in to yell at her, my mother hadn’t seen her in almost 4 years, and so she did a bone marrow biopsy. After a few transfusions her numbers returned to normal, and she was back home in 4 or so days.

A few weeks later we went back to Oncologist office, to review the results of the BMB, and were told she had MDS. It was a 3 – 4 minute conversation, didn’t seem so bad, we were told she would start chemo following week (Vidaza and Revlamid) and her best option would be a bone marrow transplant. “You are young, you can beat this” is what she told us…. It wasn’t until I got home and did some research that I learned how serious the disease is.

Well, my mom never started the chemo the following week. Instead she ended up in hospital again, needing a transfusion, but having a fever. Looking for infection. Every test possible, I know a lot of you have been through this game.

A week later, she was out and starting chemo. Few days into Vidaza, back in hospital again. Short stay after getting a few transfusions. Home a few days and finished Vidaza, next day back in hospital. This stay ended up being almost 3 weeks. Then discharged to a nursing home (we couldn’t physically take care of her) and back in hospital 4 days later with pneumonia.

I won’t bore you with the details: transfusion, fevers, can’t find infection, repeat. Long story short, her body was too weak to handle the treatment. She couldn’t fight infection after weeks of not being on chemo, how could she ever survive chemo? During this time, it was getting scary. She started seeing things, talking to people not there, not eating, not caring about her appearance to others, sometimes mean. It just wasn’t her at all. I even begged them to do a brain scan, I thought there had to be something wrong with her brain. Nothing showed on the scan, and now I know it was the dying process starting.

She was also in extreme pain (a lot of pain due to the Crohn’s; but the MDS didn’t help) and it was so hard for us to see her cry in pain. She just kept saying she wanted to go home.

After numerous talks with oncology, hospital doctors, and palliative care doctors, we decided to stop treatment and take her home with hospice support. When asked how long she had left, the doctor said 1 – 6 months, guessing she would be closer to the month. We had her home 2 days and the hospice nurse said we couldn’t manage her pain, and took her to hospice house. She passed 2 days later.

It’s not fair. She was too young (she turned 59 a few weeks ago).

Yes I am angry, and am going to grief counseling.

I can not say enough good things about the people of Hospice. They are most compassionate, loving, understanding people I ever met. They took such good care of my mother, and me the caretaker.

I know this post is long, trust me I could write 10 pages of details, conversations, notes.

Only advice I can give is to live life like any day could be your last. And treat others as if today may be their last day. I have so many regrets of things I never got to say to my mommy. It’s hard to even remember our last lucid conversation.

Because my mother didn’t go to her doctor for several years, by the time of the diagnosis it was too late for her. With all her other issues, her chance of survival was cut in half (as per the doctor). I am grateful for her last day, at the hospice house. We played her favorite music, told stories, laughed, cried. Most importantly holding her hand while she passed.

I hope she is at peace now, pain free, in a healthy, disease free body.
May God be with her, she is in a better place, free from pain. Don't be angry, it's a very odd condition affects everyone different.
__________________
82 yr. old male. Diagnosed in 2003. Started Blood infusion 1/5/2004, average of 2 units every 2 weeks. Inject Procrit weekly 40,000 ML. I have had 344 units of PRC. E Mail leojean@comcast.net
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  #8  
Old Tue Aug 20, 2013, 07:28 PM
Whizbang Whizbang is offline
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Rachlm927,

So sorry for your loss... Your mom will be in my prayers...

The healing must begin with you... Don't look for someone to blame, and don't blame yourself...

One thing that helps me make sense of things, is the thought that no matter who you are kind / not so kind, rich / poor, etc. makes no difference...

It rains on everyone regardless of whether they are just or in-just...

Your Mom's life has ended here on earth, not yours... (I lost both my mother & father within 6 months of each other, both to cancer some 5 years ago) My father died 3 weeks after being diagnosed with Pancreatic cancer, my mother from lung cancer (second hand smoke from my father) they were 69 & 60 years young...
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Married, father of three daughters; now 46; diagnosed w/ Major form MDS 6/18/2013; had low counts across the board; Multiple chromosome abnormalities; Finished 2nd round Dacogen 9/13; SCT - Oct. 31, 2013; Sibling match 10/10 ; 5.5% blasts down to 3%, now 1% (post BMT)
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  #9  
Old Wed Aug 21, 2013, 08:20 AM
usaf1125 usaf1125 is offline
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Join Date: Dec 2007
Location: Stoughton, MA
Posts: 66
very good advise. As the expression is "when you get lemons, make lemonade" Has you said "Don't blame yourselves" .Hang in and keep fighting, do not give up. We never asked for this D--- disease, I accept that I have it, but I will not let it rule my live.
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82 yr. old male. Diagnosed in 2003. Started Blood infusion 1/5/2004, average of 2 units every 2 weeks. Inject Procrit weekly 40,000 ML. I have had 344 units of PRC. E Mail leojean@comcast.net
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  #10  
Old Wed Aug 21, 2013, 09:38 PM
RachaleM RachaleM is offline
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I can see that you miss your mom

Hello Rachlm.

I am so sorry for your loss. I can see that you did everything in your power to care for your Mom. She was so blessed to have you and it sounds like you were blessed to have her. May God bless you with peace and comfort. I understand what it is like to be in excruciating pain, my own children could barely handle hearing my cries. It sound like your your Mom was ready to return home, it also sounded like she had completed her mission here. Please take good care of your of yourself.

By the way, I am also a RachaleM I am new to the forum was just DX in Nov. 2012 with MDS/MPD-UC, I too got to the point that I thought by the amount of pain that I would soon go home, but I have 4 children that I am still yet raising. In my faith we are taught that we have an appointed time upon this earth and that we don't leave until the appointed time that we are suppose to. I hope that you are comforted.

Rachale M
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  #11  
Old Sat Oct 19, 2013, 04:34 AM
Honey Honey is offline
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Ummmm

Rachlm I hope your family has started to heal from your mother's loss.

Honey
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  #12  
Old Sat Oct 19, 2013, 09:13 AM
alawe alawe is offline
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So sorry to hear that...
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MDS 5q del---low WBC---boycott NO Treatment----5 years & 8 month.
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  #13  
Old Tue Oct 22, 2013, 10:37 PM
Lori Patrick Lori Patrick is offline
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Posts: 166
I'm very sorry to hear of your loss. I do my best to live each day as if it were the last. Try to not beat yourself up over things left unsaid. I recently put my father in a nursing home for dimentia and I have to work on exactly this myself. Prayers for comfort to you and your family.
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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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  #14  
Old Mon Oct 28, 2013, 03:10 PM
Jill2008 Jill2008 is offline
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I'm so sorry for your loss. Having been diagnosed with MDS at 47 and also being the mother of three daughters, I know how your Mom must have felt. My journey has been a tough one too and at times I didn't think I would survive. Sometimes I didn't want to! She was a fighter and I know she is looking down from heaven with pride because you are an amazing daughter! Thanks for sharing your story.
Hugs, Jill
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Jill, 58 y/o female dx with MDS-U June 2008, IPSS:Int. 2. Allogeneic SCT May 25, 2010. Relapsed January 2011. Started Vidaza (azacitadine) Feb. 2011; Currently on cycle #58 , IV, 5-days every six weeks. WBC 5.3, Hgb 13.0, PLT 110 (2/16/18)
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