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MDS Myelodysplastic syndromes

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  #1  
Old Tue Jun 19, 2012, 11:10 AM
imvalfan imvalfan is offline
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Unhappy Worried about Mom

My mother was diagnosed with MDS about ten years ago when she was 75. She has had several treatments from steroids to thalidamide to vidaza and dacogen. Vidaza put her in remission for 2 years. Her oncologist/hemotologist started revlamid treatments but stopped after my mom platlets dropped and was hospitalized with pleuracy on her left lung due to CHF. She also has Afib. She's been in the hospital 3 times this year with the fluid buildup and low red counts and she is getting weaker by the day. Her appetite isn't good and she sleeps most of the time. I live closeby so I see her every day. I am worried about what to do since she doesn't want to go to a nursing home. The dr has mentioned hospice to me once so far but I am afraid she won't accept any help since she doesn't like people coming into her home she doesn't know. We don't have any nurses in the family and don't know any either. I don't know what to expect and need some giudance. I hate leaving her alone.
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  #2  
Old Tue Jun 19, 2012, 05:17 PM
Neil Cuadra Neil Cuadra is offline
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imvalfan,

Living ten years with MDS starting at age 75 is quite an achievement but I know that you'd like your mother to do even better, retain her strength, and stay out of the hospital. I hope her doctor is both experienced and caring because quality of life and end of life issues are very hard to deal with for everyone involved. You might want to seek out people associated with the hospital who can give you personal assistance or advice: social workers, gerontologists, or hospice managers.

Almost everyone who enters hospice finds it to be far superior to the other choices: frequent hospitalization, overtreatment and unnecessary tests, nursing homes, or a lack of care at home. You are right to think that leaving her alone at home is an unsuitable choice, given her age and health condition.

I know how intrusive it sounds at first to have a stranger in the house as caregiver, but hospice workers are typically such wonderful people that they quickly become friends and companions, not strangers. If your mother is still capable of making her own medical decisions then she should have her say and have her way, but I think if you encourage her to give home healthcare or hospice a try she'll very quickly find that she appreciates the help and company. I've seen people make this transition and go from resentment to acceptance to appreciation.

It also avoids the guilt and impracticability of having adult children try to act as full-time nurses, without having either training or time for that job. Once your mother has a caregiver with her, your visits will give her emotional support and you can enjoy each other's company as family, rather than spending all of your time in the role-reversal of a child as primary caregiver to a parent.
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  #3  
Old Sun Jun 24, 2012, 05:05 PM
bebop bebop is offline
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my dad would not accept hospice either but it was ok since his wife was a home health care worker. if at all possible I would encourage her in that.
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  #4  
Old Mon Jun 25, 2012, 05:25 PM
milliken2 milliken2 is offline
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Check with your Office on Aging

Bebop;
As an RN, I did a year of Hospice nursing. It was both happy and sad, because if you are any kind of a nurse - that patient becomes a part of your family. Instead of a nursing home - is there an 'extended care facility' nearby that has a qualified staff? Sometimes just the mention of nursing home scares them. Too, check with your local office on aging. They usually have a list of qualified caregivers that have had background checks, and maybe the daily company/care/conversation might just help the appetite. Also, does the Dr. have her on Marinol? If not - ask about it, because it helps to improve the appetite and also curb any nausea at the same time. I know I help care for an elderly lady, and just by stopping by - and 'have on hand' something to eat - she always comes to sit with me and eat whatever I brought - from a donut to an entire meal. And it is someone different - not that she doesn't want to see you - but with a new face, she might react differently. Good Luck To You.
Beth
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Beth - R.N., B.S.N and wife of recently diagnosed husband who has been classified at stage 4 MDS. and I can't help the one I love the most.
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  #5  
Old Wed Jul 11, 2012, 01:04 PM
imvalfan imvalfan is offline
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Cool

Thanks Beth. I will ask about the Marinol. She doesn't like taking any more meds than she has now so it might take some convincing. She's been sleeping later and later each day and becomes agitated when I disturb her by calling to wake her to take her meds and eat. I reduced my work hours to help her in the afternoons because I was getting overwhelmed working full time and trying to squeeze everything in. I called a health care facility and they gave me some pricing for aids. They are bonded, licensed and have background checks. They need a doctors orders though and so far the doctors are not forcing anything. She fell a couple of times when her counts were down and I was kind of angry because she wasn't wearing her lifeline. She spent one night sleeping on the back porch floor because she didn't have a phone near her or her lifeline on. I feel like I should move in with her but I know that would only stress both of us out. She likes being alone and has told me numerous times. All I can do now is wait till she can't get out of bed one day and then explain she needs to make a decision now that she needs help in the home. I think shes hoping something happens fast to take her someday but I am not positive this will happen even though most of her brothers and sisters died from stroke. Thanks for all the replies....God Bless.
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  #6  
Old Wed Jul 11, 2012, 06:01 PM
bebop bebop is offline
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one thing I learned from my Dad is he did it his way. You can't force them to do anything with their care really. of course he did not live alone and that helped me alot. fortunately he went really fast once his treatments stopped. no lingering at all. laughing and talking one minute and the next he was gone. I don't know where your mom is in her treatment but know you are not alone. you have all of us here to support you.
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  #7  
Old Sat Nov 3, 2012, 11:00 AM
imvalfan imvalfan is offline
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Mom stopped treatments and meds

October 18th my mom made the decision to stop transfusions because they are no longer helping her after a discussion with the doctor. We called hospice and made arrangements for mom to always have someone home with her. She has also stopped taking all her medications and said to me "what's the point". She was in bed for two days and suddenly last night she got up and we used her rolling walker to get her to the recliner. Oxygen is on 3 litres now. She refuses meds and says she has no pain. Every day I pray for her relief. Last transfusion was October 10th. She had 3 units total.
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  #8  
Old Sat Nov 3, 2012, 03:47 PM
cathybee1 cathybee1 is offline
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I know this is very tough for you, accepting our parent's wishes at times like this is sometimes one of the hardest things for a child. I'm so glad she is not in pain. I'm sending prayers your way.
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Catherine, wife of Bruce age 75; diagnosed 6/10/11 with macrocytic anemia, neutropenia and mild thrombocytopenia; BMB suggesting emerging MDS. Copper deficient. Currently receiving procrit and neuopogen injections weekly, B12 dermal cream and injections, Transfusions ~ 5 weeks.
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  #9  
Old Sat Nov 3, 2012, 10:28 PM
bebop bebop is offline
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I know what you are going thru. My Dad's dr told him the transfusions weren't working anymore so they were stopped on April 5. Mind you his platelets were already terribly low at the time along with his blood level being under 8. So many things can happen at this point so please spend as much time with her as you possibly can. Say the things you want to say now! I will be here for you along with the rest of the gang! hang in there hon. ((((hugs)))) Dad didn't have any pain until a couple of days before he passed so he took tylenol. no hospice was involved.
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  #10  
Old Sun Nov 4, 2012, 10:08 AM
imvalfan imvalfan is offline
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My mom complains of leg pain almost every day. She only takes tylenol as well. Thank you both for your support. If she leaves in peace I will be content that she is in a better place with my dad whom I lost about 18 months ago to COPD.
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  #11  
Old Sun Nov 4, 2012, 09:56 PM
bebop bebop is offline
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Dad grew very very weak. his passing was so easy. I pray that when your mom's time comes for it to be as easy as Dad's was. Take comfort in where she is going. When I think of my Dad now all I can see is him walking with Jesus and his mom having a grand time! I pray you will be able to think of her that way. They don't want us to grieve too much.

Elaine
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  #12  
Old Sat Nov 10, 2012, 08:17 AM
imvalfan imvalfan is offline
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Its been a whole month since mom had her last transfusion. She cannot sit up long enough to use the commode now. Two days ago she fainted trying and we had paramedics come to get her back to bed. She complains she feels really heavy now. Still lots of leg and hip pain but she will only let me give her tylenol. Feeding her in bed now too. She can't sit up without feeling dizzy. Keeping her oxygen at 2 litres no matter what happens. Bumping it up to 3 will only prolong things. I am so glad I hired aides for nighttime. It gives me time to rest so I can make the most of our time together and be supportive when she needs me.
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  #13  
Old Sat Nov 10, 2012, 05:36 PM
cathybee1 cathybee1 is offline
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I wish this was an easier time for your mom, and I'm glad you're able to get some rest yourself. I am so sorry she is experiencing leg and hip pain on top of everything else, my husband has pain in those places too when his hemoglobin gets low. I understand that your mom might not want to take painkillers because of the grogginess. The hospice people are the best at figuring out how to make people comfortable. I suspect Tramadol has already been suggested, just to let you know our experience is it doesn't have quite so much of a sedative effect.
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Catherine, wife of Bruce age 75; diagnosed 6/10/11 with macrocytic anemia, neutropenia and mild thrombocytopenia; BMB suggesting emerging MDS. Copper deficient. Currently receiving procrit and neuopogen injections weekly, B12 dermal cream and injections, Transfusions ~ 5 weeks.
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  #14  
Old Tue Apr 2, 2013, 04:45 PM
imvalfan imvalfan is offline
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Unhappy Mom's Passing

My mom's difficult death came November 17th 2012 shortly after noon that Saturday. I was there with my daughter and we witnessed her passing and I will never ever forget my mom's face and the suffering she endured to her last breath. She refused pain meds until she was unresponsive and couldn't stop us from giving them to her. I had to sneak them to her before that and she didn't want a hospital bed so she was in her own bed which was what she wanted. She only let the hospice nurses come by once a week so I did my best to keep them in the loop by phone. I didn't expect her to pass that day but my daughter knew better. I think I thought she had a few more days. I never knew how much pain she was in until she started moaning the last 30 minutes. She had filled up with fluid at the end and it difficult to see and listen to. This was the first time I ever witnessed a death and I fell apart totally at the end. My daughter was stronger than me. At the wake I didn't recognize my mom in the casket. I thought it was someone else. She had been thru so much she didn't even look like herself. God Bless all of you dealing with this horrible disease.
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  #15  
Old Tue Apr 2, 2013, 05:45 PM
bebop bebop is offline
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I am so sorry to hear of her passing. My Dad looked different too. he was very dehydrated and had lost so much weight. He looked 100 years old. I pray for your peace and comfort. It is hard to witness for sure.
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  #16  
Old Tue Apr 2, 2013, 07:34 PM
Neil Cuadra Neil Cuadra is offline
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imvalfan,

Thank you for posting again. I'm sure it was hard to write this message to us.

I'm very sorry that your mother has died and that it was traumatic for you. I'm glad that your daughter was there with you. Your mother had strong opinions about her care and the end of her life and you deserve full credit for respecting her wishes, especially the last month after stopping her transfusions.

Even though it had to end, your mother was in every way a survivor of MDS. Your mother and father are at peace and I hope you will find peace too.
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  #17  
Old Thu Apr 4, 2013, 05:50 PM
Nancyann Nancyann is offline
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My thoughts and prayers are with you and your family. You respected your mother's wishes and sometimes that is so difficult to do. May God Bless you and bring you peace.

Nancy
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  #18  
Old Sun Apr 7, 2013, 07:37 PM
Cheryl C Cheryl C is offline
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God bless and comfort you too, Imvalfan - thank you for sharing with us. You have the satisfaction of knowing that you carried out your mum's wishes. She is resting peacefully now.
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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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  #19  
Old Sat May 11, 2013, 09:32 PM
katie katie is offline
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stop transfusions or not

My mom's doctor suggested we stop transfusions. She has therapy related mds and is 79. Her transfusions are not helping anymore. Her wbc lS 85,000 and she now has blasts of 4% . He is going to talk to my mom about it this week. I do not know how to advise her. Just wondering if this is kinder or should we let her pass continuing them?
Thank you for help and support.
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  #20  
Old Sun May 12, 2013, 03:53 PM
bebop bebop is offline
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I think it is a very hard decision. When the dr suggested or told my dad it was time to quit of course it was very upsetting but in my heart I knew it was his decision to go with the dr on it. He said let the people donating their blood and platelets help someone that it could help. very noble but heart wrenching. My thoughts are with you during this rough time.
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  #21  
Old Sun May 12, 2013, 08:33 PM
katie katie is offline
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Hi bebop.

Thank you for your support. The doctor is going to talk to her Thursday. I am praying thshe will make the decision that is right for her. How long did your dad live after that? Was his death painful? What did he die from?

Thanks so much.

Katieat
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