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wynicurn Mon Jun 29, 2015 10:16 PM

A little lost
Hello Everyone,

I am new to this forum and I have read through some of the previous posts. Reading the other posts makes me feel like I know I am not alone and as a care giver sometimes it's hard not to feel that way.

My dad is 71 and was diagnosed with MDS over two years ago. Recently it's become leukemia. He's was getting AZA shots but his body stopped responding and now the dr has started Dacogen treatments. His first treatment was last week. Shortly days after his treatment he came home but then started to have chest pain and had to be admitted it was like he was having a heart attack. But his hemoglobin level was 5 and the drs think it's because he wasn't having enough blood being pumped to his heart. My dad is starting to lose hope and so am I. I am trying to stay positive for him. Given his age and his other cormorbidities the drs don't think a transplant would be beneficial for him because it may worsen his condition. He's been needing more transfusions basically everyday red blood and platelets.

I don't know else to do. I am just trying to spend as much time with him as possible but I have a mortgage, bills and kids. The drs think worse case scenario he's got 2-3 months left best case 1-2 years. Does anyone have any advice for me? Feeling a little lost right now?

Patt Sat Jul 4, 2015 08:56 AM

I am so sorry for you, your dad, and family. Your dad is blessed to have you as a daughter; what a legacy-of-love. God Bless.

rar Sat Jul 4, 2015 12:34 PM

I am the care receiver. Sometimes I think MDS is harder on the care giver than the receiver. Do you have someone who could give you a brief time off to recharge?

Age alone should not prevent a transplant. I was a couple years older when I got mine. Other cormorbidities could prevent a transplant. Are any of them bad?

I wish you success in your trying times.


wynicurn Tue Jul 28, 2015 03:24 AM

Thank you
Thanks Patty and Ray.

He is a diabetic, had triple bypass a few years back, high blood pressure. He was Vidaza for 2 years and it stopped working. Earlier this year in January he started needing more frequent transfusions. He started Decogen treatment a month ago and he came home and a few days later his hemoglobin dropped to 5 and platelets to 11,000. and started to have chest pain. i took him to the ER and hes been in the hospital since. I just had him transfered to another hospital where they offer clinical trials and he sees a MDS specialist. He hasnt been able to recover since his first round of the Decogen. He needs blood product trasnfusions almost everyday. Recently the doctors put in for a consult for the Pallitive care team to speak to us. I am really hoping he catches a break even if it's for a little while. so he can go home and spend time with us and his grandkids.


wynicurn Sat Oct 10, 2015 05:50 AM

Bone marrow shut down
so as an update my father's bone marrow is not responding it has completely shut down. He is going to pallitative care but still wants transfusions. Even with the transfusions they say he has 1-2 months. I'm not even sure if he should continue them any advise anyone?

Cheryl C Sat Oct 10, 2015 07:10 PM

Hello Wynicurn - having recently lost my beloved father in law who was like a father to me, my heart goes out to you. In today's terms, your dad isn't even elderly yet. If he is able to make his own decisions without having to feel any guilt if he eventually decides not to cease transfusions, that's really good. Difficult and traumatic as it is for family, treatment for people who are terminal needs to be what will keep them happy and comfortable in their last days, rather than what keeps us as a family comfortable. God bless as you support him.

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