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MDS Myelodysplastic syndromes

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Old Sat Dec 8, 2018, 05:07 PM
meagansmom meagansmom is offline
Join Date: Dec 2018
Location: Georgia, USA
Posts: 3
Mm mom is newly diagnosed

Mom went in for surgery the Thursday before Thanksgiving and they found a hemoglobin of 5.4. Surgery was cancelled and she was admitted. Received 3 units of blood and a BMB. The follow up to the doctor he said she had high risk MDS but all of the results werenít back yet. Set to start chemo the next week and then more of the results were back and the news was even worse. He said it was increased to very high risk MDS. He said life expectancy is 9 months but he was shooting for 18 months with chemo. I am a nurse and I knew cancer was a possibility but they only told us they expected it to be her rheumatoid arthritis attacking her cells or one of her rheumatoid arthritis med causing the issue.

Did he mean her life expectancy is 9 months and he was just hoping for more time? She took it as 9 months without chemo, 18 months with it? I am not sure that is what he meant???? (Should I ask him?) I donít really know what to expect.

Her hemoglobin has already dropped to 7.0 and had to have 2 units this past week.

How often do most have to have transfusions?

Does the Vidaza usually take while to begin to help and decrease the need for transfusions? How long does that take?

Caregivers how do you manage to keep a job, take them to chemo,take them once a week for labs, transfusions, plus all of the other things required, get them groceries, clean etc?

My mother is blind and I am her primary caregiver even before this happened. I am worn out. The plan is for me to move in with her and my daughter move into my house. I am overwhelmed. The packing and moving and rearranging 3 houses down to 2 a lot to figure out and choreograph!

Thanks any information or advice is appreciated.
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Old Sun Dec 9, 2018, 12:18 AM
rar rar is offline
Join Date: Mar 2014
Location: colorado
Posts: 208
I was diagnosed with very high risk MDS RAEB2 4 years and a half years ago with 5 months to live. I had a transplant and was cured. Every individual is different and statistics only apply to the average of the group. I wish you well.

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Old Mon Dec 10, 2018, 08:49 AM
meagansmom meagansmom is offline
Join Date: Dec 2018
Location: Georgia, USA
Posts: 3
She is not a candidate for transplant. Her health is not good otherwise.
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Old Mon Dec 10, 2018, 02:24 PM
Sally C Sally C is offline
Join Date: Dec 2010
Location: Chesterfield, Va.
Posts: 426
Hi Meagansmom,
I wish I could answer all of your questions but I don't have the answers.
With regard to whether or not you should ask your mom's doctor something, yes yes yes - you should ask whatever questions you may have. When my husband was diagnosed with MDS in 2009 I took a recording device so I could refer back to what the doctors said since it was all Greek to me.
As a caretaker, I totally understand your exhaustion, frustration and feelings of futility. I remember we were about a year and a half into his illness before someone asked how I was doing. It made me cry as I felt so alone with all the burdens on me and it meant so much that someone acknowledged that it was hard on both of us. Having been both the caretaker and the patient I really believe it's harder on the caretaker. Take good care of yourself and realize that you aren't invincible. Ask for help if there are others who can help. Cut yourself some slack whenever you can - you can only do so much. Acknowledge your limitations and live within them. And just take one day at a time. You will get through it although I know sometimes it doesn't seem that way.
All the best to you and your family
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Old Tue Dec 11, 2018, 10:23 AM
meagansmom meagansmom is offline
Join Date: Dec 2018
Location: Georgia, USA
Posts: 3
Thank you for responding Sally.
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