Progression to AML

[Crystal Tolley]

My father 79 y/o was diagnosed with high risk MDS/MPN overlap one year ago. The oncologist gave him 6 months to one year. He progressed to AML two weeks ago. He is doing home hospice currently – hospice has agreed to allow one transfusion a week. That said, the transfusions are doing nothing. Last week his wbc 183,000 – hemoglobin 5.8. He just recently started mumbling instead of talking, not eating and has a terrible time sleeping. I just am in turmoil not knowing how much time he has left – what will the end be like.

Does anyone have any insight or experiences?

Much appreciated.

[Marie Yeager]

Hello Crystal,
My heart aches for you. It is never easy being with a loved one towards the end. I’ve been with several parents (mine and my husband’s) when they were at that point. Sometimes they’ll have several bad days and you think it’s the end … then all of a sudden they bounce back and have a few good days. Every one was different, but none of them had MDS. I also had a niece pass from leukemia and she became very similar to what you are describing toward the end – the most important thing to focus on is comfort. Don’t hesitate to use any and all measures that hospice has to offer. In those moments when he’s still aware and conscious, Share your favorite memories and stories – even if you aren’t sure if he can hear you. Your presence will bring him great comfort and peace. He clearly raised a loving and caring daughter. Thinking of you and your dad and sending good thoughts your way.
Marie

[Marie Yeager]

Hello Crystal,
My heart aches for you. It is never easy being with a loved one towards the end. I’ve been with several parents (mine and my husband’s) when they were at that point. Sometimes they’ll have several bad days and you think it’s the end … then all of a sudden they bounce back and have a few good days. Every one was different, but none of them had MDS. I also had a niece pass from leukemia and she became very similar to what you are describing toward the end – the most important thing to focus on is comfort. Don’t hesitate to use any and all measures that hospice has to offer. In those moments when he’s still aware and conscious, Share your favorite memories and stories – even if you aren’t sure if he can hear you. Your presence will bring him great comfort and peace. He clearly raised a loving and caring daughter. Thinking of you and your dad and sending good thoughts your way.
Marie

[Richard Wagner]

Dear Crystal,,
I am 81 year old Dad and I have had MDS for about 8 years. Since 2015. I have been lucky as was given 1-2 years to live.
I took Vidaza Chemo for 6 months. I was in hospital June 2022 with blood bacteria. 2 days from dying. Antibiotics
fixed me. I have been on HGB transfusions most of last 6 months. I have a hospice nurse on call when I need her.
My wife has drugs in refrigerator to give me when time comes.. My white cells are 1.5 and HGB at 7.2.
I expect not to make it very far into this 2023 year. I do not want any transfusions while in hospice. Just good
drugs.
God Bless

[Linda Solin]

Dear Crystal,
My sister was diagnosed with high risk MDS in August of 2018 and it converted to AML in December of 2020. Two weeks before the holidays she asked to stop any measures and go on hospice care. I stayed with her until she passed on Christmas day. Prior to the last 7 days she appeared confused and her speech did not always make sense. After that she stopped speaking, eating and refused liquid. Hospice has everything available to make your loved one comfortable and they will assure you regarding dosages as you work through it day by day. I didn’t hesitate to play soft music and talk softly to her – I think it helps. I’m so sorry for your pain, but know that being there is a great gift and that you are just doing the best you can. Bless you.
Linda

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