[Rita Altman]

Brenda,
My husband last treatment was July 17. He has only had one precept shot and I have not noticed any changes In his health since stopping. We will be going back in two weeks and will check his levels and get another shot. I will keep you posted. Please feel free to message me. Good luck. Rita Altman.

[Rita Altman]

After 8 cycles we stopped Videza last month. Numbers stayed steady for the eight months but no improvement. Not sure what is going to happen now. Was hoping the mouth sores and skin infections were caused by the drop in platelets during Videza
(low was 14). Mouth sores have continued. Really bad today. Platelets were are 24 when we stopped. Will keep you posted as time goes on if you would like me too.

[Rita Altman]

I have the same situation as you do. My husband had MDS and dementia. He cannot be without me. At our cancer center they have been coming outside to us. They will not let me come in. It has been wonderful. So thankful for all the nurses who bend over backwards for each situation. He jus finished his sixth cycle of Videza. There have been no improvement but he is holding steady. Platelets run between 15-30. All other blood counts are low but have not needed any transfusions yet. Thankful for each day.

[Rita Altman]

This is the first time I have written but looking for opinions
My husband is 82 and also has dementia He was diagnosed with high risk MDS in October. We have done 5 rounds of Videza. Yesterday his numbers were at all time lows. The dr said transfusion dependency can greatly affect quality of life. Because of his dementia he does not understand that he is ill. I don’t know what to do. He does not sit still very well so the thought of transfusions that can take all day could be a nightmare. I am considering doing nothing when we stop the Videza. It is so hard to make life and death decisions for someone. Is this better for him or for me? Transplant is not an option for him. I will really appreciate any input and support

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