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Mental state

This topic has 4 replies, 3 voices, and was last updated 4 years, 8 months ago by Mary.

Viewing 5 posts - 1 through 5 (of 5 total)

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August 23, 2019 at 11:00 pm #48735

Mary
Participant

Husband receiving Vidaza and Rivlimid treatments, lately he seems a little confused about what is going on around him. Is this normal or do these drugs cause early dementia? He is 67 soon to be 68.

August 24, 2019 at 6:51 am #48736

Kathy Stermer
Participant

Have not heard of both drugs being used at the same time before. Are you at a Center of Excellence for treatment? Hopefully being followed carefully by care team and they are aware of what’s going on.

August 24, 2019 at 11:14 am #48737
Mary
Participant
Currently not at Center of Excellence as the only one is 2 hours away. He does 5 days Vidaza shots and 21 days Rivlimid. He had a 7% blast his last BMB reason for Rivlimid. I trust his care team but if this does not work well may make the trip to CE. He was currently in hospital with pneumonia and blood infection.
- This reply was modified 4 years, 8 months ago by Mary.
August 28, 2019 at 5:11 pm #48761

JAMES KAMP
Participant

I just finished another 5 day treatment of Vidaza. I think it was the 13th cycle. During days 3 – 7, I am amazed at some of the decisions I make. I do things I would never do at other times. I have been able to keep my desk job, but try not to do anything important on days 4 and 5. By day 7 things are returning to normal. My wife was frustrated with me at first. Now, we are learning the pattern. When she questions my planned actions, I know just to trust her. I fought it at first. Now I know it is part of the treatment.

I would add that my brain did not work correctly when my hemoglobin was low, either.

August 29, 2019 at 4:45 pm #48772

Mary
Participant

Thanks for your reply it helps to know this is common. My husband has been on Vidaza since August of last year. His last BMB showed 7% blast so started him on Rivlimid. 5 days Vidaza and 21 Rivlimid (pill he takes once a day) not sure of side effects yet just started Monday but seems to be tolerating well. Was supposed to begin last month but ended up in hospital for a week and a half with pnemonia and blood infection. He also broke hip 5 years ago now arthritis setting in getting physical therapy twice a week thank goodness Medicare takes care of that. Good luck to you, day by day is all we can do.
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