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Real members of MyLeukemiaTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Hi Has Anyone Been Put On Blincyto My Daughter Started It Yesterday

A MyLeukemiaTeam Member asked a question 💭
Princeton, MN

Chemo stopped working numbers aren’t where the doctors want them to be so transplant is on hold

June 28, 2020
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A MyLeukemiaTeam Member

That’s great! The first round I went through I could barely walk and lost 40 lbs. food all tasted like metal. At a low dose I was fine. When they got to the higher dose I think was in the 900 range was when I was having problems. With all my set backs I had to stay at Moffitt for my whole treatment. Glad she is doing good and is at home for the treatments. So much easier at home.
Moffitt knows all about Blincyto. Everything was explained and what could happen and all the side effects. The even gave me a turn around time. The were accurate.
Chemo sucks and hope she gets through this quickly and takes the shortest amount of chemo needed. My body reacted quickly to the treatment and only did two 30 day rounds.

July 12, 2020
A MyLeukemiaTeam Member

My daughter has been on it for 2 weeks no problems so far 😊
Has been out of hospital for a week has a pump home health RN comes every other day to check on her & change the medicine bags. The only sad part not many of the health professionals know much about this medicine I am so sorry you had such a difficult experience with it So happy tI hear about your remission 😊
🙏 for my daughter to experience that soon

July 10, 2020
A MyLeukemiaTeam Member

I was on it. Was in the hospital for 60 days while on it. It was brutal when they raised the dosage. Luckily my nurse caught the symptoms of toxicity. I could not answer simple questions. The med messes with your brain function. Sometimes I did not know what reality was and was confused. I was put on Adivan and my world came back. Took almost a year to get back to normal without using the med. Don’t get me wrong, it was much easier than the Hyper-CVAD chemo. Just ask her questions and tell her to say something if you don’t feel right. They can make a dosage adjustment. I’ve been in remission for 18 months now.

July 10, 2020

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