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william_owens2026-04-18

I've been on Blincyto for a few weeks now as part of my treatment for leukemia, and I'm finding it quite challenging. The continuous infusion is tough to deal with, and I'm really struggling with the side effects. The nausea and headache have been quite intense, but the scariest part is the risk of these potentially life-threatening side effects. I've been experiencing some mood swings and extreme fatigue, which I know can be serious. I'm worried about tumor lysis syndrome and pancreatitis, especially since I've had some muscle cramps and nausea. I'm curious if anyone else has had similar experiences or has tips for managing these. The nursing staff and pharmacist have been helpful, but I feel like I'm in over my head.

1 min read
last active 3d ago
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Comments (7)

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lauren_meyer4d ago

My dad just finished Blincyto treatment so maybe I can help. Blincyto is no joke, but it worked for him. Should be really attentive to the side effects, especially infection and allergies. Take a lot of notes and keep the doctor in the loop on any minor changes or symptoms. I can't stress how important it is to report anything to your docs right away. Even when you think it's minor. Did you try any medicines to help with the nausea? Did you also have any of the more serious side effects? How are you keeping up with it?

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william_bailey4d ago

I had to stop my Infusion early because I broke out in HUGE hives all over my body. ITCHY AS HECK!. Couldn't couldnt sleep all night scratching and scratching. I had to get Benadryl, and it was so rough. I got off the medication right away, and I wish you the best. Try to track your symptoms with a journal or something, to keep everything straight. I'm sorry you're going through this.

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virginia_hughes4d ago

You're braver than I am. I would have a really hard time with the continuous infusion. I would also be a little freaked out by the risk of life-threatening side effects.

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christine_powell4d ago

Drugs like Blincyto are game-changers, but they do come with a host of side effects. Make sure you're working closely with your healthcare team. They should be monitoring you for the sepsis. They should also be able to assess your risk for TLS using a variety of criteria and then adjust your hydration, alkanization, and medications accordingly. Have you tried anything that helps with the fatigue, like diet changes or exercise? I have a friend who had to take a couple weeks off from work to get her energy back and adjust to the meds.

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nancy_santos4d ago

I'm thinking about starting Blincyto, but this thread is a little scary. I was hoping for something more positive. But it does sound pretty serious. It's good to hear though that these side effects are dramatic but they are rare and the medication is effective. This is an immunotherapy. That means it is not going to be as easy as a chemo. And it means you can do it at home. Good luck, and I hope you feel better soon.

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martha_lane4d ago

This medication is intense. I had to stop using it because of severe headaches. It was like someone was hitting me from inside my skull. They are working on boosting the immune system, and that is good, but it is also a lot for some bodies to handle. Remember to stay hydrated and keep your doctor in the loop with any changes. It's important to take good care of yourself, and if you need a break from the treatment, take it. If you can, take several breaks to help your body recover. Your doctor is your partner and your advocate.

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justin_robertson4d ago

Wow I'm so sorry you're going through this. Remember that the side effects are a sign that the medication is working against the cancer cells. But if they become unbearable, talk to your oncologist. They can adjust your treatment or prescribe medication to manage the side effects.