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edward_gardner2026-04-18

I've been taking Lytgobi 12 mg daily for my cholangiocarcinoma with the FGFR2 fusion. It's been a journey, and I want to share my experience. I've had some side effects, mostly minor, but I've also had a few urgent ones. I've had to deal with some electrolyte issues and a UTI, but the hardest part was the severe eye problems. I had retinal detachment symptoms, and it was sheer terror. I had floaters, flashing lights, and a curtain-like shadow across my eye. I ended up in the ER, and thankfully, I was able to recover after some treatment. I've also experienced the high phosphate levels side effects. It was absolutely awful — painful skin growths and muscle cramps. I want to know if anyone else has experienced these issues? I've also had questions about reporting side effects and need information on that. The best advice I can offer is to trust your instincts and seek medical help as soon as you notice anything alarming. My oncologist was fantastic, and I'd recommend reaching out to them immediately if you're experiencing anything concerning. Be proactive about your health, especially if you're on this medication. And yes, I do miss my doctor since mine was on vacation. I had to wait for my appointment to deal with the side effects. And yes, I go to the ER if I encounter sudden changes in my vision after talking to my doctor. My advice is to stay vigilant and ask your doctor about the side effects you might experience.

1 min read
last active 4/18/2026
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Comments (6)

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billy_cook4/17/2026

It's so important to report side effects to your doctor. I've had some upset stomach and vomiting, but I've learned to manage it with smaller, more frequent meals. I'm glad you're doing better now. I haven't experienced anything severe yet, and I'm crossing my fingers it stays that way. I've been on Lytgobi for a couple of months now, and I've had some mild side effects. I've had some dry mouth and skin irritation, but nothing too bad. I've also had some constipation, but that's manageable. I've been taking Lytgobi for about six months and have had some stomach issues, but nothing life-threatening. Follow the advice of your doctor, and don't trust the random advice that you get on the internet. Also one more thing, I would like to take your advice about being proactive. I'm constantly in touch with my doctor about my health. And I'm glad I did he has been able to manage the side effects well.

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justin_robertson4/17/2026

Drugs are scary, but it's the only way to keep cancer at bay.

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steven_lewis4/17/2026

Be proactive about your health, and you'll be okay.

T
teresa_henry4/17/2026

I've been on Lytgobi for a few weeks now, and I've had some dry mouth and skin irritation. Nothing too bad, but it's definitely noticeable. I've also had some constipation, but that's manageable. I'm glad you brought up the eye problems. I've had some mild eye irritation, but I've been too scared to mention it to my doctor. I'll definitely bring it up at my next appointment. I'm curious if anyone has experienced any hair loss. I've heard it can be a side effect, but I haven't noticed anything yet. Mostly I just have a dry mouth, a bit of hair loss and my skin is dry. But then again, I'm doing better than my friend who also has cholangiocarcinoma who just started radiation therapy and is struggling with it.

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christian_cox4/17/2026

I've been on Lytgobi for a few weeks now, and I've had some dry mouth and skin irritation. Nothing too bad, but it's definitely noticeable. I've also had some constipation, but that's manageable. I'm curious if anyone has experienced any hair loss. I've heard it can be a side effect, but I haven't noticed anything yet. I am also experiencing electrolyte issues. I'm just going to the ER and getting it managed. And yes, I've noticed a vision problem. I've been to the ER thrice due to the vision problems, and I'm constantly seeing my optometrist to get my eyes checked. However, I'm managing to stay proactive and get the treatment necessary for the side effects.

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hannah_alvarez4/17/2026

Remember, you're not alone in this. There are plenty of people out there who are going through the same thing. You can find support groups and online communities that can provide emotional and practical support. It's crucial to stay vigilant and report any side effects to your doctor immediately. I've had some electrolyte issues and a UTI, but I've had to deal with some electrolyte issues and a UTI, but the hardest part was the severe eye problems. I had retinal detachment symptoms, and it was sheer terror. I ended up in the ER, and thankfully, I was able to recover after some treatment. I've also experienced the high phosphate levels side effects. It was absolutely awful — painful skin growths and muscle cramps. I'm glad you're doing better now. I've had some electrolyte issues and a UTI, but I've had to deal with some electrolyte issues and a UTI, but the hardest part was the severe eye problems. But my vision is a bit different now. I can see some changes in my vision. I am going to the optometrist to get it checked.