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Anyone have experience with lenvatinib (Lenvima)?

Posted by deemar @deemar, Dec 4, 2024

I have just been prescribed Lenvatinib, does anyone have experience with this drug? Side effects, helpfulness etc? Thank you.

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2ndjourney | @2ndjourney | Sep 15, 2025
In reply to @mmn126 "I’ve been on Lenvima for 7 months, first at 24 mg for two months, now at..." + (show)
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I’ve been on Lenvima for 7 months, first at 24 mg for two months, now at 12. My thyroid cancer, after 3 surgeries and RAI metastasized to my lung. The 24 mg nearly killed me: BP was out of control, no appetite, joint pain, fatigue, etc. A different oncologist took me off of it after I ended up in the hospital for 3 days. 12 mg is tolerable and I had a clean PET scan in mid-May, no growth, no new nodules. Does anyone survive this metastasis? Or is it a death sentence.

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I also had other terrible side effects with lenvima, along with hypothyroidism: the very high blood pressure, joint pain (that I still have 2yrs later, fatigue. I will never take that again. I'd rather Any other treatment.
I had kidney cancer first, that metastisized to a cyst in my maxillary bone, which was thankfully removed. Now, I'm praying that a cyst on my remaining kidney is not cancer. This kidney cancer spreads like wildfire it seems. But we WILL ALL beat it!!!! God Bless to you!

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2ndjourney | @2ndjourney | Sep 15, 2025
In reply to @deemar "I started on 40mg, and I was so sick. They lowered it to 20mg. But after..." + (show)
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I started on 40mg, and I was so sick. They lowered it to 20mg. But after my scan the kidney cancer was still spreading. So now they switched me to Lenvima which I just started. Prayers for you!

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I was on Keytruda before Levatinib...after the horrible side effects (read other replies), I wish I never took it. I went to Memorial Sloane in NYC and wish I started there. They would have done radiation first, but had to do surgery because my cancer advanced so much. Prayers to you!

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