Anyone taking Lenvima (lenvatinib)?

Posted by tonbra32 @tonbra32, Apr 23, 2024

Is anyone taking Lenvatinib? How is it? How is it financially?

Interested in more discussions like this? Go to the Thyroid Cancer Support Group.

As posted previously, I’m one week out from completing 1 year on Lenvima. I wrote this in the spirit of sharing so others may better understand the approach in my case addressing papillary thyroid carcinoma (tall cell) as a 71 yoa male. As documented in the literature and as per my oncologist, patients that are prescribed Lenvima as treatment plan may experience a range of side effects. However it’s important to understand that each patient is different as to their ability to tolerate Lenvima and the variability of side effects encountered. In other words each patients journey will likely be different but hopefully all with positive outcomes. So my year with Lenvima was indeed a challenging journey, I lost 60 lbs, I had days when I was quite ill, difficult to get out of bed, and days that were almost normal, no pain or aches. What follows is the list of side effects while on 24mg, 20mg and 14mg Lenvima.
Dry mouth (continuous)
No appetite, nausea, acidic stomach, difficulty eating solid foods, unable to taste food, frequent diarrhea, Hands & feet sensitivity, veins in hands protrude excessively, hands easily bruised and bleed. Excessive fatigue, feel generally weak, easily exhausted when doing physical tasks. Frequent voice hoarseness.
As a result of the cancer I have permanent damage to my laryngeal nerve damage (voice is somewhat raspy). However with all of this I have made significant progress in terms of tumors have shrunk steadily during the 12 month course. This progress has been well documented with PET scan every 3 months. I’m currently on 10mg Lenvima but will be adjusted to 14mg starting first week August 2026. The increase is essentially to help boost and or support my continued progress for further tumor reduction. It hasn’t been an easy year but I certainly felt like the drugs negative impact on my quality of life was balanced by my overall positive progress in halting tumor growth and significant reduction.
Dennis S

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Profile picture for Colleen Young, Connect Director @colleenyoung

@sha75, welcome. I'm tagging fellow members who have experience with Lenvima (lenvatinib) and cn share with you.

She, how is your husband doing on Lenvima? Did taking Zofran before help? How are YOU doing?

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@colleenyoung
I’ve been on Lenvima since 8/2025, started with 24mg then reduced over time to 20mg, 14mg, currently at 10mg. My diagnosis is papillary tall cell thyroid carcinoma.

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Profile picture for Colleen Young, Connect Director @colleenyoung

@sha75, welcome. I'm tagging fellow members who have experience with Lenvima (lenvatinib) and cn share with you.

She, how is your husband doing on Lenvima? Did taking Zofran before help? How are YOU doing?

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@colleenyoung I believe he’s been fortunate to be able to tolerate this drug. He continues to take the zofran as recommended for at least the 1st month. It’s certainly a journey. We’re not always sure what tomorrow may bring. I remain interested in hearing from others who have been treated with Lenvima.

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Profile picture for sha75 @sha75

My husband will begin Lenvima tomorrow. We’re worried about the long list of side effects. It was recommended to take zofran 30-60 mins before Lenvima & at bedtime. Please share any helpful info to help him thru this treatment.

Jump to this post

@sha75, welcome. I'm tagging fellow members who have experience with Lenvima (lenvatinib) and cn share with you.

She, how is your husband doing on Lenvima? Did taking Zofran before help? How are YOU doing?

REPLY

My husband will begin Lenvima tomorrow. We’re worried about the long list of side effects. It was recommended to take zofran 30-60 mins before Lenvima & at bedtime. Please share any helpful info to help him thru this treatment.

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Profile picture for meghansa65 @meghansa65

My thyroid cancer spread to my lungs, too. I have 40 nodules. I am very scared to start with Lenvatinib, too.

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@meghansa65
lilyann here, how are you meghan?
had both you and eumanuell on my mind. wishing you both a merry christmas and a happy new year. god bless you both.

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Profile picture for lilyann @lilyann

@meghansa65
hi, lilyann here, i don't know, i haven't heard anything, but i will look on the search engine and see. but, if you already heard about it doing that in another group than they would know. please keep us informed. i do wish you well.

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@lilyann please keep us posted, and thank you.

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Profile picture for meghansa65 @meghansa65

Hei, is there any one in this group that take a covid vaccine? I just did and i am scared because i read in another group that the vaccine will make thyroid cancers grow and doubled fast. Any comments?

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@meghansa65
hi, lilyann here, i don't know, i haven't heard anything, but i will look on the search engine and see. but, if you already heard about it doing that in another group than they would know. please keep us informed. i do wish you well.

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Hei, is there any one in this group that take a covid vaccine? I just did and i am scared because i read in another group that the vaccine will make thyroid cancers grow and doubled fast. Any comments?

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Profile picture for meghansa65 @meghansa65

@lilyann how aare you? did you start with lenvima?

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@meghansa65
hi megan, lilyann here.

i'm off lenvima and they put me on cabometyx and now i am off that. just had a pet scan yesterday. i can feel the lymph nodes in my neck getting larger. i didn't get any more teeth pulled as i was suppose to get the radiation too. i don't feel up to it. they were rushing me and i was going to go along with it but the dental surgeon said it will take at least 5 weeks to heal where the teeth were pulled (3). they wanted me to only wait a week and he said that's not possible. to start the radiation. so that is where i am as of now. but, i did have an MRI the beginning of october of the brain and all is clear. so that is good news because the way my head hurts all the time they wanted to check it out. i guess its what you call referred pain. i still have the right ear pain also. so thank you for checking in on me and i am wishing you the best. keep in touch. god bless

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