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Posts: 157
Joined: Jul 2011

Hi everyone, does anyone have experience with Lenvima? I am interested in learning more about the side effects and how soon you might have started to see results on this med?

This is for idione refractory metastatic thyroid cancer ... w lesions on the brain.

Thank you.



alapah's picture
Posts: 287
Joined: Oct 2009

I was on Lenvima/Lenvatinib for several months (I think it was 7) from fall 2015 into spring 2016. It did great things in terms of shrinking tumors in my lungs but I had to stop taking it after experiencing hemoptysis (I don't think that is a common problem or due to the Lenvima itself -  but I have had hemotysis before so I was vulnerable to it). I recall being really fatigued at times while on Lenvima. I did have a few squamous cell skin cancer spots shaved off while on that particular drug - many kinase inhibitor drugs can cause squamous cell skin cancers so it's imporant to get skin checks at the dermatologist every three months or whenever something odd appears. They are easily treated.

The biggest issue for most is that it has a propensity to cause high blood pressure - I actually received a BP cuff along with the first presription. I normally have very good BP readings but mine did increase (and it can happen immediately and dramatically) so I was put on a once a day dose of amlodipine. Make sure you discuss this with your doctor and take readings to track what's happening. It's controllable but you need to be aware of it.

I wish I could have stayed on it - had to move on to another chemo. Lenvima can do some great things. I very much hope this is the case for you.


Posts: 157
Joined: Jul 2011

Thank you Eileen for sharing your personal experience - your feedback is very helpful. Hope things are going better for you on your new med.

Posts: 1
Joined: Sep 2017

I've been on Lenvima since Nov. The side effects can be hard to deal with at times but my Dr. has lessened the dosage and that has helped. The med itself has brought my thyroglobulin tumor marker down and in the normal range. Woohoo! So, yes, it is working for me. Good luck to you.

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