Anyone have experience with lenvatinib (Lenvima)?

I had a horrible time with Levatinib. My blood pressure went sky high to the point I was on 4 blood pressure meds. Aches and pains all over. Loss of hair in small bunches all over my head. When I stopped it, it took a long time for my pressure to go down again. I also got an inflammation in my small intestine that was incredibly painful. The pain went away after stopping drug, but not sure about inflammation. Still acts up occasionally. They started me aggressively at 80mg and dropped me to 60, then 40mg. Hope you have better luck. Personally, I'll never take it again.

thank you for responding. Not what Iwanted to hear but i would rather know the truth then not. Iwish you well.

Hopefully, it will be different for you. But if you start having the symptoms, definitely talk to your doctor about a lower dose asap..🙏

I surely will. Hes starting me on 10 mg. I started taking Cabometyx a few months ago and thats not working so he switched me to Lenvatinib. Thanks for your insite.

@deemar, in addition to @2ndjourney, I'm tagging fellow members like @nang and @ronspon59, who have experience with Lenvima (lenvatinib) for treating kidney cancer.

Deemar, will you be getting lenvatinib alone or with immunotherapy like Keytruda (pembrolizumab)? Have you made the switch yet? How are you doing?

I personally had both at the same time, then lenvatinib by itself for a time. @deemar , I hope you are doing well on it.❤

I haven't gotten it yet, trying to get it through insurance but they don't want to pay. So looking into a grant. I believe I will be taking it alone. How are you doing? Do you take it? thanks for checking in.

My husband was diagnosed with Stage 4 Kidney Cancer in August of 2021. It had spread from his kidney to his lungs. He had his kidney removed and started taking Lenvima and Keytruda in August 2021 until May of 2022. He had ALL sorts of side effects, just about EVERYTHING that is on the list of side effects for those two drugs. He had to stop in May 2022 because the medication finally took a toll on his thyroid, and that will do a number on your health. But the bottom line.... Lenvima and Keytruda did the trick. I believe 5 or 10 years ago that diagnose would have been a death sentence but he is in remission now, thanks to those two drugs. I believe his oncologist was even surprised (I think this is a relatively new treatment for some cancers) So yes, these are very potent drugs, just like chemo and radiation, that can cause terrible side effects but keep your thoughts on the outcome! To beat what it is that you are fighting! Try to hang in there, be strong and fight a good fight, one step at a time! And yes do report any side effects with your doctor, he/she is looking after your best interest. Sending you hugs and positive thoughts to get through this!

I thank you for the information. I also think its wonderful that you are so helpful to your husband. Sending hugs and good things to you too!