Lenvima

FormerMember over 3 years ago

2 replies
19 subscribers
837 views

My name is Una. I am 55 years old and I live in Dublin. I have thyroid cancer since 2017. I have written to every possible cancer website I can find, to locate other users of Lenvima. I am one of the chosen ones where my thyroid cancer spread to my lungs and I have 2 nodules which are monitored monthly in hospital. I also get an MRI every 3 months. The position of my nodules means they cannot be surgically removed, as they are too close to my main arteries. It took 3 biopsies to actually get enough tissue to diagnose that it was still Thyroid cancer and not Lung cancer I have. After saying all that, I am a firm believer that I am certainly not the only person who has Thyroid cancer in my lung, and certainly not the only person who is taking Lenvima. While it is doing what it says on the tin, and suppressing the nodules for me, the side affects are not nice. I feel like I am eating razor blades after 3/4 days on Lenvima. My skin on my fingers becomes raw and unbearable to the touch, and my feet are so sore, I hobble about for about a week. I have learnt to live with this but I seriously believe that there is a fix out there.

Start a Discussion in Tell us what you think - I think this could become a forum for patients to talk to each other and help each other where possible.

If anyone is on Lenvima, i would really like to discuss the side affects.

barbaral over 3 years ago

A few years ago we did have a few members using Levatnib but I'm not sure if we still do. (I think Lenvima is the trade name for Levatnib). A large number of us who met here years back are still in touch so I'll post elsewhere to let them know you are looking for fellow users. I haven't had it myself but know several people who have.

I believe it's very good but the side effects can be hard to handle and it's essential you tell your medical team about anything that doesn't feel 'normal' so they can adjust your dosage. The sensitive hands and feet are the main symptoms I've heard about along with blood pressure going way too high. My friend who took it for about six months had to be taken off whenever the side-effects got too hard to handle.

I'd also suggest to check out the Butterfly Thyroid Trust - google them, they're in Newcastle - as the lady who runs that is a great advocate for patients with more complex cases. I'm sure it won't matter to her that you're not in the UK.

Best wishes

Barbara

“Scars are tattoos with better stories.” – Anonymous

FormerMember over 3 years ago

Hi Una, I have multiple mets to both lungs and have been on Lenvima for nearly two years.

for the sore throat I was prescribed Difflam, I had to gargle with it prior to eating to numb my mouth/throat or I couldn’t eat anything.

for the hand and feet sores use cetraban 2/3 times a day to keep them soft.

if the side effects are too bad then please don’t just suffer in silence. Contact your specialist nurse or oncologist. The side effects are relentless and you may need to take a break or have the fuse refused, I managed full dose of 24mg for nearly 10 month but then I lost too much weight with being unable to eat. So was reduced to 20, this was fine for a few month but then started having issues with joint pain, nausea and sickness.

im now on 14 mg and touch wood seem to be tolerating it better. I’m currently waiting for a date for my next scan to see if it’s still keeping it at bay.

it’s strange but each time I’ve had to take a break the side effects are different when I go back on them, the only constant side effect I have is high BP.

please don’t suffer contact you team. X

More from this forum

Lenvima