Thyroid cancer metastasised to lungs, any experiences with Lenvatinib?

Hi Gelli, sorry to read your update regarding metastasis in lungs. It might be worth doing a wider search across the other forums too for Lenvatinib and see if anything helpful comes up.

I think if it were me then yes I might well pursue a referral to a centre of excellence like the Marsden. Even if it was just to give peace of mind that you were doing all you could, especially as your case isn't straightforward.

I'll tag Tomo  if he doesn't mind as I believe when he last posted he mentioned lung mets, although I don't think he's overly active on the forum. Might be worth having a look at his profile and posts to see if anything would help. You could perhaps message him directly then too.

Hopefully you'll get some more replies soon with more relevant advice.

Let us know how you get on. All the best. X

Hi, 

Levatnib is widely used for other types of cancer, so please don't read too much into what you find about it on other cancer forum groups. The doses and protocols might be quite different.

I have known people who've had this treatment and it's quite tough and not done very much. For that reason, I would encourage you to follow your instinct to ask for a referral to a major cancer hospital like the Marsden. My friend was treated there after she came to the conclusion that her local hospital in Sussex wasn't experienced enough in dealing with more complex thyroid cancers. 

She was under a doctor called Kate Newbold and she absolutely adored her.  I would also suggest - if you didn't already - to talk to Kate Farnell at Butterfly Thyroid Trust. She knows all the top oncologists and will be able to help with more advice about Levatnib.

Barbara - this is enormously helpful - thank you so much!!

I too have been struggling with the team at my local hospital and felt I'm not getting the expert management I would ideally like.....

I've emailed Butterfly and will pick up the thread with them....

Thank you again :-)

Geraldine

Hi, I have been on Lenvatinib for 7 months now and am finding it really difficult. I had my dosage reduced because of seizures and high bp. Now I have bowel problems, weakness, dizziness and loss of appetite to name a few. There is a lovely facebook group for people on Lenvatinib. I hope your side effects aren't as bad x

I'm so sorry to hear that Barbara - I hope the situation improves for you. I must say I'm pretty apprehensive about taking it.....

What was the name of the FB group?  I found a few but none that seemed to be for lung mets?

Best wishes

Gelli :-)

Hi, The group is RAI resistant Thyroid Cancer. See you on there x