Molecular Therapy - Lenvatanib/Sorafenib

Hi Slugsie 

I've been here for nearly 13 years and have - in that team - seen a lot of people go through treatment with Levatnib and Sorafenib. Indeed, back when I started, those were only just coming into the TC arena as newly approved wonder drugs. They can work very well, but the side effects can be tough to handle for some people and it's important to ask what those effects might be, and to commit to reporting them promptly and fully so that they can tweek the treatment regimes.

I'm also not current with the protocols on what you can have or for how long. It used to be - if memory serves me - you started with one and potentially progressed to the other (Sorafenib first, I think) then the NICE rationed access so that you could only have one or the other but today, I'm just not sure. So add that to your list of questions.

They are, I believe, shockingly expensive.  You also might need to be with a really specialist cancer centre - my friend had treatment in the early days of these drugs via the Marsden who were fantastic. I wouldn't want to go through this with a less specialised team.

What do you mean about the drop-down lists? Which lists are you referring to?

Thanks again for your reply.  I’m told by my oncologist that I am lucky to live in UK who have authorised the use of these drugs as quite a lot of other countries haven’t coz if the cost, so aim not arguing!!!  I’ve been told if they start thinking along these lines they’ll need to send the tumour off for genetic analysis to decide which would be best.  I may ask for a referral to the Marsden as I know there’s a consultant who works with BTF quite a lot from there.  Going to see what they say in Autumn.  Hopefully it will all turn out to be academic!

Hi 

I started on Lenvatinib last week. I had RAI in December 2021 which was effective and they did it again in July 2022 and it didnt work. I was then on "watch and wait" and the hospital wanted to see how the cancer grew. 

In August they told me I would start on Lenvatinib and two days later my blood pressure went all over the place and I am now on medication to control the blood pressure. 

10 days into the treatment and I now have Diarrohea.

As its cumulative I know that the side effects can happen sometime down the road but if it works then this is the best treatment for Thyroid cancer if RAI doesnt work.  

I was also warned that I may have to go on Lenvatinib a while ago, and now I have to.  They have found mets on my brain which I have to have Stereotactic radiotherapy for which I will be having in the next 2 weeks, had my mask made yesterday.  Also spread to my oesophagus and spleen and my lung mets have increased again in size so Lenvatinib will be started 2 weeks after my radiotherapy.  I am quite anxious reading about all the side effects but there isn't an alternative so I have to get over it.  Just noticed your message was 5 months ago @Slugsie so I guess you could be on them by now, so could you tell me how you are on them.

Hi there

I haven’t been on here for ages as I didn’t find it very helpful. No one seemed to have heard of Lenvatinib. I have been on it since Aug 22 no am tolerating the side effects ok. I get very tired and achy, but as long as I rest up I can still enjoy life. It took a while to get the dose right for me. I take 10mg two days on and one day off(have to write it down!) I am very lucky to be under the head and neck team at Royal Marsden. They are amazing.

Your treatment sounds horrid, I hope you are doing ok. Sending very best wishes. Sue

Hi Sue

I am now on 14mg and the only side effect is the high blood pressure and they have given ne something for that which is not working as effectively as it should as my BP in the evenings is to high. I dont feel any side effects because of the high BP but I am taking my readings three times a day to monitor it. 

I am waiting to hear if I should continue with the Lenvatinib or take a break.

Since starting the treatment my sleeping has improved considerably.  

I am also under the head and neck team at RMH and agree that all the people who make up the team are fantastic. I am in the Monday clinic. 

I wish you well

Howard 

Thank you for your reply @SusanmaryD and it's good to hear that you are managing the side effects, I guess we don't know what we will be like until we start taking then,

I was very hesitant about starting taking Lenvatinib. The list of side effects is daunting. For me the side effects on the starting dose were horrible, but now I’m on a reduced dose they are much more manageable. 15 months since I started and they are very gradually getting a bit worse (more tired, more achy) but the tumour size is stable and I am very grateful for that! 

The I took a trip to NZ this time last year, the consultant put me on a reduced dose and apart from having to change the dressing on the flight (aggravated by the cabin pressure) it all worked out fine!

Thanks it is good to hear of other people's experiences with it @SusanmaryD I never actually thought I would be in this position and must admit the side effects sound horrible.  Good to hear your tumour size is stable, do the tablets not reduce the size of the tumour?  Am I hoping for too much.  Hope you had a lovely time in New Zealand.

Yes the lenvatinib did shrink the tumour quite a bit and it is now stable. I just read your profile - it sounds like you are having a very difficult journey. I see you and I are a similar age (I’m 69). I do feel grateful that I didn’t have to deal with all this when my son was a child, but it’s sometimes difficult to find a bright side.

good luck with lenvatinib, I hope it’s helpful for you as it has been for me. x