Pembrolizumab (Keytruda) and Lenvatinib ( Lenvima, Kisplyx)

Hi Sune and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.

I don't have the experience you're looking for but I noticed that your post hadn't had any replies yet.

I searched for previous posts which mention 'pembrolizumab and lenvatinib' in the group and found these for you to have a look through to see if anyone mentions the sort of side effects that you're experiencing.

It would be great if you could pop something about your diagnosis and treatment so far into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

x

Hi Sune. I just came across your post when researching Pembrolizumab and Lenvatinib as my Oncologist is just about to start me on this treatment. I'm now Stage 4, grade 3 Womb cancer with mets all over but now also in Liver and Lung. I'd only finished chemo at the end of March, CT scan showed mets hardly visible at the end of May but problems came back in July.

I just wondered how the treatment was going for you, has the muscular pain eased? I'd be interested to hear from you.

Hugs, Barb x

Hi Sune

I started this treatment in August. The worst part of it is when your thyroid is breaking. Mine went from normal to overactive and then underactive. It was awful. I have never experienced fatigue like it.

I started on 20mg lenvatinib and 3 weekly pembro. Im now on 14mg lenvatinib due to toxicity build up. Im itching like mad and have an achy heel but other than that no sore mouth  no sickness, no diahorrea etc. Please report all of your side effects so they can be managed. Ive also had a break yo let the toxicity levels drop and a 7 day break for a tooth extraction.

I had a 12mm breast met which I now can't feel and a small 20mm met on my pelvic iliac wing which caused me to walk with a limp. I was on 8 paracetamol and 8 tramadol a day to manage the hip pain. Now I don't take any pain medication and have no limp. I can now walk 2.5 miles comfortably.

Im due my first scan on a couple of weeks after starting treatment so fingers crossed its had a positive impact.

Good luck keep us posted how you get on.

Much love 

Lissa

I have stage 4 kidney cancer if that helps others in this forum potentially starting this treatment given that its new to us.

MrsGos

Hi Lissa, good to read your progress whilst on this treatment. I'm starting it for Stage 4 Womb cancer mets (Liver, lungs, peritoneum, pelvis etc. etc) 

For me the reduction in pain levels is interesting. When I saw my Oncologist on 13th September I had little pain except for localised pain when yawning, sneezing and coughing and only near my liver. Just a month later I've pain right across my middle and it's making me really miserable. I'm on 8 co-codamol as well as oral morphine. The trick is taking the medication just before the pain really kicks in. Then it takes 1/2 hr to work.

I'm sure I'll be able to put up with the itchy skin. Have had to learn to live with peripheral neuropathy which drives me mad.

Hope you don't mind I've sent you a friend request, Barb xx