Immunotherapy

Hi Teresa,

Welcome to the Womb group.

I am sorry to hear that your last scan showed some metastasis to your lungs/liver. I can understand that it is a worrying time. 

My own treatment was surgery, chemo and then radiotherapy. I have not had immunotherapy but there are quite a few ladies on here who have had the treatment. Hopefully they will see your post and respond. 

With immunotherapy and targeted therapy there are different medications and regimes so it may be helpful if you are willing to share which type you are going to be having. From my understanding the side effects can vary due to the different types.

This link takes you to the Immunotherapy thread in this group. It may help to have a look and see if any one is on the same treatment.

 (+) Immunotherapy support - Macmillan Online Community

This link has some general information that may be helpful.

Targeted And Immunotherapy Drugs For Womb Cancer | Cancer Research UK

We also have the Support Line available everyday from 8am-8pm if it would help to talk things through.

I wish you well with your treatment. 

Jane

Hi. I had the same diagnosis/same treatment pathway. I was one of the first to receive the pembrolizumab and lenvatinib targeted therapy in 2022. The pem gave me an underactive thyroid and the lenvatinib high blood pressure. I was on this treatment for 28 cycles, 3 weekly. I had an infusion that took about half an hour then 2 tablets of lenvatinib every day (20mg). It says take them first thing, but as I was tired out by noon I took them at night before bed and that worked better for me. Side effects were diarrhoea (take loperamide  ) loss of appetite, but the upside  was I lost 3 stone, that I desperately wanted to lose. I didn't take the full course as I had dangerously high protein in my urine so had to stop. I was then able to go for a further year without any treatment as although the cancer was active it was very slowly growing. I stopped that treatment in Feb 2024 and started more chemo with a carboplatin /caelyx  mix in Jan 2025. The cancer is active again (according to CA125) and I have another scan in two weeks which will tell if and when I need more treatment. I found the treatment manageable, despite my side effects and it worked for me. I was diagnosed 5 years ago with a "you've got a maximum of 5 years" prognosis but I'm still here and not prepared to give up any time soon. Hope this helps. 

Thank you so much for replying hope you get positive news from you scan. Thank for the advice re side effects 

Hi this is pretty much the same as me I start immunotherapy drugs next week or the week after 

hysterectomy a year ago but it has returned in peritoneum and omentum I’ve had six round of chemo but after 3 months it’s growing again scan results not back yet but ca125 gone from 100 to a 1000 in a month ! 

when do you start it would be good to know how you get on 

I’m 66 and live in the UK