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 

This is the same situation for my mum, who's 78. She had a Stage3C endometrial cancer diagnosis last June, hysterectomy, six rounds of chemo and five weeks of radiotherapy. It was tough, but she rebounded, and the oncologists were amazed (because of her age, they said!). But in October this year, she began to get a lot of back pain, and a CT scan in December (they finally did one after two XRays showed no fractures) showed the cancer had returned in the peritenaeum, omentum and a lymph in the back. She's just started immunotherapy and lenvatanib. I'm following to see how you all tolerate this, as mum has severe headaches, a lot of pain and nausea. Unfortunately, we didn't get a lot of information from the oncologists. We were told it was incurable, and that the maximum amount of time she could have immunotherapy was 2 years, but that the average time before the cancer progressed was 9 months. They told us the treatment was palliative. We took from that that she possibly had just months to a year left with us. But based on some of the comments below, it seems we might be able to hope for more than that. I'm not living in a state of denial, but I do think that hope is an important part of the treatment.   

Cassie    

I was diagnosed with womb cancer in May 2024 and had a hysterectomy, I was diagnosed with carsinosarcoma sarcoma which is a very aggressive cancer and it had already spread to 2 lymph nodes in my pelvis and a small nodes on my lung by the August.At that time my prognosis was grim- I started chemo in September and was due to have 6 rounds, unfortunately after 4 rounds and another scan , it was deded Chemo wasn't working for me so on 31st December last year I started on immunotherapy. For me it has been life changing! Initially I had 6 rounds every 3 weeks and then it changed to every 6 weeks, I have a scan every 3 months and that's a veryscary time but luckily at the moment my cancer is stable I have another one at the end of January. As far as side effects , I lead a pretty normal life now, They watch my thyroid results and adjust my medication(I was already on thyroxine) I have psoriasis which has come back after 50years! Also I have been recently diagnosed with diabetes which can apparently be a side effect but to me it's nothing as this time last year I really thought my time was up. I have had the best Christmas and instead of thinking it would be my last - Ime already looking forward to the next one. All I can say to you is be positive, don't give in to this dreadful disease and enjoy life.

What a lovely message 

I have an aggressive endometrial cancer I had a hysterectomy in January 2024 but unfortunately in March 2025 it returned in my peritoneal cavity I had 6 rounds of chemo therapy and it responded well but unfortunately it has returned quicker than they’d hoped I’ve now started immunotherapy just had  second round ( every 3 weeks ) my only side effects so far have been headaches and breathlessness 

the breathlessness worries me because I‘m

so active and it’s really effecting my life My team seem to think it’s anxiety but I don’t think so I’ve got an appointment on Thursday I’m worried it’s something else and worried it might stop me having therapy second round 3rd round of immunotherapy 

I swing from doom - it’s not going to work I’ve only got months to a high truly believing it’s going to work and I’ll still be here next Christmas 

Stay strong- your chemo worked initially and immunotherapy attacks the cancer itself so hopefully your next scan will show an improvement  

Thank you so much 

I work hard on being positive but it’s not always easy 

No its not - Thinking of you x