Immunotherapy no longer working

Hello Knottlagirl

I am sorry to hear of your recurrence of endometrial cancer.

The side effects of the immunotherapy sound pretty tough to cope with and I am sorry to hear that the treatment is no longer working. 

It must have been hard when the consultant suggested considering what to do next. I can understand that you feel quality of life is the important thing. 

All I can do is suggest that you take this time to weigh up all the information and to perhaps write a list of questions to prepare for when you see the consultant. For me it would be along the lines of ..

What can I expect if I do carry on with the treatment?

What can I expect if I stop the treatment?

Is it worth continuing for a short time to see how it affects me?

Are any other forms of treatment a possibility?

Are there any trials that I could be put forward for?

As the treatment has kept it partly stable, would surgery or other treatment be an option for the liver spots?

What support will I get if I stop the treatment?

What would they recommend if it was a family member? 

You may well have very different questions but these are just an idea to start from perhaps.

Only you know what is right for you and what you feel is most important. I would recommend giving the Support Line a call and talking it through with one of the nurses- they will know about the treatments and what you can expect if you continue or stop them. Sometimes also talking to someone neutral can help.

I also wonder whether you might find another forum helpful. It is specifically for people whose cancer is incurable and there may be others on there who have had a similar experience as to deciding whether or not to carry on with treatments. I will pop a link below- in case you feel it may be helpful

Living with incurable cancer forum | Macmillan Online Community

I hope this helps a bit, I am sorry that you are having to make this decision. It must be very difficult.

If there is anything more you need, then please do ask.

Jane

Thank you Jane for your reply, there's some really helpful questions here. Babs xx

I started Lenvatnib/Prembolizmab in July 2021. I had to stop taking it in January 2024 due to there being too much protein in my urine. The next scan I had in March 24 showed very small cancer progression. My oncologist has said I am to go on carboplatin, but wait for my next scan to see if there is further progression(I had this last Saturday and results are due next Tuesday). I feel OK and have put about a stone on since stopping the treatment. I then found a clinical trial for phase 3 for a new drug to target endometrial cancer. I went to the clinic but as , according to the  oncologist I was 99.5% cancer free on my scan in March they don't know if I qualify to take part as in his words "I don't want to make you feel ill if you look and feel great". So it all hinges on the scan results as to what happens next. I know the carboplatin works as I've had it before but who knows. The trial may be the cure that we're looking for. There are plenty of advances being made in cancer treatment every day and quality of life and feeling well should be priorities in whatever treatment we have to go through.