Hello Betty

Welcome to the forum. Youve certainly been through a lot of harsh treatment. I do not have tongue cancer but have had radiotherapy to neck throat jaw and tongue and found it brutal. After 10 years remission cancer has returned and Im now on palliative immunotherapy with cemiplimab. You may be prescibed similar drugs pembrolizumab or nivolumab. I get very few side effects from it itchy rash and fatigue. It has transformed my life and slowed the advance of cancer. I dont feel so ill anymore and have a fairly good quality of extended life with only moderate pain from metastases in my spine. I read this article on BBC which may be of interest.

https://www.bbc.co.uk/news/articles/ce82gderpl9o

I hope someone on this forum can give you more specific information on its effects on improving swallowing and speaking. If you are offered immunotherapy say yes.

Ed

Thank you Ed

This is exactly the type of info:experience I’m looking for

im glad it’s giving you some positive outcomes and obviously I’m hoping for the same

its Nivolumab I’m signed up to and just waiting for a start date

thanks for sharing and link.,

theres a minefield of technical info out there so simply your experience so far…is useful...and I hope it continues to go well.,…

Hello bettynardy, and thank you for posting.

I am sorry to learn of your situation. This must not be easy for you.

I can appreciate that it can be really difficult not knowing what to expect with a new treatment, and that there is a lot of uncertainty for you.

Hopefully, more people will post their experiences on here. You may also find it helpful to post on the living with cancer section on the forum, where more people may see your post.

You may have already seen our information about the treatment nivolumab and possible side effects.

In the meantime, if you would like to speak with one of our nurses on the helpline, you would be welcome to call us on 0808 800 4040, Mon -Fri between 9am and 5pm

Jemma

Thank you Jemma

ill explore website and see where that takes me

The condition means difficult to speak re helpline