Immunotherapy? Or not …

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Reaching out to see what the general consensus of opinion is. My husband had treatment for oropharyngeal cancer. Sadly, although cleared from his throat, we’ve been told that it has metastasised to his hip and two of his vertebrae. The only treatment that has been suggested is immunotherapy. The side effects sound so awful that he’s thinking of not having it and letting the cancer take its course. He’s 66 and very active, so quality of life is far more important to him than length of life. Has anyone had any good results? Terrible results? 
We’d be very grateful to hear about your experience 

  • Hello, you can read my blog for info of my progress with immunotherapy treatment.

    I consider myself lucky, I’ve been able to tolerate the treatment, though I do get tired. Slightly itchy skin, I take antihistamine daily, and sweats and chills which comes and goes. 
    I wasn’t so worried about the actual treatment compared to the side effects I’d read about so I totally understand your husbands worries.

    The staff are so supportive and vigilant when you start your treatment so I felt very safe. I believe the alternative if I did not take treatment was grim. 
    Overall my tumours have halved and the last 3 scans have stayed stable.

    I hope my experience reassures a little. I appreciate that even the doctors can’t give guarantees but reading folks experiences go to prove no 2 people react the same.

    Take care of each other xx

  • Hi  

    Come and join us in the HEAD AND NECK CANCER GROUP

    There are a few there having immunotherapy

    One forum member particularly is doing really well and is stable after two years of Pembrolizumab  

    Have a look at his profile where he has a link to his blog. He might pick up this tag and reply to you here.

    The side effects sound so awful

    They can be but most people are relatively unscathed

    I've done a search in our group for you so you can look through some of the recent posts HERE

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I BLOGGED MY TREATMENT 

    Macmillan Support Line -  0808 808 00 00 7 days a week between 8am-8pm

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  • Hello, you can read my blog for info of my progress with immunotherapy treatment.

    Hi. That sounds so encouraging. really pleased for you. I hope you continue to be well. IT can work wonders. 

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I BLOGGED MY TREATMENT 

    Macmillan Support Line -  0808 808 00 00 7 days a week between 8am-8pm

    Community Champion badge
  • Hi, as mentioned, I also had oropharyngeal cancer that subsequently spread to both lungs. I started the immunotherpay drug Pembrolizumab around Nov 2021 and ended my 2 year course in Nov 2023. Whilst I was also very scared of the potential side effects, I thankfully had very few, and at the moment am showing 'no evidence of disease' in my 3-monthly scans, and it's been like that for over a year now. So what was a terminal diagnosis has turned into something different and of course better.

    But side effects can be horrendous as you state, but you are carefully monitored for these. And recent research has shown that even a reduced stint on Pmebro can still lead to longer life expectancy. 

    Like many others I kept a blog of my treatment, but I'd be more than happy to answer any questions you might have.

    https://ansmackay.wixsite.com/uclgeography/post/immunotherapy-the-revolution-in-cancer-treatment 

    All the best, Ans 

  • Thank you Ans. You're on the ball this morning Slight smile

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I BLOGGED MY TREATMENT 

    Macmillan Support Line -  0808 808 00 00 7 days a week between 8am-8pm

    Community Champion badge
  • Thank you so much for replying, and so quickly. We really appreciate it.

    1. I’ve just quickly read through your blog, and find myself moved, emotional, but above all encouraged and strengthened. Thank you so much for your reply.
  • Now that was worth reading! So informative. We now feel better armed for our meeting with the oncologist today to decide whether to give immunotherapy a try or not. Which was exactly the reason I posted my question. Thank you SO much for replying.

  • I’ve just quickly read through your blog, and find myself moved, emotional, but above all encouraged and strengthened. Thank you so much for your reply.

    That’s such a kind reply. Thankyou 

    We now feel better armed for our meeting with the oncologist

    Good luck. Let us know how you get on. 

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I BLOGGED MY TREATMENT 

    Macmillan Support Line -  0808 808 00 00 7 days a week between 8am-8pm

    Community Champion badge