Nivolumab immunotherapy treatment

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After being told that chemo radiation has not been successful for my husband, he had his first immunotherapy treatment of nivolumab 3 weeks ago. For the first 10 days he had some mild diarrhoea, but otherwise he was okay, and much better than he was after chemo. He’s had a couple of episodes of nausea, but nothing more than he was getting prior to the immunotherapy. However, there is new swelling on the left side of his face and tongue, and the pain in his neck and jawline has intensified, which is possibly nerve pain. Has anyone else experienced swelling at the site of the cancer after treatment? I’m unsure if it could be related to the treatment or cancer progression? We are due to see the consultant tomorrow so hopefully he can shed some light. 

  • I can’t help I’m afraid and it would be wrong to speculate but just wanted to wish you well. Good luck for tomorrow 

    Dani 

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

    I wrote a blog about my cancer. just click on the link below 

    https://todaymycoffeetasteslikechristmasincostarica.com 

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

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  • Fingers crossed for tomorrow. All the best to both of you.

    Regards Ray.

  • Fingers x for tomorrow jyst write everything down as we all get flustered at appointments. 
    hugs Hazel x

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now  6 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help

    2 videos I’ve been involved with raising awareness of HNC and HPV cancers 

    https://www.instagram.com/merckhealthcare/reel/DBs8Y0niJ8N/

  • Yes, I have a list of questions and things to discuss. Thank you Relaxed️ 

  •  Hi, Sorry to hear about your husband.  I can’t answer your question but can tell you are experience to date as my husband is on same treatment I think.  My husband has stage 4 cancer and has just had his 9 treatment, so far so good, 4 out of 5 tumours have gone and no new ones.  My husband has been very lucky as the only side affect has been low platelets.  Saying that we have been to,d that many people get really bad side affects but still get very good results from the treatment.  My husband did not have chemotherapy as he was told it had spreed to far, at the time we just thought that was it but they said he qualified for immunotherapy, thank god he did.  This was last September.  

    we have heard so many good things about immunotherapy so I hope it is good for you.

    take care

  • Oh wow, that is a fantastic result and I am very happy for you. Can I ask if you noticed any improvement in him as he was having the treatment, just from day to day, perhaps reduction in pain, and if so, how soon did the improvements begin? Was it soon after the first treatment or later? My husband is having his 2nd infusion next Wednesday. They have told us his biopsy markers are 40, which is a good indicator that the immunotherapy could work. Apparently if it is between 0 to 20 it’s not likely to work. He hasn’t had a serious side effects. He just feels a little sick occasionally and a sight bit of diahorrea for the first week after infusion, but nothing to worry about. I’ll let you know how we get on over the coming weeks/ months. Thank you for helping me maintain my positivity. Good luck to your husband too x

  •  I can’t answer your question but can tell you are experience to date as my husband is on same treatment I think.  My husband has stage 4 cancer and has just had his 9 treatment, so far so good, 4 out of 5 tumours have gone and no new ones.

    Thank you so much for this update. It means a huge amount to those who have failed treatment one way or another

    I am so pleased for you both

    Dani 

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

    I wrote a blog about my cancer. just click on the link below 

    https://todaymycoffeetasteslikechristmasincostarica.com 

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

    Community Champion badge
  • It was a week after the first treatment he seemed to cough more so we went to hospital and they did a scan, we were shocked as just after one week the tumours had already shrunk a bit, we were shocked. Within a few weeks he stopped wheezing, I think that’s because the large tumour on his nymph node in his chest had reduced in size.  The doctors were please but they said normally it’s the people that have the side effects that seem to do better.  My husband has had no other side affects, perhaps a bit tired but that may be age lol

    i hope it works for you but be forever optimistic.