Mouth Cancer metastasis

Hello Suz79, so sorry to hear about your dad , he certainly had a tough year and he has done remarkably well to get through it all and get the all clear as far as the head and neck are concerned . If afraid i cannot help with the issue about the cancer spreading to the lung so i dont know what treatment is available . If i was you re-post in lung group as they should be able to offer the correct advice. sorry i could not be of anymore help , lets hope they manage to give him a good quality of life with the tretment , all the best ,take care.

                                                                             Chris x

Hi Suzanne,

Firstly, I have just signed up after having been following this group since I was diagnosed in Oct 17. I’ve not felt like contributing until I read your post, as I’ve never really had anything to add. But here I am now!

I was in a somewhat similar situation, with spread to my chest/lung, but the original disease had not been cleared by my chemo/radiation. I was put on immunotherapy (nivolumab) and within two months almost all of the chest/lung disease had resolved. Unfortunately a month later things started developing in my neck so I was taken off that drug. I then got a place on a trial that amongst other drugs included another immunotherapy drug (Keytruda). The trial didn’t work, but after a combined six months on he two immunotherapy drugs, there was no sign of disease outside my neck/shoulder. Now eight months after being told it had spread it is still only in my neck/shoulder, but that is proving a tricky one. Incidentally, my original tumour has now cleared as well!

Sorry if it’s been a bit of ramble, but if you haven’t already I would strongly recommend the immunotherapy option. Like all these things it doesn’t work for everyone, and it can work partially like with me. 

All the best,

Aussie Colin

Thanks Chris for your response, I’ll post on the lung group also.

thanks again

Thanks Colin for your response, immunotherapy is something I’ve been reading up on with some great success stories so will def be asking about this.

wishing you all the best in your recovery.

suzanne

Hi Colin, I hope you don’t mind me asking this. Did you have to ask about immunotherapy or did your doctor offer it to you? My husband is going to see his doctor on Friday after he’s been told that the 30 radiotherapy sessions didn’t get rid of it completely. And also were you offered the trial or did you have to find that yourself? Hope to hear from you and wishing you all the best, Tricia

Hi Tricia,

A bit of both really!  I’m in Australia, and at the time the drug (Nivolumab) was only just being made available through the public system (Oz version of NHS). We went into treatment expecting a very large bill each month, but just at that time the public funding was approved. I’m fairly sure now it would just be offered as the standard treatment if radiation hasn’t worked.  Bottom line, if the Doctor doesn’t mention it, then ask. 

With the trial, it was suggested by my specialist. However, recent experience suggests that they only really know much about trials that are local to them. There’s a couple of great websites: clinicaltrials.gov, which allows you to search yourself; and cancercommons.org, who will send you a list of relevant trials once you’ve provided all your details. 

Hope this helps,

Colin

Hi Colin, thanks for your reply, that’s helpful. We will definitely ask about it tomorrow. Thanks again and all the best, Tricia