Neck cancer

Hi clzgw04

Welcome to our community but so sorry you have to contend with such uncertainty. 
Thank heavens your immunotherapy seems to be working so well. There are a few people on here who are on a course too though not Nivolumab. My understanding is that two years is the usual length of treatment if the cancer responds and side effects allow. 
It must be difficult but maybe you can find a way to just get on? Can you speak to your team about some counselling? Might that help? 
Best wishes 

Hi Ciz

I am so glad that the immunotherapy is working for you. Take the chance that it has offered you.

I was 59 when I was diagnosed with my first cancer and it certainly does make you think about your mortality.

I also have the ongoing possibility of cancer returning because the cause in my case cannot be eradicated only managed so understand what you are talking about.

I also went through all the emotions involved with the uncertainty of where life might take me.

Like you I felt that I had not had a chance to ‘smell the roses’ and do some of the things that I had always wanted to do. I decided that I would start working on some of these things in a sensible way. Not being silly and spending the kid’s inheritance as you never know where life is going to take you.

I now have a different attitude to life and enjoy every day for what it brings.

Here I am now aged 67, 8 years after my first cancer and still enjoying life. No one can predict the future so let’s make the most of the present and live our lives to the max.

Best wishes for the future.

Lyn

Hi Lyn

Thank you for your message and taking time out to  send it.

Your message has made me feel a lot better as you said it's a horrible situation to be in.

Perhaps there is light at the end of the tunnel

Also how it effects your live is unbelievable. I know longer enjoy food  because I can't taste it also I am in a lot of pain because of the neck dissection  but I am still here which is brilliant and intend to be for long time

Thank you for

Gary

Hi Gary

Recovery can be a slow process but time changes a lot of things for the better. You are still in the early days of recovery so hang in there. The pain and discomfort of the neck dissection will eventually go away. I now only have a tight feeling along my neck and some changes in sensation but you do eventually get used to that.

Same applies to taste. It is still early days and everyone is different with taste return. It took me some time and then taste continued to be altered to a degree. I stopped liking the taste of some things and started to eat others instead. I had to replace tea for hot chocolate as it tasted really strange. Over time more and more taste does return and you learn to replace things that no longer taste quite right.

Enjoyment of food will return.

Time is a great healer physically and emotionally.

Best wishes

Lyn

• Hi Clzgw04, Hi havent posted on here for a while. My husband was diagnosed with CUP I.e.cancer unknown primary in early 2017, 4 years ago. He was instantly given the incurable diagnosis at the age of 43. They never found his primary but suspected due to spread it started in head and neck and treatment was delivered with this in mind. 6 months platinum based chemo, immediate growth on finishing followed by 9 months nivolumab stopped due to rare side effect. We cant believe it considering the initial picture that was painted to us 4 years ago but he is still here, still no growth over 2 years of having his nivolumab stopped. We are enjoying life as much as we can and I am thankful for each day that we didnt expect to have together and with our family. You say the cancer has now gone from your body, that's brilliant and long may it continue. One of the things we have learnt through this journey is there are so many unknowns from the start of our journey with the diagnosis of unknown primary to this current stage to the unknown of how long the effects of the nivolumab will last. However I am just glad that the nivolumab has got us to the point we are at now as there were a few people on here I was corresponding with a few years ago who did not get the positive effects from nivolumab that my husband and you have had. I understand the scans  are a time of worry as my husband has had and still has 3 monthly scans throughout our journey but I usually say to my husband you dont feel any more unwell than what's usual for you so it's unlikely theres anything in regards to growth to worry about and so far this has been the case. Good luck to you I wish you all the best and please try to put your feet up and focus on the positive the nivolumab has done what you wanted it to.

Thank you for your brave,positive,,story,it is inspiring,I love your philosophy,good luck to your husband and family,

Hi Sunflowers, thank you so much for posting this. 

Messages regarding immunotherapy pop up now and again and there are few people with experience to share. I am always signposting to posts from some time ago.

Would you mind dreadfully if I tagged you when a new member pops up with all the questions and worries we all have.

I can quite understand if you don't want to be bothered but your story is so wonderfully uplifting it would help so many. I read it this morning and I am in tears.....so happy for you both.

Best wishes

Hi sunflower thank you for your message .it.was so nice to read your husband and your story .

It has given me hope and perhaps a future to look forward to once covid is out of the way .I know a few people that have been on Nivolumab and after 4 years they are still going strong .And yes it is a worry every 3 months a CT scan which I had yesterday but as you said I feel fine so don't think I will.have a problem I will have been on Nivolumab a year in July so far everything  ok fingers crossed

I

Hi Clzw04

We are not uncommon us "primary unknown" people, but it is not common.  I does layer on another level of worry.  After a year they found my primary - only now it has disappeared again! 

I am interested in your immunotherapy.  I've yet to discuss treatment options with my team since my last surgery 10 days ago, but my thinking is that the cancer has disappeared twice now, maybe the immune system is dealing with it and it just needs an additional kick to get the job done?? 

Hi Beesuit, I dont mind been tagged in to discussions at all. I can recall struggling to find people with experiences of immunotherapy inparticularly nivolumab for head and neck cancer treatment when my husband started on it and understand that people want the knowledge of others experiences so yes feel free to tag away.  Clzw04, its wonderful to read that you know a few people who have been on nivolumab and after 4 years are still going strong, good luck with those scans. Wishing you all the best.