Hello all. I havn't been on here for a long time, partly because my own emotional support needs have changed, and I don't rely on the online community support so much any more - I guess that is good.

Sadly, I continue to have issues with metastases. I don't recall where I was at when I was last here - and one thing I havn't got any more of is patient! So I couldn't be bothered to work out how to find my last posts.

So I'll just go with the last year. I was told about a year ago that my lung metastasis was back, or probably, they'd never managed to get it all when the removed part of my lung. Sadly, it is in a position where they can safely perform neither surgery, nor radiotherapy. It is right by the heart and major groups of blood vessels. So suddenly I was officially 'chronic', i.e. incurable.

Meanwhile, my mother was slowly dying from bowel cancer. She passed away in April after 2 years' of brave misery.

So I was put on the 'Extreme' chemo protocol - a mixture of cisplatin, cetuximab and 5-FU (Fluorouracil). Originally aimed at 6 sessions, one every 3 weeks, I almost died from heart-failure at session 5 (probably due to the 5-FU), so we stopped. The good news was that my tumour had regressed massively. The treatment was really debilitating, but I've recovered well and indeed I need to try to start losing weight again - all those pain au chocolats and Magnums I allow myself!

They have continued my treatment with weekly cetuximab, which is a pain because it's a day week out of the diary, but it's been keeping things at bay and I've been able to rebuild my life again (again again). The worst of the side-effects are whitlows - a wonderful old-fashioned word that I didn't know before, it is painful infections of the nails, in my case fingernails; very dry skin - very very dry skin, it's like touching a dead snake - and acne-like spots. These last are mostly kept under control with special antibiotics. I also get a really sore nose! But hey, I'm alive.

Anyway - I have 6-weekly scans, and last week my consultant said that although slow, my tumour is nevertheless gradually increasing in size, so he considers that the cetuximab is no longer effective. They are going to try to get me onto the experimental immunotherapy programme being run jointly with, among others Southampton University. It has had some very good results for small cell lung cancer and melanomas, but has not yet been proven for head and neck cancers (because although my metastasis is in the lung, my primary was a tonsil cancer).

This is both great and scary. I mean, it's great that there is an alternative, isn't it! But it's scary too, because it is the last ditch approach.

Mostly it is hard to keep rebuilding... and again... and again... and I am finding it harder and harder to get the impetus back to get back on my feet again. My lungs are not good, I cough a lot, they have long term damage from years of bronchitis but also they are affected by food particles because I don't swallow properly. My swallowing has been getting more difficult recently - there is a continuation of the effects of radiotherapy, even after 5 years, and a hardening of the - whatever. The bits. Generally I have been finding things get lodged just around the tongue flap point, it's right at the curve of the throat and I don't have muscle control at that point, so I am getting problems with that and my lungs are understandably not happy about it. Not to mention the tumour.

But I am really impressed with the positive results they seem to have been getting. See
http://www.southampton.ac.uk/youreit/

So, there you are. The ups and downs of life with cancer. But it is still life, so far.
Original Post
What a chapter of disasters and I am not surprised that you find it more difficult each time to get back on your feet, but well done for doing it - again....

I was so sorry to hear about your Mum. It never rains.... My cancer was right at the back of the tongue (I was treated in Southampton in 2012) and now have fibrosis - they didn't tell me about that one! The left side of my tongue is numb and the right side is very sore. I also have swallowing problems with weak tongue muscle and an epiglottis that doesn't work. However, it is the tongue they are more worried about, rather than the epiglottis.

Dry skin. Yes this is certainly a problem and for the past couple of winters I have had at least three fingers per hand wrapped up in sticking plaster (doing my Jeremy Fisher impression) with split fingers and whitlows - very painful! Now I plaster my hands with Honeycomb Skin Care Foot & Ankle cream. It is absolutely brilliant. My hair was always dry but now it is even harder work to get it to look better than if it had had 10,000 volts through it and standing up on end in a dry frizz.

Look, I wish you all the best for the treatment and please let us know how you are getting on with it.

Life's a bitch - then it has puppies.

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