Oesophageal Drug Trials

1 minute read time.

FormerMember

2 Feb 2010

After chemo (dad's body couldn't cope with it so only had 2 and a bit cycles) and radiotherapy (also not very successful) my dad has now been put on the Gefitinib drug trial (been on now for 4 months). This has been successful in the way that it has stopped all tumour growth and spread (yippee!!).

However, dad's quality of life is crap. He survives on pancakes and sponge cake with a wee bit of tuna on toast occassionally. Everything else either sticks or he won't eat. He refuses easy food such as soups or the Fortisip drinks. He is barely surviving on the amount he eats. He also does nothing apart from walk from his bed to the sofa and back. Is this all we can expect? He just does not accept that the tumour not growing is a good thing and he can start to live a little. Mum is going round the bend and I am not far behind, having to support both of them.

I am not expecting him to be his old self but don't know where to turn. Is he depressed? Is anyone else on the Gefitinib trial and faces the same? Don't know where to turn. He lies to the doctors saying he is fine and is eating and getting around. He won't talk to the MacMillan nurse or dietician. Is this it? Its been a year of hell since he was diagnosed and is don't seem to be getting much better.

FormerMember over 15 years ago

Hi Bev69

I felt so sorry for you when I read your blog. My husband has stage IV oesophageal cancer and I know how very difficult and frustrating this business of eating can be - for everyone involved.

It is my experience that what can and cannot be eaten with this disease is very strange - things which you think that the patient should not/could not eat, you find that they can. Things that melt in the mouth, like a really good sponge cake can do the trick, whereas the wonderfully healthy blended soup can't.

For help and advice, I suggest that you post on the oesophageal (gullet) cancer forum. There are many people there who might be able to advise - they may even know someone who has been on this trial.

Could you talk to the Mac nurse/or the GP and suggest that your dad may still be experiencing pain? Or if the tumour has shrunk, he may be getting acid reflux problems. Both of which could be addressed quite easily, but will be making him feel miserable.

It is also worth remembering that for someone who has/had this cancer, eating has caused so much pain and discomfort in the past that they can become quite frightened of eating and, therefore, stick with the things they know they can manage.

I hope this is of some help.

Wishing you all the best, Grace
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FormerMember over 15 years ago

Yea experimentation is the key. I loved my food before I was diagnosed with Oesophagus. I go around and try all sorts of different food from pasties to exotic soups. I make my own bread with a soft crust. This is easy to swallow, or I find it so, some may not, as it doesn't have a lot of stodge like shop bread. Try some of the M&S foods like Cornbeef hash. I do sausages in gravy and onion to soften them tastes good no problem swallowing. If one can eat toast then not all is lost. Little and often seems to be the answer. Chinese, Italian, I try them all. Sometimes I fail but Hey who doesnt fail once in a while. I try not to overwork my gullett, but I'm not loosing weight which is important. Food = energy= enthusiasm for living!!!
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