Chemo brain and weight loss - Oesophageal Patie...

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Chemo brain and weight loss

My husband is 4 months Ivor Lewis post-op and he is 76. Pre-op he didn't have radiotherapy as he has a pacemaker, he had 2 courses of chemo each one lasting 5 days and nights with a 3 week interval between. We were given some info about side effects but I don't recall any about the effect on his brain and his thinking processes. He has become very forgetful and finds it difficult to think clearly. I wonder if this is just old age catching up or is it the effect of the chemo. Previously he was quite a sharp old cookie so it's a tremendous change.

Also I was interested in the posts about weight loss, as he has lost just over 3 stones in this 4 months. He has great difficulty eating, and this is a man who loved his food, and he's just shrinking before my eyes, he is very tired and weak, he has no appetite, doesn't enjoy anything, doesn't like it when I do what the dietitian has advised and give him fortified milky drinks, or put cheese in mashed potatoes etc. He says he has a mental block about eating. The cancer nurse thinks he may need a stretch, and his GP is considering anti-depressants.

Any advice will be most welcome.

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Hi Laverock, Chemo brain is a very real thing, I found it very difficult and disconcerting for a long while after treatment I found I couldn't write the programmes I did before to analyse data as I could not get the logic right, and speaking foreign languages was like wading through mud all of which had been second nature before. My oncologist said I need d to learn something totally new and help my brain relearn. He described it as a hard disc that has had its registry wiped out. I learnt the Tarot, did Suduko and crosswords, played online games which need logic, and he was right slowly it all came back. I was depressed and lost interest in life, I did not have any energy, I could not do what I did before, I felt I had no value anymore and was feeling guilty that I had survived and didn't seem to be doing very well. Things do improve with time and the last thing I wanted to do was take any tablets that made me feel even more foggy. The fact I had lost interest in food and found it a chore to eat didn't help either as I did not have any energy. It takes ages to put on weight and if you try eating bigger meals you end up going backwards. I found grazing all day long helped on a variety of foods, forget about them being healthy just eat exactly what you fancy, I ate a lot of cheese, but no bread occasional grapes or apple slices with it. Sausages, I had a craving for Costco carimlised onion ones, I didn't have a meal just a of sausage when I fancied it, I had a selection of fruit fools and puddings in the fridge, always a tub of cream, I made some home made soup and dipped French bread in it, I had a lunch box with crisps, diaryleas triangles or baby bel, sometimes dry cereal in a bag, (I liked cinnamon S and crunchy nut cornflakes,) I always had food available and no set mealtimes or plates of food, I ate a lot of chocolate, (a friend always sucked Everton mints for a while) I hated the drinks from the dietician along with many others and we made our own versions. I can remember feeling like he does Feel free to message me Lizzy

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Thank you all for your replies, I feel we are not alone and there is a lot to hope for.

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Thank you Lizzy for your very positive reply. Yes I had wondered about the chemo effect, I wonder how much research has been done about it, or perhaps it's the effect of a prolonged anaesthetic, all I know is there's a big change. His cancer isn't the only thing to have been removed, his whole personality has changed, from being a bright, energetic, enthusiastic man to a shrivelled up, weak, thin, dour individual, it's awful to see him like this. He's had a hip and knee replacement and bounced back from those ops quite quickly, keen to do all his exercises in order to recover, but this is different , he's like a different person, he doesn't seem to have much in the way of enthusiasm for anything.,he's weak and tired, it's very sad. I'm a retired nurse and I'm his full time carer, and I'm very happy to do all I can to help him recover, we both wish we could see a little progress or are we asking too much at this stage?

Your comments about exercises to stimulate his brain are interesting, he always did Sudoku but now finds it very difficult, even the easy ones, he's a retired cabinetmaker so working out figures was a daily task in his working days and the Sudoku was a pleasant pastime, now it's a difficult chore. Maybe he'll take up learning to play the guitar? And your comments about food are helpful, good ideas for him.

You and one other have made negative comments about the use of anti-depressants, he'll see his GP in a couple of weeks about that, and there have been no comments about a stretch, it doesn't look as if that was required for any of you? We'll try to keep positive.

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Just a thought but sometimes the effects of a long anaesthetic can cause forgetfulness and take time to resolve in the older patients, may not be the chemo. It's a worrying time but there is plenty of help out there. Thinking of you Sally

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Thank you Sally, for your reply, that's an interesting point.

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Hi Laverock,

I am so sorry you are both going through such a tough time.

My husband didn't have post chemo either, but other than being tired didn't suffer from forgetfulness, but as he says we probably wouldn't have noticed any change as he's the most absent minded person anyway!!!

On the eating front, Dave is 14 months post IL and still has problems with eating, he was small to start with and no weight to lose, but still managed at the lowest to lose almost 1 1/2 stones.

Liz Crisp has offered good advice and grazing is still the only way forward for many. soups, cheese and potato mash are easy to eat. Rice and bread/butter pudding, Angel delight etc were easy for Dave too.

Dave like your husband was a man that adored his food and has struggled to come to terms with the loss of never feeling hungry/full, and having no interest in food so understand how you feel.

It's awful for them and upsetting and frustrating for us too as their is little we can do to help. Things will gradually improve for you both.

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Thank you Lynnbibb for your reply, you make some interesting comments, and yes it is awful for them. We'll try to stay positive.

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Hi Laverock. Firstly, it is impressive that he's gone through such a huge operation at the age of 76. So he's physically strong. Now comes the test of mental strength! I can only second the previous replies. Eat whatever he fancies. I craved a few things like crumpets (lots of butter but choose quality ones which are lighter - supermarket ones are too dense) and I find porridge with some fresh berries easy to eat. You could also add in the food supplement drinks to it if you've got any. Most of all, if you can, find one of the support groups to attend where you can both speak to others who are going, and have gone, through the same or similar things. Hopefully this will help get him started on the road to recovery - it sometimes takes a lot of willpower as well as the support of you and others. Good luck with everything.

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Thank you for your reply, Quicksilver, and yes though my husband is 76 he was very fit before this, played golf, bowls and curling and walked our dog regularly, it's such a massive change physically and mentally, he's hardly the same man. Willpower is the magic word, and we'll persevere with the eating, thanks for the tips about that.

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Hi there chemo brain still affects me 2 years on so a few months is quite normal. Regarding food we lose our taste buds and heave at certain foods. I think it is psychological and to do with chemo. Certain foods I couldn’t even put near my lips as it reminded me of chemo.I hated fuss about what I was eating and had to politely tell my husband and kids I’ii eat in my own time. I grazed on snack type things cheese crackers, crisps, toast. I couldn’t take full fat anything including ice cream and too much sweet things, it caused me dumping. The new plumbing takes a lot of time to get used to. I am 56 years old I lost 3 stones too but it has stabilized. I found having a little walk between eating also helps to digest.

I can eat little and often the size of a child’s meal at meal times now. Also the foods that made me heave I can eat now.

It is like being on a rollercoaster.

Good Luck

Debbie

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Thank you for your reply, Debbie, and for the tips about eating. Yes now you mention it, at the beginning when he was eating post-op he said it reminded him of the way he felt after his chemo, and yes, like you he hates me to make any fuss at all about his eating, and yet how can a wife who loves her husband see him almost wasting away and turn a blind eye. It's a difficult situation but it's comforting to know that we are not alone and that hopefully things will improve.

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The chemotherapy, surgery and weight loss will all have taken a physical toll which is likely also to have a mental effect. It is early days. The weight loss is normal. (I lost 25% of my body weight and it has never fully returned). He will get better. I would not take anti-depressants. All the best to you and your husband.

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Thank you Spikey, it was good to hear your comments, we have to remain positive.

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It sometimes helps to find something to take the mind off everything to do with 'all of it'. Daytime tv, a good book, radio drama, a game of patience, crosswords, daft videos on YouTube - just relaxing with 'normal stuff', even if it's stuff that we wouldn't normally do, or watch, it can be a welcome escape from the constant awareness of 'how we feel'. I was 72 when I had my op, I didn't have chemo so my experience was almost certainly less debilitating than that of your husband but 'as an oldie' who's ingrained routines were beyond my ability, I needed something to occupy mind - other than 'how I felt', 'what I fancied to eat' and so on. At four months post op I was still being sick everyday so even when I did feel hungry I didn't fancy eating anything but - if my mind was elsewhere I'd pick at biscuits, crisps, the odd sandwich - anything, almost without realising it. I watched some rubbish and it was mainly mind numbing but I sipped, nibbled and rested - it wasn't what I wanted to do, but it seemed to be what I needed. I found it difficult to maintain concentration for some time after the op, my doc put it down to the anaesthetic and I lost three stone - two of which I was happy to let go, now - six yrs later I'm about 4lbs heavier than I ought to be but I'm happy to hang onto it. Four months post op is still very early days, even for someone much younger than us oldies. Wishing you both well.

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Thank you, Magpuss, for your reply and your comments. Yes these diversions are being used, particularly daytime tv,and a good book, though he finds it hard to concentrate, and he struggles with Sudoku which he used to love, so I think Liz Crisp has hit the nail on the head about the effect of chemo and how to deal with it, or it may be the effect of a prolonged anaesthetic. He certainly seems to need a lot of rest. He's not being sick every day so that's a plus, just no notion for food, but he makes himself drink the Fortisip and he does nibble and eats small amounts of what I make us so we're making progress. And the main thing coming through these replies is that it's early days. We were advised by his surgeon and others that it would be a 6-9 month recovery period but I think that's wishful thinking considering the progress he's made so far. But we'll remain positive.

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Fortisip is horribly sickly, a savoury version would be much better but I suppose the sugar content is meant to fatten us up. My grandson's, thought it looked and smelled like milkshake until I gave them one to share, they soon changed their minds - when boys of 9,11 and 12 say it's too sweet, it's definitely too sweet!

I was told recovery time was 6 - 9 months, my GP knew better, he said 12-18 months. In 6-9 months everything had healed, nerve pain was far less frequent and I'd got used to eating small amounts, more often and so on, so I suppose from my consultants point of view l had recovered. My digestive system took a good bit longer to settle into it's new 'normal' though, that affected my energy levels, and my mood - so my GP's timeline was much more realistic.

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Hi, I’d recommend the anti-depressants as the typical side effect is weight gain. I take 30mg of amytriptyline every evening which ensures I get a good nights sleep and also makes me want to eat more.

I find that some dietitians assume that a high sugar calorie diet will help with weight gain. Whilst is can work for many, it didn’t work for me because of the bloating and dumping. Try some simple high calorie food like chips and cheese.

Also, find out if there is a local OPA group as it would be good to meet people that have gone through the eating and other challenges.

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Hi Laverock,

I am approaching two years since my IL when I was 76. I was a fit and active man who loved his garden and helping my daughters out with DIY. After a worry about swallowing the GP put me on Omeprazole which helped. Hower almost a year later when the problem did not resolve i went for an endoscopy. It was not peasant and we learned I had cancer of the lower Oesophagus and stomach. Chemo was hard and resulted in my having DVT in my lower left leg and thus having to inject with heparin for the next 4 months.

I have to say the operation went well and I hoped to go home after 8 days.Unfortunately I had a lower lung collapse and was taken back into ICU for five days. However I was discharged after 15 days,

The first few weeks were very hard. I did want to eat became very tired all the time and hated vomiting which happened a few times. From a Thirteen and a half stone man I was now 10.4 and a scan and gastroscopy was carried out both of which were clear. My GP suggested I was depressed and worrying about food issues and put me on Citalapram for three months. It did the trick and I could eat without fear of vomiting. I picked up a lot of help from this board and my wife was fantastic and so patient with me.

I would say it was at least a year before I was starting to get back on top of things. We have had three holidays in Spain and go again in May. I walk everyday and ride my excercise bike dailey. Above all I am able to look after my garden.

To sum up i will be 79 next and so glad I am able to enjoy life and have a superb family. Yes it is hard to start with but it does get better and above all having a loving supportive wife to encourage you is the most important factor even though at times it is hard in those first few months.

I wish you both well

Andrew

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Thank you for this, Sidesaddle, it's very encouraging, and good to hear of your experience considering you and my husband are of a similar age. Like you he was very active before his treatment , playing golf, bowls and curling, we have a big garden and he enjoyed looking after it with me, now he feels useless and too weak to do the things he used to. Even a walk with his dog tires him out completely , and I hesitate to ask him to carry out even the smallest of DIY jobs. Hopefully his newly prescribed anti-depressant will have the same effect as yours and we will start to see some real progress. We're swithering this week about cancelling a cruise we'd booked to go to the Baltic in June, I thought it would be something to work towards, a goal, but now I'm not sure, he would be 8 months post-op with none of the post chemo or post-op problems you had. I daresay we could cancel nearer the time if he isn't making much progress.

As the wife of an IL patient I'd say it's almost as hard for us, caring and watching our dearest suffering so much and only being able to do so much to help.

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I am 67 and also 4 months post IL op and have lost 20 kilos and cannot it on no matter what I eat My dietitian told me to just hang in there as it could take up to two years for the body to get used to its new circumstances. Eat frequently and try tasty snacks to stimulate apertite. I go for Asian yum Cha dim sims curry puffs and the like, stay away from too much sugar and add some raw salad and bread or noodles This seems to keep my strength up even if I look like an inmate from a concentratipn camp. And yes I have noticed a bit of chemo brain hyperbaric oxygen therapy helped me I believe The MS society in U.K. Has a network of affordable centres for this service

Hope this helps

CJ Mudgee Nsw Aust

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