Maintaining weight

Hi Jason

Some do manage to maintain weight, others have to put PEG/RIG/NG feeding tubes into operation...no easy answer...I lost 16 kgs over a few weeks...now have a healthy BMI ...taste and appetite now about 90%...14 months after finishing Chemoradio.

Peter

Umvert said:

really keen to hear from anyone who managed to maintain their starting weight or lose very little throughout treatment and how they did it!

Yes me. Used feeding tube as soon as eating was painful. I felt there was little point in struggling to eat with tears pouring down my face and feeling angry with everything. I had nothing to prove. I didn’t need control over my body or the treatment. My team and the RT were fighting the cancer while I was fighting to stay sane. 
Anyway my weight was closely monitored and I would have ended up in hospital had I lost 5%
You need 2500 calories to maintain weight while under treatment, 3000 if you’re a bloke. Thats an awful lot to eat if your mouth is sore. 
If you feel you absolutely have to eat to maintain some sort of control and keep your morale up then just chuck down 7 Fortisips a day or make nut based high calorie high protein smoothies 

Hi Jason, you do need to try not to lose too much weight. If you have a feeding tube, use it when eating becomes too difficult, if you haven't got a tube, you should ask your team about maybe getting an NG tube fitted. You will need nourishment to get you through your treatment and recovery. Always keep your team informed how things are going, they will help.

Ray. 

Hi Jason

I did manage to maintain my weight.  I was very conscious of keeping it stable.  The problem for me was I put on 10kg above my normal weight between diagnosis and mask fitting.  Knowing that I may not be able to eat things I previously loved, so enjoying them whilst I could and Christmas helped with the weight gain.

I was lucky with eating and managed fairly well despite loss of taste right up until the last week, but even then I had to supplement intake with Fortisips to get the calories in.  Two reasons to keep a stable weight - 1. to make sure they don't have to remake your mask due to weight loss in the face and thus inaccurate positioning and 2. you need the calories for the body to fight the effects of the radiation and heal.

Once treatment was finished and I was back to eating "real" food I agreed with my dietitians that I could slowly reduce to my normal weight.

As to tips.  Fortisips or similar are good.  Anything with high calories is good.  Cream cakes, stodgy puddings with custard or cream.  It does not really matter about "healthy eating" at this stage.  You are eating to stay alive.  Also if you have any form of feeding tube use it.  There is no shame in  helping yourself get the best possible outcome in the easiest manner possible.

I lost taste overnight in week 3 and got some back by around week 6 of recovery.  I still have very muted taste but I know what I am eating.

Hi Jason. I never lost weight. While I had the peg tube I had enough Ensures to maintain weight. 4 a day. Once the peg was removed, and I was eating regular meals, there were and still are days when I don’t get my maintenance calories.  That’s when I have a Huel shake which is 400 calories and between 20-30 grams of protein. I’ve also started drinking YFOOD shakes and they are 500 calories and 35 grams of protein. One shake really fills me up. 

I’d give both or either a try 

like Peter, I gained 10 pounds before treatment started so I was pretty relaxed about losing weight .  I still carry those pounds but have decided to keep them 

Good evening Jason, unfortunately, i cannot help reference eating as I'm feeding tube dependent, if you dont have a feeding tube then its best to take more food supplements (shakes) as they will help you to maintain your weight, you have to be careful not to keep losing weight otherwise you may become dehydrated, the only other option is to either blend your food or have a thin soup, Good luck with putting your weight back on and for the rest of your recovery, take care.

                                                                          Chris

I was unusual in that I didn’t need a feeding tube and I actually put on weight during my (standard dose of) chemoradiation. Admittedly it became extremely hard to swallow anything by about Week 5 and for about a month afterwards, but I managed on a diet of mainly Reddibrek, high calorie custards (both made with Fortisips and double cream), shakes (I have a recipe for a 1200 calorie milk shake if you’d like it. Sadly I couldn’t taste it though!) and Fortisips which, unusually for in here, I quite liked - especially the mocha one.  During the hardest time I always took Oxetacaine before eating to numb my throat and Difflam afterwards to soothe it. I was already taking paracetamol, ibuprofen and slow release morphine 24/7 so I was at pretty much at my limit of pain relief. 

However, the high calorie liquidised diet did the trick, so much so that towards the end of treatment they had to loosen my mask as my face was becoming increasingly dimpled like a golf ball after they removed it!

Wishing you all the best, M

Hi Mark,

Would love the recipe for the 1200 calorie shake if possible.

Sure. You’ll need to get some sachets of chocolate Carnation Breakfast Essentials (I bought them from Amazon), some full dairy ice cream, smooth peanut butter and full cream milk. Add a Fortisip and/or double cream for extra calories if you want to. 
Basically whizz up 

• 1 ½ cup Cornish dairy ice cream
• ¾-1 cup whole milk
• ½ cup smooth peanut butter
• 1 sachet chocolate Carnation Breakfast Essentials.
• 1 carton of Fortisip (optional) 

I actually liked the taste, (while I could taste it), but then I have a very eclectic palette!

I guess this comes with a health warning if you have any cardio vascular issues, but the thing about undergoing our treatment is priorities, so just for a few weeks I didn’t worry. The main priority was maintaining weight.

I would add too, and I do tend to bang on about this, that it’s really important to keep as active and as fit as possible. All through my treatment in autumn and winter I did as much exercise as I could, even when I felt like crap. A minimum of a half hour walk each day if not more. It gives you a surprisingly good mental boost too. Am rooting for you!

All the best, M

Umvert said:

Would love the recipe for the 1200 calorie shake if possible.

I'll add a 2000 calorie one to Mark's

1 Fortisip (or Ensure)

3 bananas

1 avocado

4 tablespoons  Honey

3 tablespoons peanut butter

Full fat milk to blend

Add the peanut butter last in small bits. If you put it all in at the beginning it will just stick to the blades of your blender.