Hi there, my husband is currently going through chemo and radio and has had 6 treatments of 35 of radio so far. Just yesterday, he noticed that he can't taste things anymore and the texture of his food is putting him off eating.

Can anyone say here what they continued enjoying to eat during treatment? He has been pretty much nibbling on everything in the cupboards and so far only lemon flavoured things are coming up as good. Is there anything else we can try?

Cheers for your help!

I really don't have any specific foods that your husband can try. I feel it's more trial and error on the person going through this. He'll just have to keep experimenting. Definetly make sure he gets enough calories, and fluids as he is going through this. There are alot of supplements out there; boost, ensure, carnation, etc. to get the calories. Like I said what worked for me, might not taste the same for him. Hopefully others will have some input. Wishing you a good day!

Everyone is different and even then my tastes/texture feelings on the same foods changed (and still does) daily. I did find that eggs were about the best thing I could tolerate as long as I could take in solid food. They are soft and also rich in vitamins and calories. Once again though, it's a lot of trial and error. As linroth stated experiment a lot but make sure he gets enough calorie intake daily to maintain weight and energy. It's no fun but he'll get through it.

Best Wishes,

Steve

It varied for me. One week it was special K, then the next it was porridge. I ate eggs, Progresso soups, and of course lots of boost plus/Carnation VHC and nutra 2.0 through the PEG.

Godd luck
Tim

dlmckay,

I didn

Ditto the above. I wasn't able to eat for four months due to the severe mucositis. Make sure he gets enough calories. We found High Protein Boost and the Walmart brand to have the most calories and protein content. I would take three to four in the morning, three for lunch and three for dinner. I didn't always want to pour it in my tube, but had to .

Good luck and stay hydrated.

Tastes and attitudes towards food varies and can change quickly. My son is almost a month post radiation tx and he is slowly recovering his tastes for different things. He tells me that the Carnation VHC with 350 calories per 8 0z was much more tolerable for him than Boost or Ensure which has less calories but it seems you just have to keep trying things. When I found something he liked, I would buy a whole bunch of it which was a mistake because I ended up throwing out a lot of food. Even now when I cook something for him, it's in small portions or something that can be frozen for use later. I really like Mike's "alternative views" on eating i.e. food as exercise, or as medicine. Cool! I might try it on my grandson next time he doesn't want to eat vegetables.

dimckay,

As you can see everybody's tastes varied constantly during Tx and will change almost daily for months after Tx. My taste is not fully recovered nor is my dry mouth, which will come later in his Tx. The dry mouth also affects the taste and the two will go hand in hand affecting his taste for some time to come.

If he is not now, he will soon be on a strickly liquid diet. You did not mention if he has a feeding tube. I didn't and it got pretty rough for about 6 weeks...3 weeks into Tx to 3 weeks after Tx ended. That's about the worse time for everyone getting chemo rad. You also didn't mention the type of rad Tx but I will assume IMRT.

Like others have stressed, it's important to follow your doc's suggestions and those will include DAILY water (mine was 48 ozs) and DAILY calories (mine was minimum 2000). That may not sound like a lot but wait until his taste totally disappears and his throat hurts like hell and his nausea is bad. He quickly needs to get over the bad/no taste issue and prepare for the pain and nausea that will do their best to interrupt his daily water and "food" intake.

His docs will prescribe (assuming you keep them well informed) many pills, etc to combat the pain and nausea. Some may work at first and then not work so you must keep on top of those issues. Some may not work at all but keep trying. Nausea was my biggest problem. I just couldn't seem to find the right combination of pills to deal both with the pain and stop the nausea. As a result I would intentionally short my water and "food" and even lie to my wife so that she wouldn't get upset and more importantly she wouldn't make me drink up. Consequently I wound up in the ER 3 times during my Tx for fluids. One time the ER doc told my wife that my kidneys were 24 hours away from shutting down.

Many of us spent hours in the ER during Tx so that's why we are telling you how important DAILY water and DAILY "food" is to the Tx. I'm not saying it will be easy because it won't be but try to make it a daily goal, not a weekly goal. I would tell myself when I missed a bottle of water or a can of food that I would make it up tomorrow. Well when tomorrow came it was just as bad as yesterday and the shortage never was made up.

I found that getting the most calories per 8 oz can was exteremly important. That meant that I could drink less to reach my daily goal. Carnation Instant Breakfast VHC has 560 nutritionally balance calories in an 8 oz can. That meant I only had to drink 4 of those a day vs 6 to 8 of other products like Ensure or Ensure Plus. You can get it through your pharmacy like Walgreens or CVS or over the internet but it's more expensive there and takes longer to get.

He is in for some rough times in the next 6 weeks or so but by staying on top of his water and food will only help him. He probably won't appreciate your persistance until he is out of the dark tunnel.

Good luck, let him read these posts and encourage him (or you)to ask any questions you think of. This will be a very valuable site to the both of you like it was and still is to all of us.

Hi David, thanks for the reply (and you others too, cheers).

Gosh, you make me feel so sad reading your post - how does anyone stand going through this?

He does have a PEG already and at his worst nausea, he did use it a couple of times to get liquid food and the medication inside him.

We had a better day today with roast turkey and roast vegetables actually tasting like they should, but not the pumpkin - that tasted "wrong". He managed to eat a child's sized portion and felt full. I'm worried about the weight he's losing though. He's already lost 14lb and although he's a big guy at 6'2" and now weighs 210lb, I'm concerned that if he continues to lose weight like this, he's not going to make it!

I don't know what type of radiation he's getting I'm afraid. He has to wear a mask and he lies on a table that spins around for a few seconds and then he's done.

He's currently sipping water from a bottle throughout the day and I've told him he needs to drinks 2qts daily, but he's nowhere near this.

He's not experiencing any pain yet, but the nurse mentioned morphine for the first time today :-(

dimckay,

Please stay on top of his water and calories each day. You will really be doing him the best favor you can for him. In the next 2 weeks things will really start to go downhill for him and will stay that way for probably 5 to 6 more weeks. I really didn't start to loose serious weight until my Tx had ended. That's when you really feel the worst.

The mask is made to confine the head and neck area during the rad so that the rad will only strike the areas targeted by his docs. If it bothers him, tell him to listen to whatever music he likes during rad. I had them turn mine pretty loud so my mind would wonder with the song.

I am adding a post that I sent to a few others recently that asked what to expect from the chem rad. Maybe this will help.

Before I start they say that everyone can react differently to the same Tx but my experience in reading 1000's of posts from fellow patients is that we all have bad side effects but some have it worse than others. Judging by my readings I fared better than most and I think my somewhat nasty disposition helped me when I needed it most. That said......

It was probably the worst concentrated time in my life, both physically and mentally. I think the mental part is at least 50% of the battle. If you think about it, your neck region is the worst place you could be radiated. They tell you that you must (AND YOU MUST) drink at least 48 ozs water and 2000 cals each and every day. Then they burn your throat so you can't swallow or even eventually talk. So then they give you pain meds but the pain meds make you nauseated so they give you nausea meds and even they sometimes make you nauseated. All the while the chemo makes you nauseated. I also opted for no tube and I'm glad I did but it made it sometimes impossible to meet the daily goals. They basically set you up so that you can't win this battle but you will find your own way that works for you. The nausea was my worst enemy and they couldn't find anything that worked for me. I could open up a small drug store with the meds I filled and took one or two pills. At the end I finally had had enough and stopped taking all meds. I swallowed with the pain but at least I stopped the nausea. My nausea got so bad that it was easier to throw up than to breath so even after I stopped all my meds I went weeks fighting a gag reflex every time I swallowed something. Sometimes I literally held my mouth shut after swallowing just so I wouldn't throw up. It was nasty but that's what saved me and got me over the hump, so to speak.

Here's what basically will transpire:

The chemo may make you sick. The first bag I rec'd had no effect on me but the last 2 hit me hard. That may have had something to do with the weeks of rad I had rec'd by the time I got the last 2 bags, I don't know.

The rad will not effect you until around the 3rd week. Your taste will rapidly go away. At first things tasted bitter, then nothing, then I could taste some sweetness but not all. To this day choc tastes bitter.

Your throat will get sore and you will soon be on soft foods and liquids. REMEMBER your goal is to drink water (48ozs for me) and "food" (2000cals for me) each and every day. They will tell you and your caring friends and relatives will tell you all sorts of things to try. I found Carnation Instant Breakfast VHC which has 560 nutritionally balanced cals in a 8 oz can. That meant I only had to swallow 4 cans of the VHC to meet my daily goal. A life saver when your throat burns like hell. Unfortunately I didn't discover the VHC until 2 weeks AFTER my Tx ended but I'm glad I did and I still use it.

You will be given all sorts of meds to combat the pain and nausea. Don't give up if at first they don't work. Good luck on finding the correct combo.

I did not keep up with my daily water and "food" because of the nausea and then I would get dehydrated and then constipated. Guess what the side effects of those are...Nausea. I ended up in the ER 3 times to get IV fluids. Don't think your body will go for days with little or no food and water while being attacked with rad and chemo without shutting down. Your body will shut down if you don't feed and hydrate it so do your very best to keep up. I found that a lot of people visited the ER during Tx.

I lost hearing in the high frequency range due to the cisplatium and I have been told it's probably permanent.

I lost some hair on the back of my head and I won't have to shave below my chin ever again. I don't have fair skin so the outside of my face and neck faired a lot better than most re sunburn.

Your saliva will began to shut down and thick mucus will increase. I went for a few weeks trying to spit out the thick stuff with no thin stuff to help. I would wake up choking on the thick stuff and when I went to spit it out I would start to gag and then get nauseated. The thick stuff will become less of a problem as the dry mouth becomes more of a problem.

You will start to get really weak and may sleep or just feel like lying around. I stopped working all together for about 6 weeks and just laid in bed all day. Really boring time but I just didn't have any energy and I had the pain, nausea, dehydration and constipation, etc. Your strength is zapped as well. Taking a shower was equal to running a marathon. I stopped driving and really became very anti social. I just didn't want to be around anyone except my wife who as my caregiver and business partner I credit for saving my life. There is no way I could have gone through Tx without her. She gave me the caring love and the tough love when I needed it.

I lost 30% of my body weight and I couldn't afford to loose anything. I was very physically fit going into Tx. Nonsmoker, casual drinker and exercise nut. I road my bike 100 miles a week avg 20 mph with bike clubs but the TX still clubbed me over the head.

I felt like I was in a dark tunnel and I didn't come out of that tunnel until the 3rd week AFTER Tx ended. That's when I started to drink 3000 cals a day and started to feel almost human. My strength took several months to come back. My taste is almost tolerable but the dry mouth is still horrendous.

I am just 4 months out and am able to work from 9 to appx 7:30. Not as much as I used to but better than most at my stage. I am mentally pretty much back to normal and my nasty disposition has come back but I'm not as nasty anymore. When you hit the bottom which I did more than a few times I made many promises and I am trying to keep them. This is a humbling experience.

Again, you may have more or less problems with everything I mentioned but overall those are the main side hurdles you will face.

That was written about a month ago. Hope it helps.