food phobia?

caregiver99

hi all, my girlfriend who just completed the last chemo (cisplatin and 5fu) 3 weeks ago for NPC. She has no oral/throat pain whatsoever and the swallowing test shows she can eat without any problems. However, she has zero appetite and it seems she exhibits symptom of food phobia. when she sees food she gets upset and just not being herself. She is taking half of the high protein drinks via the feeding tube and the other half from mouth but she refuses to eat any solid foods. Is this normal for post rad and chemo treatments? when will she get her appetite back?

sumarah8

I dont have a peg tube, and
I dont have a peg tube, and im only 117 pounds when i started the treatment, my doctor doesnt want to stall a peg tube because he thinks i can do it and i think he's right, i lost 20 pounds during my radiation with concurrent chemo but after that i gained back 12 pounds, im NPC stage 2b, i just started my adjuvant chemo today(ist cycle). During my radiation with chemo, i barely eat and drink and scared that i will throw up, maybe thats how she feels, but i still try to eat because i had no choice(i dont have feeding tube) i think she'll go back to normal soon, its only 3 weeks that she's done with her chemo...

KTeacher

Appetite
I didn't have chemo but I know the not wanting to eat part. Sometimes things just don't taste like we remember, sometimes texture doesn't work. There are medications to help with appetite. I don't want to sound like a broken record to everyone else on the site, but Rebecca Katz has wonderful recipes. She is my hero cancer chef. You can get some recipes online on her website, she also has 2 cookbooks. The Magic Mineral Broth stimulates the appetite as it is simmering and it goes down like silk. My family now uses it as our broth in any recipe. She has an acronym, FASS, Fat, acid, salt, sweet. She has been able to develop recipes that we can eat. Sweet also has recipes on her Superthread.
My husband made me smoothies (still does) greek yogurt has more protein and I use a scoop of powdered protein with the rest of the good stuff (banana,berries, pomagranate juice). Goood luck. Remember, a little at a time. Sometimes something doesn't taste good one day and it's ok the next and vice versa. I remember after my first go around with radiation milk only tasted good on the first sip, yuck after--this time milk has been great!

DrMary

Sooooo been there
In Doug's case, it was a combination of having not eaten for weeks and the justifiable fear of pain. He threw up so much for a while there, that the idea of adding more ammunition must have been horrible to contemplate. Add to that the various imbalances to the sugar level/hunger/satiation system, and not eating makes total sense.

There are still times now (treatment ended almost a year ago) that I see Doug look at the plate of food in front of him and hear him sigh. Sometimes, eating is just so much work.

It helped a bit in the beginning to keep very detailed records. If you know that you have been taking in 500 calories per day by mouth for the last 3 days, it's not so bad to then shoot for 750/day for a few days. It's the whole enchilada that gets folks, I think. Looking at that plate of 500 calories and thinking, "I should be eating 4 of those every day, right now" must be discouraging.

Tasty stuff does help; so does slimy stuff. Doug eats almost anything now, as long as it is not too dry - he can certainly pass for "normal" in public. However, a year ago, a scrambled egg with cheese sauce was a reach for him. It's tough to be patient, but you have to take those baby steps.

MarineE5

Understand your concern
99,

I can understand your concern as a caregiver, my wife was always after me to eat. I used the PEG tube quite a bit and could only take soft foods or fluids for some time. Smell and taste are a big part of eating. What she is taking in now may very well taste like aluminum cans yet. Give her time, I am pretty sure I lost more weight after treatments then I did during treatments because we still "Cook" for a few weeks after the last treatment.

I know that I had a fear of choking and it did happen to me 3 times in the first year. I have learned not to eat fast and chew allot. Sometimes, depending what my wife prepares, it is to much work, so I go for the soft foods.

My Best to Both of You and Everyone Here

NJR

par for the course
I think that what she is doing is probably the norm. It was and is for me. To me at 3 months out, eating is a job not a pleasure and during the time of treatment there was more than one occasion that I ate nothing at all for a week to ten days in a row. Thinking back, I don't believe I ever ate a meal in the hospital or hospice aside from one discharge day when they taught me to use the feeding tube. I believe the chemo killed the appetite, but the radiation just made it next to impossible to eat.

Goalie

DrMary said:

Sooooo been there
In Doug's case, it was a combination of having not eaten for weeks and the justifiable fear of pain. He threw up so much for a while there, that the idea of adding more ammunition must have been horrible to contemplate. Add to that the various imbalances to the sugar level/hunger/satiation system, and not eating makes total sense.

There are still times now (treatment ended almost a year ago) that I see Doug look at the plate of food in front of him and hear him sigh. Sometimes, eating is just so much work.

It helped a bit in the beginning to keep very detailed records. If you know that you have been taking in 500 calories per day by mouth for the last 3 days, it's not so bad to then shoot for 750/day for a few days. It's the whole enchilada that gets folks, I think. Looking at that plate of 500 calories and thinking, "I should be eating 4 of those every day, right now" must be discouraging.

Tasty stuff does help; so does slimy stuff. Doug eats almost anything now, as long as it is not too dry - he can certainly pass for "normal" in public. However, a year ago, a scrambled egg with cheese sauce was a reach for him. It's tough to be patient, but you have to take those baby steps.

she's right, as usual
Doug here. The food aversion, if not outright phobia, was strong. It was just hard to look at food knowing how much had gone the other way and how much it had hurt. But we never had a tube and so it was necessary to consume if not "eat".

For some time it was only liquids or near-liquids (thin soups) and then very slowly easy semi-solids again. I can tell you that for some months there was neither hunger nor appetite even once I was able to more easily eat and taste and enjoy. After a while, at least hunger - the physical sense of the gastric juices being released causing the stomach to want something - came back. It was only some time later that actual appetite - the real desire for food because it was going to taste good - came back. Nowadays I definitely have both hunger and appetite and this is good because my wife is a very good and frequently inventive cook. I only wish I could do it justice.

So, yes, my advice is just to take it easy and don't worry about it. Eat or drink all that you can when you can. Even now I drink the occasional protein milkshake or diet supplement (usually after I play hockey) when eating is inconvenient. Mary's suggestion about little goals was very good. Focusing on getting just 200 calories more today was doable and satisfying. Good luck, Doug

Hal61

Phobia
Hi Caretaker, a phobia is an irrational fear. I didn't eat solid food for months after my treatments (chemo, rads, surgery). If food tastd to you, like it does to her, you might not think it a phobia.

best to both of you, Hal

nwasen

Hal61 said:

Phobia
Hi Caretaker, a phobia is an irrational fear. I didn't eat solid food for months after my treatments (chemo, rads, surgery). If food tastd to you, like it does to her, you might not think it a phobia.

best to both of you, Hal

Food phobia
I was a foodie before cancer. Had the PEG tube after a loss of 30 some pounds. 5' 1" and went from 134 to about 101. I became very attached to my PEG tube as food didn't look good, taste good and I just lost my zest for any food. I was very content to just dump the drink down and not take anything by mouth.
When I knew I should start eating again I choked on a small piece of cooked potato in some cream of potato soup. I called my ENT who got me in for a swallow test and then two months of treatments where I had electrode therapy and two throat stretches. I had a wonderful woman who was my cheerleader and helped me get thru the fear of eating again. My taste buds luckily came back totally and I learned my "new normal" of eating. Smaller bites and chewing slower.
My PEG came out in July after being in for about 9 months.
I eat almost anything. A few things stick but I got over my phobia.
I wish you both much luck and just find the right person to help thru this difficult time.
My outcome was awesome and I owe it all to people helping me get to the right place to get the help I needed...
Nancy

Kyle Gilmore

I am NPC also about 40 days
I am NPC also about 40 days out from rads and chemo. I thhnk its just been the pass 2 weeks that I have been able to eat thru my mouth. I started with chicken noodle soup Went to cereal that i let soak in the milk till soggy to now eating scrambled eggs and veinna sausages..(thats actualy pretty tasty to most hawaiians...lol)

I find myself getting short with melissa when she says oh just try to eat this when I know the texture will rip up my throat and i dont want to explain it once more.Its so hard to explain that its not easy to just start eating again due to the real pain from rads and the anxiety from the whole past 3 months of becoming a cancer patient.

I would suggest some patience and maybe some reminders to get her minimum calories and hydration thru the PEG....Maybe when she feels up to it a buffet style restraunt would help her figure out what goes down the easiest.

Bigfuzzydoug

Chocolate... Chocoooooooolaaaaaaate....
CHOCOLATE! The cure for most every female problem. ;-)

jtl

Food
I have found that I simply do not have the appetite or capacity to eat like I used to. At almost 7 weeks post rads my only physical issue is lack of saliva but food is just not all that interesting. I have started to like Christmas cookies and coffee even though I cannot taste the sugar very well. I actually think eating less will be good for me since I am at a good weight for me and seem to have plenty of energy and stamina. I found that making homemade soups, smoothies and even milk shakes using ice cream and Ensure in a Vitamix or similar type of blender really helped me. Everything from that machine is very smooth and creamy.
John

sweetblood22

Food phobia
I know I was upset and not being myself, to put it mildly. I about wanted to smack my grandmother over toasting a bagel one day, when I was in my second month of not eating. It's so hard to understand food issues, unless you have experienced the hell of treatment. I had a peg tube for 18 months. I didn't eat any food at all by mouth for nine months, but I had serious mouth sores and swallowing issues.

Right now, it's not essential for her to be eating solid foods. As long as she is still swallowing, and she is getting enough nutrition, I'd say, leave it alone. If she isn't getting enough calories, and isn't swallowing, that is another story.

Getting something like a vitamix, ninja, or health master, to make nourishing creamy soups and smoothies, is a great idea. I love my emulsifier. Making a good bone broth, vegetable broth or Rebbeca Katz's Magic Mineral Broth, is great for nutrition and is easy to drink. It took me a very long time to be hungry again. Now, I'm starving all the time and I hate it. If I ate every time I was hungry, I would be doing nothing but eating, because it takes me for ever to eat, and I would be 200lbs.

There is also something like megace, which is perception, that can help to stimulate hunger and gain weight, if she would need something like that.

I am not sure if it's a food phobia, or just what we all go through. Food taste like wall paper paste doused with salt, and the texture was like sand, sawdust, and glass shards. At least for me, anyway. Honestly, 2.5 years out, a lot of my food is pretty saw dust like in my mouth, still. I am just happy I can finally eat and swallow real food, so I try not to complain.

osmotar

Hi
Hello caregiver,

I can understand the not eating. I am 5 treatments away from finishing radiation treatments, for a total of 39, plus 1 weekly infusion of carboplatin. I also had 9 weeks, 1 treatment every 21 days of cisplatin/taxotore/5fu pump, through this I never lost my taste. After about the 3rd week of rads I noticed my taste slowly fading, there are some things I can still taaste jut fine, mostly veggies. Other things have no taste or produce a metalic taste, I supplement this all with boost plus. There are days when I have no appetitie, but what keeps me eating is whether I can taste or not, whether I have an appetite or not is the fact that I went into this journey with the mind set of not wanting a feeding tube. I know that a PEG has been a life saver to al lot of folks here, I discussed this with my rad onco and he said as long as I don't loose 20% of my body weight or didn't loose more that 1-2 lbs per week I would do fine. Yesterday I lost 3 lbs and he was not happy with me, he explained once again food is fuel to help ones body heal and another factor is not to loose muscle mass. He wants me at a minimum every single day to eat 1500 calories, he would like to see me get to 2000. Just because the treatments are over your gf still needs that fuel. If she doesn't want to try food try smoothies, shakes anything that she can stand to drink, tell her to try different things, if they don't taste good, heck spit it out and try something else.

Best wishes

Linda

osmotar

Bigfuzzydoug said:

Chocolate... Chocoooooooolaaaaaaate....
CHOCOLATE! The cure for most every female problem. ;-)

Chocooooolate
Wishing I could have a piece of chooclate...but at this point during treatment all that sweet stuff taste metallic to me