Calling all med professionals or cancer survivors/CGs...

[Alwaysabridesmaidf]

Dirty lurker looking for advice. I think this board has the most activity so I am posting here.
My grandmother had bladder removal surgery in the beginning of June for bladder cancer. She also had 4 rounds of chemo before that. She was released from rehab on Monday. All her labs have been great, she is cancer free, etc. When she was finally able to eat, she kept saying he couldn't taste anything or things had a weird texture. Then when food started tasting good she said she felt gaggy or was gagging when she tried to swallow. She really hasn't eaten a decent meal in a month, maybe 3-5 bites each meal. Now she is home and she is hardly eating anything. We've talked to her dr. Who is pretty concerned. She should be up and moving more, eating normal, almost back to her normal routine. At this point she is saying if it is not better she wil be readmitted for a feeding tube. She has no medical reason to not be eating and she is most likely depressed. My gram was a very active 68 year old who worked full time as a nurse/ home health care provider and ran around like crazy before the chemo and surgery. When she eats she is not actually gagging but just chewing and chewing her food and struggling with swallowing. 
I guess I was wondering if anyone has any experience with this. Are there any tricks to get her mind off of the "act of eating" or help retraining her body to want to eat? I am so sorry if this is long winded. I am just so nervous that she will go into the hospital again and start to give up. Thanks for your help in advance!

[moolarkey]

To me, this is really scary. I went through this with my mom - different problem but she got so she just couldn't/wouldn't eat. We hoped we could get her to eat a few bites each meal and increase the amounts. We tried getting her to drink ensure and/or other similar products. I don't have the answer, we were not successful. I don't know what to tell you but watch this like a hawk and be on top of it - as you are right now. This may actually be the biggest fight of her illness and I'm not kidding you. I wish you all the best but keep on this, you are right to be very concerned.

[Alwaysabridesmaidf]

She is doing well with fluids. They haven't done a swallow study but I will definitely talk to her doc tomorrow about it. She has tons of company all the time and we are trying to make/buy her all her favorite foods. A decent mix of healthy and not so healthy. She was able to drink an ensure tonight with little trouble. Thanks ladies.

[meganew]

My girlfriend is a swallowing therapist (it falls under speech pathology somehow) so I would definitely ask to see one of those immediately. This sounds like exactly what she deals with on a daily basis.

[Deleted]

Depending on the type of chemo, a side effect is change in taste, metallic taste of food, loss of appetite, etc. It takes time for that to go away. In the meantime, she needs to drink nutrient rich shakes, like boost, glucerna, or ensure to make sure that she is getting adequate nutritional needs.

Is she losing weight?

[underwaterrhymes]

My stepfather is a survivor of throat cancer. He did not want a feeding tube and lost 40 pounds before he conceded to get one.

I'm convinced, though, that it ultimately helped save his life.

You don't realize how social eating is until you can't do it anymore. He didn't want to sit at the table with us if he couldn't eat. He was also depressed, which is a common side effect of chemotherapy.

I highly recommend the feeding tube, just to get her to the point where she's not losing weight and is able to get the necessary nutrients, first. And since her throat isn't damaged - it sounds like this is more psychological - you can work on finding foods that work for her.

It took my stepdad a long time (I think 9 or 10 months?) before he was able to eat again. However, the radiation had so damaged his esophagus that he needed to have it stretched, so that affected the length of time.

He started with ice cream and worked his way up from there.

Big hugs to you. I know it's hard.

[Alwaysabridesmaidf]

Thank you so much. She has lost about 35 lbs in the month. We will chat with her dr. again tomorrow to go over some more options but I definitely feel more educated on what we need to talk about. It all just sucks. Wish we could snap our fingers and make things better but we will just have to push her on.

[MamaMaui24]

Ask for a Speech and Language Pathology referral (SLP) typically in an otolaryngology or ear nose throat clinic (ENT).

They can evaluate her difficulty swallowing (dysphasia). Is she coughing or choking when she tries to swallow? Worst - they would say yes feeding tube recommended, it's dangerous for her to eat. Best - nothing's wrong but they will give her some swallowing exercises and maneuvers to help her eat/drink. In between - A feeding tube can be temporary and it can be used to supplement what she's eating by mouth.

Otherwise, it may just be lingering effects from chemo with the taste changes. Dry mouth? That can also make it hard to chew/swallow. If she wears dentures, they may fit differently with the weight loss and effect her eating.

There are also appetite stimulants if needed.

And ask about a registered dietitian (RD) referral. There are certified specialists in oncology nutrition (CSO) that are very well versed in this subject.

(Search tool by zip)

www.oncologynutrition.org/

Definitely keep up the Boost, Ensure, Carnation Breakfast Essentials for now.

I'll PM you more tomorrow from a real computer.

Good luck to your grandmother! She's lucky everyone is concerned and trying to help her.

[MamaMaui24]

Also talk about antidepressants. That could also help!

[Norticprincess]

Chemo screws up the way everything tastes, how long it lasts varies by person.


Going through chemo things that helped me:

dry mouth issue, there are some products on the market to help. I had a biotine gel for a bit. Lemon heads (yes the candy), sour Skittles, and just hard candy to suck on.

things with more flavor. I have to have things spicy to the point that it induces a salivary response to eat things. Sweet things I couldn't handle if I had to chew them, I would, however, down the ensure shakes to get people to leave me alone.

My diet guidelines have a bunch of shake, gravy/sauce options, and purée things so I didn't have to chew as much and add calories. High calories options for everything.

If she is okay with fluids - strawberry ensure made into a shake with strawberry ice cream had the least amount of icky ensure after taste. Hagen das, not the low fat stuff.

Small meals, I was told if I could only eat a few bites at a time just eat what I could and try again in an hour or two, not to force it.

[Alwaysabridesmaidf]

Thank you all so much! I am calling my mom and aunt now to talk about all of this and then we will reach out to her doctor.