Vicky, yes many OC patients have gone thru rads w/ chemo and not had a feeding tube. When I was going for my feeding tube consult I was so horrified about the thought of having a plastic tube sticking out of my stomach because I wouldnt be able to eat by mouth that I originally said "NO!, thats not for me". At that point I was so overwhelmed by all the appointments and running all over the place to get everything done before I could begin my treatments. I feel like everything was out of control and I had no say in anything. When asked what I wanted to do, it was my first opportunity to say yes or no....I said no. Ive spent lots of time over the past 11 years reflecting on my no decision and why I changed my mind. That difficult choice in 2007 is similar to going car shopping... a salesman approaches and asks if I need help, most often I will say no even if I really did have specific questions. Sorry!!!! Thats more than enough of my long winded stories!!!
Years ago I started a list of foods that are less spicy and have a smooth texture which usually makes them easier to eat for patients who have a hard time swallowing and/or eating due to a sore mouth. These foods are sort of bland but they have worked for thousands of OCF members over the years.
Ask your fathers doc to write a prescription (with refills!!!) for magic mouthwash (MM). There are many variations of this. I had a mix of malox, lidocain and benedryl. Your father needs to take 1 or 2 teaspoons in his mouth and swish it around as best as he can. After about 60 seconds he should spit it out. The MM should numb his mouth long enough for him to be able to eat without it hurting so much. Its ok to use the MM if his mouth is bothering him other times too, just never swallow the MM.
Milkshakes and smoothies are easier going down than many things. Also try ensure or boost to try taking in the most balanced diet as possible. The following list should help you to find things you can eat easily like canned peaches (these will slide right down) or cream soups. I also enjoyed yoo-hoo and chocolate milk during rads and recovery, plus the extra calories sure didnt hurt. You may find that would help you too.
List of Easy to Eat Foods Here is a recipe for something I used to make and drink when I went thru treatments and recovery in 2007. This shake has anywhere from 1500-2500 calories depending on how its made. The list of easy to eat foods may will you too, they mostly have a smoother texture and are easier to eat than most other foods. I used to like the canned peaches, they would slide right down with minimal effort chewing and swallowing.
You mentioned your father had lost 20 pounds. Weight loss is a clear sign he is not taking in enough which probably makes him feel lousy. It is vitally important your father hit the daily minimums of 2500 calories and 48-64 oz of water every single day. If he was hitting at least 2500 calories daily and he still lost 20 pounds then his daily calories must be increased to 3000 or 3500. I know it sounds like its way too high but considering the patient who is fighting cancer and at the same time trying to heal his body from the rads and chemo damage. Its kinda like how professional athletes must dramatically increase their daily calories when they are training due to burning them off so quickly. Some athletes take in 7000 a day and never gain an ounce. I would drink the chocolate, peanut butter milkshakes daily and some days I'd have 2 or 3 which should have been enough but it wasnt.
An alternative to getting a feeding tube this late in the game would be to get a nasal tube. They are more temporary and do not require surgery to insert them or to remove them. It can be done right in the gastro doctors office and would be a huge help to bring your fathers intake up to at least stop his spiraling weight. If your father had just started rads then I would suggest going ahead with the regular peg tube but he past the half way point (I think?) so the nasal tube would be so much easier for him.
(All measurements are estimates)
Giant High Calorie Choc-Peanut Butter Milkshake
3 or 4 cups chocolate ice cream (regular/full fat type)
2 tablespoons peanut butter (smooth type)
2 tablespoons chocolate syrup
1 or 2 cups whole milk (can substitute half and half to add even more calories)
1 scoop carnation instant breakfast
1 scoop high protein whey powder (check with doc if this is ok)
Blend this extra long to make it very smooth and creamy so it goes down easier. If the shake is too thick, add more milk to thin it down to whatever consistency works best for you.
Centrum has an adult liquid multivitamin out. Ive been taking it daily and its helped me tremendously. Its available in many grocery and drug stores and runs $9-$11. Maybe your father could try it? Make sure you ask his doc first to make certain the multivitamin will not interfere with your treatments
Managing pain is something that must be dealt with! Being in pain makes every single thing so much more difficult for patients. I suggest asking his doc for the fentanyl patch. It takes about 24 hours after putting it on for it to kick in. Fentanyl is the strongest pain medication available. Patche doses start at 12.5 mcg fentanyl up to the 100mcgs strength of the patch. Most patients who use the patches start off with 25 or 50 mcgs and go from there. Im guessing your father needs 50mcgs to help him manage his pain. The patch is for patients who have a long term type of pain. Its not for temporary things like a bad migraine, pulled muscles, etc. This type of medication is a step up and step down one. Your father may not notice much of a difference until he has the patch on for 24 hours. This kind of medication is something the doc must write a prescription for and then take it to the pharmacy. It cant be called in, I guess thats called a controlled substance. After the first 2 days (48 hours) the patch has been put on and your father is not noticing that it helps manage the pain, call his doc. The doc will probably bump up the dose to 50mcgs, or tell you to put on another patch so his total mcgs if starting at 25 would be 50mcgs. Change the patch every 72 hours and always put it in a new place. Everyone forgets (especially me!!!) so mark down the time and date a new patch has been put on. Its easy to keep track of it if you write this down right away so you or your father do not get the days wrong (very easy to do!). Most members who have used the fentanyl patch find its very easy to use and helps to control their pain. I definitely recommend this to anyone who is in substantial pain. Your father still should get other prescription pain meds in case he is having a bad day and needs more than the patch to manage his pain. Thats called breakthru pain and unfortunately this can happen frequently.
Its very important to read all the directions and follow them exactly when using the patch. Never cut, tear, rip, fold, or in any way alter the square or rectangle shape of the patch. Do NOT take long hot baths or showers while using the patch. Exposure to heat could cause the patch to release too much medication which can cause serious medical issues. Immediately report any problems like being dizzy, confused, or overall not feeling well after replacing the patch.
Pay attention to your fathers water intake. If he is struggling to eat he may not be drinking enough either. This can result in quickly becoming dehydrated (along with malnourished from not eating enough) which will make him feel absolutely horrible. I ended up hospitalized a few times for dehydration/malnutrition and it was some of my very worst days. Every single day your father needs at least 48-64 oz of water. Luckily some of that can be found in the food he eats so that should make it a little easier. Its very important on chemo days (plus the day prior to and after) your father drinks extra even though the nurse will give him a bag of extra fluids he still needs to take in more for those 3 chemo days to help flush that poison out of his system. If your father isnt able to meet his daily fluid intake ask his doc to write a prescription for extra hydration. Usually this can easily be done right in the chemo lab after his radiation treatment. Make sure to ask his doc if the prescription can be written saying its for unlimited hydration treatments! This way if its a Saturday, Sunday or holiday your father can still get extra fluids. I know getting extra fluids will immediately perk him right up. Every patient Ive advised to get extra hydration has reported they or their patient has felt so much better after getting a couple bags of fluids. Its definitely worth the time it takes!!!
Im sorry my post is so long!!! I hope I have not overwhelmed you with too many things at once. When I started writing it there just seemed to be a million important things to pass along. Best wishes to both you and your father!!! Being a caregiver is tough, make sure you are taking time for you as well.