Here is what I wrote to another member recently (with a few minor edits) .....
During rads, it will get progressively more difficult to eat as treatments continue. Best thing I can tell you is focus on what you can control... your fathers intake! Chemo and rads for many patients isnt easy. The hardest thing is to keep your intake high enough. Your father should be taking in at least 2500 calories and 48-64 oz of water daily. If he can take in more like 3000 calories it can only help him get thru this easier. This should be much easier to do with the NG tube.
Having trouble with taking in enough fluids? Your doc can also write an open prescription for your father to get extra hydration in the chemo lab. It will instantly perk him right up, helping him to instant feel a little better. Some patients will make it a habit to go a few times a week.
I know the calories and water intake sound excessive and many patients get concerned about gaining weight. Your fathers body is going thru incredible changes right now and burning up calories much faster than normal trying to fight off the cancer, the treatments all while trying to rebuild itself. This is why its so important to keep the intake at least 2500 calories daily, more is even better and will make the next few weeks/months much easier to get past. This will need to continue until at the very least you hit the first year after finishing rads. Also, its very important to keep swallowing water every single day even if his throat or mouth gets really sore. Believe it or not, swallowing muscles can quickly forget how to function. Your father may need a barium swallow test to make sure he is swallowing correctly and safely. Ask his doc about this. Pain must be managed. It is not at all helpful for a patient to suffer in pain, it only causes unneeded stress. Relay everything you wrote to your fathers physician and ask for pain meds. Many come in liquid form or most pills can be crushed and mixed with warm water then put thru the tube. Time release capsules cant ever be dissolved and put thru the tube, never! Ask the doc about the fentanyl patch, its a long lasting way to better manage pain. Just be certain to follow directions exactly with never bending, folding, cutting, tearing or otherwise doing anything that damages the patch and no long hot baths or showers when wearing it.
Trismus (lockjaw) is a problem many of us develop. Its not easy to fix. One important thing to be concerned about is is your father's ability to eat and drink. For trismus, some patients have found success by using a device called a therabyte. Most will start using this during their recovery phase, not while actively in treatment. It takes lots of hard work and dedication! In addition to the therabyte there is another similar device called a dynasplint. There are also good old tongue depressors. I have seen a physical therapist who helped me with these. Take stacks of them and put them on each side of your mouth. Start out by putting about 5 on each side. Then slide one between the tongue depressors on each side until you are stretching your mouth open. When you feel you hit your limit, hold it for about 10 seconds and try to put one more in the stack. Hold it for 30 seconds and then gradually take them out. Repeat at least 3 more times per day. After what your father has already gone thru there could be scar tissue involved which makes it even more difficult to increase his mouth opening. Of course like with anything, check this with your doc prior to starting. Your father may not be a candidate for any of the above tools due to his recent surgery.
How about a waterpik? If your father doesnt have one first ask the doc if its ok. Mix warm water and a little nonalcohol mouth wash together or ask the doc for prescription cholorhexine (not sure of spelling but this is close) instead of the mouthwash. Using a waterpik on its lowest setting will help to clean his mouth where he probably cant get with a toothbrush or floss. Your father should rinse his mouth several times per day with a mixture of 1 cup warm water,1 tsp baking soda and 1 tsp salt. The salt might burn his sensitive mouth so he may need to cut it to 1/2 tsp or omit it. Try to keep some salt in as it helps with healing.
The last week of rads is definitely the hardest and the first 2-3 weeks after finishing unfortunately for most, are even worse as the radiation continues working even after finishing treatments. The recovery phase is usually starts about 3 weeks post rads and for most its a slow go with ups and downs. The sense of taste will take at least a month before slowly returning. Patients can expect things to taste different than they expect for quite some time. Many report improvements in their sense of taste thru about the 2 year post rads mark. The body takes considerable time to bounce back after what your father has been thru. After a few months your father will feel much better, probably not back to his original self but significantly better then he feels now.
The tabs below should help you with your father. Best wishes with everything!
Main OCF site--- Trismus Main OCF stie--- Understanding Oral Cancer PS... Please add a signature as soon as possible. It greatly helps our members to better help you with your questions. Thank you in advance!
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