My hubby started radiation and chemo 12/10. Now, the back of his throat is very raw and bloody and he's just miserable. Would love to year y'all's ideas for how to ease his pain. Thanks!
Welcome to OCF! you have found the right place to get help to guide both you and your husband thru treatments and recovery.
Radiation is not easy! Its also cumulative. As your husband goes thru treatments, it will get progressively more difficult and most patients feel the side effects more and more as time goes on. He is only 2 weeks in and has a long road ahead of him. The very best thing you can do is to focus on what is within your control which is his intake. Every single day he needs to take in at least 2500 calories and 48-64 oz of water. Those numbers are MINIMUMS! If he can take more in like 3000 or even 3500 calories and 64 or 80 oz of water a day it will only help make everything easier.
As far as his sore throat goes, make certain to discus this with the doc. Try having him rinse several times per day with a mixture of 16oz warm water, 1 tsp baking soda and 1 tsp salt. If his throat is painful ask the doc for prescription pain meds and also a prescription for magic mouthwash. Being in pain is detrimental to the patient. Even if he isnt one to take medicine, now is the time to use whatever tools are necessary to get him thru the next few hard weeks. Many pain meds comes in liquid form which is so much easier than trying to swallow a horse pill when his throat is raw. There is also the fentanyl patch which many have used (including myself). This patch is easy as it gets changed every 3 days. Just be sure to read and follow all directions to the letter. A few pointers are to never fold, bend, tear, rip, cut or otherwise damage the patch as it could create an overdose of the medication. Same thing with avoiding long hot showers or baths while on the patch.
Anyone who has offered to help, take them up on it. Even if its just to drive your husband to his treatment one day a week, its a help. There are a million small things that can be done to make it easier for both of you. Dont be afraid to speak up and ask for help. Anyone who asks what they can do, they really want to help so if you need a hand, give them a job.
As a caregiver, you have a tough job. Make sure to take some time for yourself too. Even if its just going out to lunch with a friend so you can take your mind of everything thats going on. Im sure you feel like you are carrying the weight of the world on your shoulders. But now you are among friends, people who understand exactly where you are coming from. We are here to help you as well.
Best wishes with everything!
Flat club soda works very well too if you have no time to make your own rinse. Ask if you can swallow the magic mouthwash. Here at our hospital, we have a formulation that can be swallowed, but that may not be the case with all the mouthwashes. Rinse as often as you can, in this case, diligence pays off.
Thanks for the great info! He's rinsing at least 3x per day, and on a combination of soft foods and Jevity, trying to keep the calories and hydration up, but probably need to nag a bit more.... ;-) also taking pain meds as needed.
Welcome, Pam!
I'm sorry that you have to be here, but I'm glad you came.
I feel for your husband. I got hit with harsh side effects at the end of my first week of treatment.
I agree with the constant rinsing with Christine's ratio. The magic mouthwash most likely can be swallowed. A side note about the magic mouthwash (a.k.a "triple mix") is a combo of benadryl, mylanta, and lidocaine. A lot of insurance companies have stopped covering the mixture since two of the three ingredients can be found over the counter. Compare pricing at different pharmacies if it's not covered. If it turns out that you can purchase the OTC ingredients for less money, ask his docs if they would just write a script for the lidocaine portion, which most likely will be covered. Then you can get directions on how to combine the "triple mix".
The magic mouthwash is not long-lasting, but it may last long enough for him to quickly, but safely, get some fluid, food, and meds into him. Everyone is different. I required a feeding tube relatively early on since I could not take anything by mouth. That is a whole other topic to be discussed only if needed.
Another medication that I was given (that cannot be swallowed) is called "Alcolol". It smells like pine trees and I wondered how it could possibly feel good swishing in my mouth. I told my doctor that I under no circumstances was I going to use it...I can be a little stubborn, lol! When I finally gave in and used it, I was kicking myself for not using it earlier. It does a nice job of cleaning all of the "gunk" out of your mouth, especially when mucositis sets in.
Another tip from on OCF friend was to use a water pick. It did a nice job of keeping my mouth relatively clean when brushing was just too painful. My favorite trick that I do to this day is to use a soft toddler toothbrush. Yes, the one for 4-year-olds. Winne-the-Pooh never hurt anyone! Not only is the head nice and soft, but it's small and can get the back teeth when it's difficult to open your mouth wide.
I hope some of this helps. Yes, life is likely going to be the most challenging over the next few months, but many of us have gotten through it with the help of those like you! Things will get worse before they get better, but he will come out the other side of the woods.
I wish you all the best. Please come back often for help and support...if only to vent! We are here for you! Please remember to take care of yourself, too, as the stress of being a caregiver and watching your love go through something this difficult can take its toll on you. There are websites where you can set up a "helping hands" team and coordinate respite care, rides to treatment, grocery shopping....anything you need. If you are interested in knowing more, feel free to send me a private message (PM) and I can give you some information.
Love in OCF,
Kerri
Hi, Pam.
I made an error in spelling one of the mouth rinses. It's spelled "Alkalol". I thought that it was by prescription only, but I did a google search, and apparently you can get it OTC. Please be sure to get permission from his doctors before using anything, even OTC products.
http://www.alkalolcompany.com/Good luck,
Kerri
Thank y'all SO much! The good news is, we are on the right track. The bad news is, we're pretty much doing everything advised. Last night was awful, he was literally screaming as he was trying to rinse his mouth and clean his teeth, the sores and rawness are so bad.
So, please tell me - how BAD will this get? He's not even to the 1/2 way point yet.
About 5 minutes before he goes to brush his teeth he should use magic mouthwash to numb his mouth. A waterpik is also a big help. Put warm water in with a little non-alcohol mouthwash and use it on its lowest setting. Switch to a baby toothbrush which is smaller and softer than regular ones will help too.
All patients are different and will respond to treatments, medications, and procedures in their own slightly different way. A lucky few sail right thru while the majority of us have struggled. Many have gotten to the point where they wanted to quit. I was one of those patients, I tried but my son refused to stop driving me to rads. Pain management is crucial in getting thru this! Focusing on what you can control (intake) is about all you can do. I wish I had something else to make this easier for you both. OC is a horrible disease with brutal treatments. Take it day by day and count his calories and water intake to make sure he is getting enough.
Best wishes!
If even a child's toothbrush is giving him pain, try wrapping a piece of gauze around his finger and rub his teeth with it. This was recommended by a dentist. Some cleaning is better than no cleaning.
Welcome to OCF. There really are only three things to get right.
HYDRATION - NUTRITION - PAIN MANAGEMENT
He HAS to get enough fluid or he will be in the ER dehydrated. At the very least a quart or more. Try high PH water as the alkaline water feels much softer than regular water.
He HAS to get calories. If he has no PEG then high caloric foods are better as they pack more nutrition in each gulp. Fats and protein have twice the calories than carbohydrates. A cheap ten dollar baby food grinder works great at chopping up foods to make it much easier to swallow. A blender can also grind food so you don't have to chew, just swallow with water.
He HAS to keep pain under control. If he is suffering than you have to up the meds. It may seem scary and frightening about getting addicted but you just have to accept that powerful narcotics are essential for awhile.
Keep reading here and asking plenty of questions. He will get through it but it is no joy ride as you are finding out.
Don