I am in the middle of a whirlwind emotion right now. My mom had a partial removal of the tongue and one lymph node out of 26 came back positive for cancer. It was under 1mm. She is now 3 weeks into radiation treatment and is having issues with eating, and a sore mouth. She is 69 yr young, living with Rhuemtoid Arthritis for over 25 years now. She is a fighter? HELP what is the opinion out there!! We are over 100 miles from the hospital, and we are moving to the hope lodge in iowa city tomorrow....

Hi there
3 weeks into radiation it is quite normal for issues to arise that you will find both scary and at times overwhelming.The rheumatoid arthritis is an added problem that will make her life a little more difficult as well.
At this stage of treatment you must firstly make sure that she is getting plenty of fluids and plenty of nutrition.The radiation will probably have burnt her mouth and she will likely have sores and ulcers which can be treated with mouthwash or if neccessary antibiotics,she may be experiencing difficulty with swallowing and diminished salive,and stringy mucous.This can be helped by gargling with salt and soda.Tiredness can be overwhelming during treatment so make sure she gets plenty of rest.
Lastly don't panic just read as much information as you can and be there when she needs you.

good luck

liz

thanks cookey...am just flustered right now. She had a bad time with feeding tube after surgery and i am afraid she will again.
THANKS for the words this site is wonderful~~

Hi, Make sure that she gets plenty of water (48 ounces) a day and try to take in 2500+ cals. per day. I did not have a Peg but forced 6 bottles on ENSURE+ down each day. The next weeks will be tuff but are winable, dont let her quit her treatment as it will only be worse for her!! Semper-Fi Bob

I can get water down her now, but she says everything tastes like metal....is this usual?? We go tomorrow to see dr before treatment, so we will hear. I am afraid that she is lost to much weight even though she says she has plenty to live on. They were very serious about no weight loss, even though with her height she could lose a few. THANKS BOB!!

Welcome to OCF.

Your mom is probably almost to the 1/2 way point of radiation. No matter how difficult it gets do NOT let her quit. This is her one shot at beating this very aggressive form of cancer. Sure its hard to get thru, but it can be done. Unfortunately, things will get worse before they get better for your mom. The last week or so of radiation and about the first 2 after are the worst of this whole thing. Thought I should prepare you for what is to come. Im sure she feels pretty lousy right now, proper nutrition and hydration will play a huge part in how she feels.

Best of luck to you both.

I also welcome you to OCF. I am sorry that you have to be here, but you will not find another place that will give you as much support and as many answers as you will find here.

Please discuss the PEG problems with the doctor also. With the sore mouth and throat from radiation, the PEG is the best way to make sure that your mom gets here nutrition and fluids.

Please do not allow her to quit the radiation. I wanted to quit mine also and I stuck it out. I am very glad that I did. I would not want to have another recurrence. Especially if I knew that I did not do everything that I could to prevent it. It is very hard to get through it, but luckily your mom has you for support to help her.

Patty

Welcome here Iowa. Your mom should get treated as scheduled and you make sure she does. I have problems beside OC and I keep beating them the best I can. By the way I am or was just 73 Feb 21st and had anneurysm sugery in Jan for the 2nd time in the same place, and maybe another on tap for the lower end it that thing. Right now my tongue gets upset when I put any type of food in my mouth. I put it in everyday.

Keep her at it -- What she is going through is normal!

The radiation definitely will change taste because it is cooking the taste buds -- Metallic is one of them -- It's a bit different for each of us, both the initial effects and the recovery effects.

At first the only taste that came back was salt, in fact one of the first things I tried to eat was out with friends and a cup of veggie soup; tasted to me like someone had dumped a whole salt shaker in it! Had the others take a taste and they said it was fine -- Prior to my most recent surgeries, after two years I still wasn't really tasting sweets and taste was basically fading after a just a few bites.

The "metal" taste is normal, to be followed by wallpaper paste taste etc.
Yes, taste is important, but it is better to be around to complain about it. Plus it will improve again.
It is normal that things get miserable. Make sure that she eats enough, if required through the PEG tube.. after all this is why you got it...... no metal taste that way!
As was pointed out it will get worse before it gets better, but it can be done. What helped me was viscous lidocaine which numbs the mouth for a while so you can eat/drink "normally" ... sorry stuff still tastes like crap that way, what stayed around was vanilla.

Unless the RO says that she cannot complete her radiation schedule do NOT let her quit. There is a reason why it takes that long. You absolutely do not want to do this a second time.

Best

M