Comments on Surviving Oral Cancer: Malnutrition meets Radiation

Hey, I've been there and done that... You wont gai...

2008-06-30T14:55:00.000-04:00

Hey, I've been there and done that... You wont gain much weight with the tube, but you shouldn't loose much more either... I waited like you, almost too long to finally ask for a feeding tube. They made it out like you could get one in a minutes notice. But I was informed it would take about 5 more days. I went from 165 lbs to 120 lbs. They also don't tell you that you have to leave the tube in a min. of 6 weeks. But you will start gaining you weight back about 2 months after your treatments. Now the taste buds take much longer, but they do come back (but I had chemo at the same time, and that kills your taste for food).

As for the burnt neck.... its part of it. Just keep the high-dollar creams on it and it will go away in about 2 weeks after your last treatment.

My email is tnipper999@aol.com if you would like to know what to expect from here! I know that everyone has their own story and I don't share my very often but hey, if it can help, I will!!!

Thinking about you, John. I went on baby food myse...

2008-06-25T00:25:00.000-04:00

Thinking about you, John. I went on baby food myself about midway through radiation, then even that was too rough on the mouth. I still take a protein supplement in milk daily (whey, not soy) that I order off of Amazon - at the last of the treatments and when I started healing, that was all I drank for food. I lost some weight, but since my throat was not in the radiation port, I didn't go on the stomach tube. Those things are life-savers - I am glad you have one, so you can get your strength back! The trick will be to get used to food in the mouth again (was for me, and I never had the tube - food without taste was, and still is, something to get used to) - but food equals strength and life. Stay close to your nurses - they are the ones that will really help you cope with the side effects. Face it - they have seen and dealt with it all, so they may have some tricks up their sleeves that will help you out. Mine told me that the two weeks after radiation stopped would be the worst - I think they were right, but since I was at home and didn't have to clean the soothing cream off my face any more for treatment, I didn't care. Know you are being thought of, and that I am sending strength to you. Let me know if I can help with any information for you or your healthcare team. You will be on the other side of this before you know it! Check out my 2006 posts on my blog http://cheekylibrarian.blogspot.com when I was going through radiation, if they will be of any help to you. And if they haven't given you cream like Thermazene (spelling may be incorrect) for the burns, ask for it - that helped me way more than any other cream, even when the burn went to a higher level. Great news that the tumors are shrinking - all this drama will be so worth it!

John--thanks for putting up this post. Sorry to se...

2008-06-24T18:56:00.000-04:00

John--thanks for putting up this post. Sorry to see you looking so thin, but glad to hear that you are starting to bounce back.

I've had radiation several times (well, FIVE times), and the side effects have varied tremendously depending on what part of my body was radiated.

I think the neck is pretty sensitive. Have you checked in with the Cheeky Librarian? I think she had radiation for her cancer, which was in her cheek (obviously).

Here's the link to her blog:

http://cheekylibrarian.blogspot.com/

Take care,

Jeanne
www.assertivepatient.com