I am in my third week of treatment with RAD and Chemo and to quote Brian by mouth is trashed. What I would like to see some response on is what has worked for others. It seems to me if this can be stabilized the rest is more managable. Docs now have me on a 75MCG Duragesic patch which does not do the job.Thanks for you thoughts.

Len Stage III base of tongue and right nodes

Liquid vicodin through my tube is all I used for pain management during radiation and I did well with it. Good luck to you.

sorry to hear that your mouth is trashed. i don't know if this is too late but my husband had very little mouth pain and sores. one of his doctors told him to rinse his mouth every 5 minutes. since he was home he could do this. he kept a bucket next to him with many glasses of cold water. he was constantly rinsing. i know at least this helped to keep his mouth more comfortable. wendy

HELLO!

Looking for information on Pain Management...Linda is in terrible pain. Seems like all over her body at times...she is taking just about every drug and lots of it! It's scary! Any advice on pain management for SEVERE PAIN? Any information wiLL be most grateful. Something stronger? Or should she be doing alternative stuff - here we go again with alternative therapy but whatelse can she do for this kinda of pain?.... FEELING HELPLESS AGAIN...NOT KNOWING WHAT TO DO FOR HER...PLEASE HELP...Thanks Flo XOX
p.s....
My friends and family are telling me to take care of myself but, I cannot seem to find the energy or the time to care for me...anyone else in this situation at all...I feel too guilty...I feel that I need to help Linda 24/7 when I'm not helping her I feel lost and very sad. Yes, I know that I would be even more help for her if I take care of myself but, when? and without the guilt...can't seem to find it in me...feel too selfish...if I go off and do stuff for just me, myself and I...and besides it seems that something always happens...I swear! The phone will ring about something happening and then I need to fly up to her house...it's crazy I tell you...what a life we are all leading...I feel that I really could lose it mentally and physically. Maybe I already have...take care...Love Flo xox

With all the resources that doctors have available to them, there is no reason for any patient to suffer daily in extreme pain as they go through this process. This needs to be discussed with her doctor, and appropriate meds added or increased in her treatment. With the current products routinely being used, there is no reason to

Len & Flo,

Brian is right. There is no need to suffer from pain. Heather tried many pain meds and some worked better than others. Len, you need to let your doc know that the Duragesic isn't working. And don't let them scare you about the meds being addictive. They can be, but usually only if you take more than you need. We were told that addiction was only a problem when the meds were taken to get a high. When used solely for pain control, addiction was not an issue. You do have to be careful when going off them. Stopping cold turkey is not the way to go. You need to cut back gradually. Oxycodone/Oxycontin worked well for Heather during radiation.

Flo,

I don't know what meds your sister is on, but it sounds like it should be a constant drip of something, not separate doses. Does she have a PICC line or Mediport/Hickman? Heather had a constant infusion of morpine going through her PICC line. Oxycontin and morphine should be considered if she is not already on them. Whatever she takes, it sounds like the dose definitely needs to be increased.

I know what you mean about taking care of yourself. People told me that all the time, but it is not easy to do. I also felt guilty if I went anywhere or did anything for myself. My one escape was here to the forum. I moved my computer so it was just a few feet from Heather's bed. That way, I could work on it and still keep an eye on Heather. Without this forum, I surely would have gone crazy, because in the last month, I didn't leave the house for anything. Even in the last couple months, I rarely even walked out in the yard and when I did, I took a baby monitor with me so I could hear if Heather needed me. She couldn't talk, but she had a bell that she could ring and I could hear it clearly through the monitor.

Other family members did help, but the weaker Heather got, the more she wanted me there. She was so scared of choking and with her arms mostly paralyzed, she couldn't suction herself. She was totally reliant on her caregivers and she seemed most comfortable with me. I don't think I did a better job than anyone else. I guess it was just a mother/daughter thing.

Anyway, I know how you feel and I echo the sentiment about taking care of yourself, but I know it is almost impossible to do. Do try to at least eat right and get enough sleep though, because if you get sick, you won't be any help to Linda. And, although I resisted the idea of taking an antidepressant, I realize the value of doing so. If you are not taking one, perhaps you should be. Please discuss it with your doctor.

Rainbows & hugs,
Rosie