I had radiation & chemo in September-December 2006 (6120 cGy) and brachytherapy (3400 cGy) in May 2008. My cancer has returned and I'm just checking out if anyone has had radiation more than twice. If so, was it successful and were there any problems? Also has anyone had chemo more than once with results?

Richard

Some folks with IMRT radiation have had it twice; I don't know much, but your dose of 34 Gy seems to be about half of the 'usual' 70 Gy, so it might be possible.

Hi Richard. Sorry to hear you are going through all of this again. Jim has had cisplatin, 38 radiation treatments, then Taxol and now we are trying Erbitux. He has mets to lungs and a recurrence in his jaw--and the one on his chin is visable. Anyway, a few weeks ago he had 5 cyberknife radiation treatments in Pittsburgh. The day of his last cyberknife treatment, Dr. Herron looked in his mouth and said the tumor was almost gone. The one on his chin seems to be shrinking. He sleeps all day and only gets up twice to eat (peg tube) and only 1500 calories a day. But he's been through hell, can't talk, can't eat, can't swallow a sip of water. This last round of cyberknife radiation hasn't been too much fun. His mouth is a mess. Poor fellow. Anyway, I'm sure you didn't want to hear all the details but once I start talking about it I can't stop. It's not easy being a caregiver---it breaks my heart. Some days I can handle it and other days all I do is sob. You take care and keep us posted. Claudia

Hello Claudia. I hope the best for your husband. Tell him to hang in there. I know it is tough on you and him. Radiation is tough and really can cause lots of pain. My mouth is usually from sore to very sore but I still am able to do most things with the help of my pain meds and magic mouthwash. My mouth is still too sore for teeth after they pulled them all but I get by. I just cut everything up finely and swallow. I have been through 9 surgeries dealing with this illness but still have a great attitude. This next surgery will be my most intense but I feel I will be able to deal with it in time. I guess the amount of original tongue they can leave will determine my abilities for a long time. I doubt they can leave much but I am hopeful. I have 2 1/2 weeks until my surgery but I am ok and hopeful that it will get rid of this cancer. I still have my peg tube from my last operation in May 2008 so that will be useful. Although I dislike it and hope I can get well enough to get it removed.
Richard

Claudia, you seem like an ideal caregiver, you have sympathy for your patient. I need someone like you in my corner.

I'm glad YOU appreciate me........LOL Thank you. Jim doesn't like me sometimes. LOL

Thanks Richie. Why is it that even though difficult, it appears that most people can swallow to some extent. Jim takes NOTHING mouth. He says that he can't. He used to try, but after the recurrence, he stopped trying completely. I didn't force the issue only because I really don't know all the trauma that is going on in his mouth. I guess it's just one day at a time, or one minute at a time. I may even be down to one second at a time......Claudia

9 surgeries ? and one more on 4/7 ? You have a great spirit for all you've been through. I will be thinking about you that day. Let us know how you make out. I hate this damn disease ! I want to scream ! Can't even imagine how all you folks carry on and most of you with a good attitude. The hard part of being a caregiver is watching your loved one suffer. Take care.........Claudia

Thank you Claudia. It is a horrible disease and I hope they continue to find a way to beat it so less and less people have to suffer. I am a very upbeat person and it's hard to get me down. I wouldn't let them operate this week or next because some friends are visiting and I am going to show them around and hike a little. Then after surgery I have to get better for softball and tennis. That may be wishful thinking but that is my goal. Plus I have to meet a lot of friends in the fall at Lexington for the horse races. It's always good to have a goal. I trained horses for a better part of my life and always dealt with broken bones. It never stopped me at all. I know it is hard to keep on sometimes and stay positive but I am relentless and never give up. I have a great support system and that really helps. I have had great nurses and caregivers and I told them what a blessing they were. All I have been around were very giving and caring and it sure makes dealing with the illness and recovery easier to deal with.

Richard

You have what it takes Ritchie. the Ego that tells you to chase that pot of gold. That is my attitude for this diseae too. Ihave a lot of things on my platter that I will do this year and the next few. I was told ever since I was a kid, that as long as there are things you have to get done that you won't die. LOL I have enough to go to fill a RR boxcar.