Cindy,
I know what you mean about "listening to the doctors" then finding out for yourself. I worked for a company that built LINACS and saw plenty of patients and I was still unprepared for what was to come. This disease, more than anything, brings home the concept of everything chaning in the blink of an eye.

On a positive note, maybe his reactions are also evidence that he is responding well to treatment.

I was pretty much disabled for over a year. Some people go through the whole deal and continue to work, but U think they are the minority.

He'll have to experiment with foods to see what tastes good. He may want to strongly consider a PEG as the radiation effects get more intense.
The American Cancer Society has all kinds of publication on line for tips on dealing with these kinds of issues. http://www.cancer.org/docroot/home/index.asp

Cindy, welcome to the site. Sorry you had to find us. Like Harry, I had cisplatin with my radiation treatments as well. I was one of the lucky ones, though, as they found the right anti-nausia medicine the second time around. I had virtually no problems with nausia during all 3 treatments at 21 day intervals. Like I say, one of the lucky ones.

I had the peg and stongly recommend them. I lost 25% of my body weight (50 pounds) even with the peg, so I strongly recommend it. This disease is tough enough without having to get through it undernourished. I got it after the first three weeks of treatment and kept it for 4 months after rad/chemo. It was a life saver. It is also good for taking the necessary water. Having sufficient water goes a long way to staying away from fever. I never had a fever at all during treatment, partially because I drank a ton of water through the peg. Also, I didn't like those nutritional drinks, so I added instant breakfast to them (which I also don't like) and put them through the peg. I was able to get upwards of 1800 calories per day that way.

When taking pain meds, be careful of constipation. It is a killer. By far the worst part of the side effects of treatment. I used the peg to take two glasses of prune juice per day to get it under control, then took one small glass (4oz.) per day thereafter. So be careful of pain meds.

I was also blessed to be able to work through most of the treatments. However, a lot of folks were not. It depends on the individual and should not be worried about. Go with the flow. If Harry can work, fine, if not, let him concentrate on getting through this. I'm sure you are.

As his caregiver, you must take care of yourself. If you don't, you won't be there for him when he needs you the most. I'm sure he will understand that, so do what you need to for yourself to get the rest and support you need to carry on. My saintly wife was by my side every minute and I could not have made it without her loving patience and care.

Are you at a major comprehensive cancer center? If not, would suggest you get in contact with one as they will provide the best regimen to attack this disease. I was at a center and am in remission at this point even with a stage IV cancer. The teams at the centers are very experienced with this disease and can provide the best overall treatment.

Will pray for all of you that the treatment side effects will ease and Harry can begin tolerating the treatments better. Hang in there, it does end and with help from the Lord, friends, relatives and medical team members, Harry will get to the point of looking back at this experience as something he got through for his family and to allow him to be there for you all.

Cindy, Amifostine is an injection given in conjuction with Radiation therapy, its purpose being to help protect the salivary glands. As I mentioned this was so toxic to Pete`s body that we had to discontinue but others have had great success with it .
The suppositories were a mixture of compazine and something else. Can Anyone help me with this ..memory has gone. It seemed to take the edge off more that any other medication but, everyone reacts differently, we went thru every pain and nausea medication out there.
Keep In touch and let us know how things are progressing , we care .
Marica

Kirk, Thanks so much for the information. It helps if every now and then you actually understand something within this madness.
We live in Houston, Texas. And, yes, he is at what I would consider to be one of the premier centers in the country. You know it is funny that we have moaned and groaned about leaving here for years. We want to live in Florida, closer to my mom. But when he was diagnosed I was never more glad to have procrastinated on something as I was about leaving here.

His rad Dr. is the Cheif of Radiology for Baylor and his chemo Dr. is the Cheif of hemotology and oncology for Baylor. His ENT has trained more than half of the docs at MD Anderson so we feel exceptionally confident in our medical team.

We also discovered last week that a very good friend of my step-daughter's is a resident under the chemo Dr. My husband was very surprised when she walked in the door. He has known her since she and his daughter were undergrads at UT.

Thank you so much for your input it is very very helpful.

Marcia, Thanks for the answers. I will put them to great use. I promise that I will be a regular visitor and contributor when I can. This is one of those places you never wanted to know existed, are darn glad is here, and that you cannot stay away from once you get here.

Cindy

Cindy,
Hello. I am also from Houston and had a diagnosis very similar to your husband's, Stage IV, base of tongue and 3 neck nodes. My treatment was also very similar to your husband's. I was 54 at diagnosis and was also a non-smoker, non-drinker who should not have gotten throat cancer. It affects everyone differently, but in my case I did not feel anger. Instead of asking, "why me?" I asked, "why not me?", but everyone reacts in his own way.

What I would like you and your husband to know is that there is life after throat cancer. The treatments definitely took their toll on me. Radiation is no small thing. However, as time passed, I began to get better and to start living my life again. I now work, work out at the gym, play golf, and even got married this past Christmas. Life is good. More importantly, I am here for my children. Since my diagnosis I have watched my oldest graduate high school and she is now a sophmore at UT Austin. This weekend I had the pleasure of watching my son who is a high school sophmore play in a high school golf tournament, and I am here to be driven crazy by my 17 year old daughter who is grounded for drinking with her high school friends.

Please feel free to contact me. I am a volunteer at Cancare (located in Houston) which uses cancer survivors to mentor and give support to cancer patients with similar diagnoses.I would be happy to talk to you or your husband on the phone or to visit him if he chooses. My email is [email protected].

It is tough, but your husband has a lot to live for and he can get through this with a little patience. There isn't really an alternative,is there?

Take care,
Danny G.