Hello All: this is the first time I've visited this site. I'm very impressed with the interaction I'm seeing, so I'm going to ask for some input.....and I'm not very good at asking people for help.....but HELP!

My wonderful husband was dx'd with base of tongue cancer, T4A in December. He began treatment this week. He will have radiation (43 to complete) and chemo (3 total), no surgery. He saw 5 doctors from Feb 2004 until it was finally dx'd in December when he was 2 days away from brain surgery.....THAT would have been from the previous misdiagnosis. Anyway, we are very close, and I am so frightened. He is just so very weak and tired.....I can't believe how fast that happened. He has been in pain and on narcotics since Feb '04, but the treatments are really difficult. Any info anyone can provide would be helpful.
Thanks,
Michelle

Dear Michelle
You have had a rough road but hopefully his Doc`s have a handle on it now. If his mucous problem is really bad ask your team to find a Yankeur suction machine for him. Keep the room moist , propping him up to sleep might help also.
One of the most important bits of advice I can give concerns the Amofostine infusions, given to prevent damage to the salivary glands. They might make him very sick but, encourage him to suffer them as long as he can . Lack of saliva is a major problem after treatmet, affecting his teeth, gums etc, That was our one big regret, Pete was so sick he just could not handle it. If we had been more aware of the ramifications of stopping the treatment he said he would have suffered thru them.
Keep us informed as to what is going on with both of you. We will help any way we can.
Take care
Marica

Dear Marica:
Thanks so much for the info. I did use the humidifier the last 2 nights. I guess I should have one in the great room also for when he is there during the day??? I haven't heard of the amofostine infusions. I will mention this to the RadOnc where we see him (Tuesday, I think). I'm sorry that Pete was so sick.....this is such a horrible thing for anyone to experience. But I am going to share this with Dan. Where did Pete have his treatment? Did he feel bad after the 1st wk of treatment? It just really hit Dan hard and fast, I couldn't believe it! Any info you can provide would be greatly appreciated. So happy to hear that Pete is doing great now.....I'm sure that it won't be long before I can be reporting that same about Dan.

I will do my best to keep you in the loop with where we are along the path. Thanks again,

Michelle

Dear Marica:
Thanks so much for the info. I did use the humidifier the last 2 nights. I guess I should have one in the great room also for when he is there during the day??? I haven't heard of the amofostine infusions. I will mention this to the RadOnc where we see him (Tuesday, I think). I'm sorry that Pete was so sick.....this is such a horrible thing for anyone to experience. But I am going to share this with Dan. Where did Pete have his treatment? Did he feel bad after the 1st wk of treatment? It just really hit Dan hard and fast, I couldn't believe it! Any info you can provide would be greatly appreciated. So happy to hear that Pete is doing great now.....I'm sure that it won't be long before I can be reporting that same about Dan.

I will do my best to keep you in the loop with where we are along the path. Thanks again,

Michelle