I have been lurking on this site for some time. I am not much of a talker. This is a wonderful place to find.
I am a caregiver. My husband was diagnosed in March of 2003 with tonsil cancer. He had 28 treatments of rad. and bracytherapy. Three months later he had a reacorence and a modified neck disection. Befor his next checkup he found a lump on the left side so they did a radical disection and that side because it was so aggressive. We thought that would be the end of it but on may 12 he had to have his soft palet removed.
My question is are ther any ways to overcome the loss so that he can talk better. He has a feeding tube because he lost 80lbs thru all this. He really wants to eat real food again.
Any help anyone can give us would be appriciated so much

Hello and welcome to the site. We are here to help.

You and your husband should talk to a speech pathologist at a major cancer center. I have retainer-like mouth piece that fits in the roof of my mouth that helps me with speaking. He's really not that far out from surgery. This whole process will take lots of time. I know it's hard to be patient, but he must measure time in months rather than in days at this point.

I too would like to eat real food again, and many people do. I am seeing my speech pathologist again in early June for a barium swallow to check out if there are any problems. My food keeps getting stuck, as well as my pills. The feeding tube is a hassle and make me feel so abnormal, but thankfully it has helped me not loose so much weight and helped me heal. Is the reason he can't eat because he is still healing from surgery or is he having trouble swallowing? If swallowing is the problem, a speech pathologist that specializes in swallowing difficulties would be your best resource.

Hang in there and God bless you both.
Lynn

He had a barium swallowing test befor he knew he needed surgery again and they said the muscels in his throat were not working because of all the radiation he has had. He has had the max radiation he can have in that area. We have an appt. with the swallowing center in pittsburgh on tuesday. He had a hard time getting his mouth to heal so he could eat, that is the reason he got the peg tube.
He has had max rad. and four surgeries in less then a year so he is more or less beat up.
He also as no energey and is getting very upset about that. I told him it will just take time, but he is getting more depressed at every check up.
I will tell him what you said,hopefully it will give him hope. We live an hour and a half from his cancer center so he hates to have a daily treatment down there. The trip is hard on him and there is always a long wait. It is an excelent treatment center so we make the trip. Getting the best care is the most important thing. Thank you for your reply

Hi piemetoo

Welcome to the site. This is a bit off-topic from your original question, but I noticed you said you were driving 1 1/2 hours for appointments and that those trips were grueling.

I did the same thing when I underwent radiation treatments in December and January. The last few weeks were pretty rough on me, and my nurses worked with the American Cancer Society to get me hotel rooms for the week so I didn't have to make that drive daily. They (ACS) paid for everything, saving us a lot of headaches. You might want to check into that.

aztarheel,
Thank you so much for the information. We are still learning where to get help. He is just getting weaker with each reocurrence. I believe things will be fine in the end, but getting there is getting to him. Again, thank you for the information.

Piemetoo,

I am so sorry for all you and your husband have had to go through. It sounds like a very rough journey. I do hope you are taking good care of yourself, too, so you can be there for your husband. I just can't imagine what you both have had to endure in such a short period of time. I hope you have friends or relatives that can help relieve you at least temporarily. Do you have a social worker at the treatment center? If not, ask for one and let them know everything you need help with, no matter how big or small you think it is. People are all around you waiting to be asked.

Ed

Piemetoo: Welcome to the site. These folks know more about what is going on than most anybody around. Sorry to hear about your husband, but let him know that it does get better. Keep his spirits up and tell him to not let this disease win. He needs to kick it in the shin.

As far as the energy problem, there is a treatment called Procrit around that works on improving the components of the blood, primarily red and white blood cells. This will improve his energy level if it is due to blood counts that are low due to chemo treatment or other external treatments.

Also, getting the best treatment is what counts the most. I commuted to University of Miami daily and it took 1 to 1.5 hours, depending on traffic. You gotta do what you need to get that best treatment. Just listen to the radio and cruise along.

thank you all for your replies. We saw the Oncolacy dr. today and he is doing another scan and will then set up chemo.
Paul is very down in weight so they are concerned how he will handle it. they my chose to use Iressa first to buy him time to get in better shape for the real chemo. they are talking about some form of a combo drug.
He saw the swallowing center on Monday and they think once he gets his prosthetic device for his soft palate he will get back to swallowing some then.
He has check-up by surgon on Monday and also the dentist to do prothesis. We will be on the road alot this month but it is all worth it, if it helps.
Right now he needs to have one appt. a really good report. We seem to be haveing some kind of reocurrence with each visit. He is getting discouraged at this point so it is hard to keep his spirits up.
we wish we could come to Las Vegs in Sept. but finances are big issue at this point. We are anxious to hear all the raves from it. Again thank you for being there.
Shirley