My husband has had a feeding tube from the day we brought him home from the hospital 4/7/08. He still can't even take a sip of water. He was going to a swallowing therapist, but right in the middle of it all, he developed another malignant growth in his mouth. He stopped seeing the therapist and I am so worried that he will never swallow again. I worry that his reflexes or muscles are getting worse. I do thank god for the peg tube. What would we have done without it ? Best of Health to everyone on this board. I pray for each and everyone of you daily.

Hi Slim, I'm new here also, sadly not very new to the disease, tho. It's simply amazing how when one day not that long ago, most of us had not even heard of head and neck cancer, let alone knew anything about it. Thank goodness for the internet, we've been able to learn as we went through it, especially with the help from others that had gone before us. I'm one that believes in the PEG, not that I was given a choice in the matter but I would have probably starved to death without it. About the 3rd week into treatment, I could not stand to eat or drink anything. I even detested the taste of water. I took nothing by mouth for about two months. In doing that, I did have to learn to swallow again but I managed it although things still get stuck if I'm not very careful. The two pieces of advice I have to someone getting a PEG is to ask you to try to drink something every day, no matter how bad it tastes or feels, it'll really help in the long run. Also, after the tube is inserted, there is some pain, especially when lying down. Holding a pillow to your stomach while doing it is alot more painless.
I'm so sorry to hear about your mother. I lost my mom in '94 to gall bladder cancer. Although the grief has eased, I still get upset when I see a mother and daughter out shopping or having luch together. I really miss her. My prayers are with you, Carol

Hi, Slim. There are 2 things I couldn't imagine going through this without. One is my wife, Linda, who went to every appointment, took notes on everything and asked questions that I was too numb to think of. The other is the peg (feeding tube) with which I still lost 50 pounds but would have been in very dire straits without. Also, seriously ask about the chemo option. Together with the radiation it has a much better chance of stopping the spread. Having said that, obviously your doctor will know better than I do but still, ask. Best of luck to you both, stay strong.

Different people are affected differently by a PEG -- Personally, mine have never given any pain after the first couple of days -- Depending on where the inner end of the PEG resides, some may work better lying down that sitting or standing.

Even if one loses the ability to swallow, it is not irretrievably gone, just forgotten.

It seems that everyone reacts to treatments a bit different. I was told before I started treatments about peg tube and other issues I may have. They wanted to think about staying near the hospital for the last few weeks of treatments. I live about 70 miles from Duke. After the 1st week or 2 my ENT, Rad, Chemo drs. were talking to me and prdicted that they were 95 % sure I would not need a peg tube and would not have "serious" issues. They were correct, did not need a peg tube and was able to drive myself to almost all treatments everyday. Later I asked how they knew.....the answer was - based on their years of experience they can tell. They did not know all of the reason but some it is based on "good genes". Some patients and their bodies accept the Chemo, Rads better than others. I still ask why I had an easier time, very quick recovery, etc. No good answer. Bad luck of the draw to get get SCC ? Good luck of the draw to handle treatments well ?

There are people on the board they have had easier time than others but it pays to be prepared for the worse and pray the best happens. This forum was a great help to me in understanding the potential isssues and having a plan and resources in place to address what may happen.

Cheryl - oh my - you are very new at this since his diagnosis was just barely a month ago. I relate to your reaction exactly. I cried and cried while trying to find a place to get answers and information on people with head and neck cancer. Today, as you, I've stopped the crying (husbands diagnosis was 10/28/08) and I've begun an intense search for anything useful to help him fight this that I can find. What was your husbands diagnosis, grade etc.? Mine was T2N2bM1 grade 2 infiltrating moderately differentiated cells, which is very advanced. :-( The chemo has been tough (Taxol and Carboplatin) but he is getting through it one day at a time. The joint pain is pretty intense. Hope to hear from you soon......Brenda S

I am sorry to hear about your husband. Head and neck cancers are so difficult to deal with. Firstly I must say that its a big positive that your husbands cancer was caught early, that greatly affects the prognosis. Second on your question of the feeding tube, my mother was diagnosed with tongue cancer in November - it had been there since May and the hospital missed it - but thats another story! She had a feeding tube fitted before her op to remove and reconstruct her tongue - she is 8 weeks now after the op and due to undergo radiotherapy - she stil cannot swallow more than 3 sips of water an hour- she has not eaten or drank for 8 weeks - the feeding tube is her life line. When this is initially put in it is very painful, but now its fine. The surgeon told us that they saved the hypoglossal nerve which controls swallowing, but she has still been told that she may have to endure tube feeding for the rest of her life - doubtful, but very upsetting, but at least she is still alive! Your husband will be very sore undergoing the radiotherapy, thats why they need the feeding tube, but all should return to normal after the effects of the treatment.

Hi. Just thought I would type a quick update on hubby. We met with the Radiation Oncologist this past Thursday. He said John is considered Stage 3B or Stage 4. John's right neck disection is healing really well. His neck is still stiff and numb but the incision looks really good. Since John is only 55 they want to treat this agressively. He will have 7 weeks chemo - Cisplatin, 7 weeks (35 treatments) IMRT radiation and he strongly suggested the PEG be inserted before treatment. He had a PET scan done on Friday, we have an appointment with the Oncologist tomorrow and an appointment with Interventional Radiology about the feeding tube on Wednesday. This is going to be a tough treatment but I KNOW John will beat this. I asked about recurrance and statistics and that scared me. Having lost my mom a little over a year ago to Pancreatic Cancer, I have a hard time not going to the dark side with my thoughts. I will stay positive and we will beat this. Thanks for listening. John has already lost 9 lbs. in the past 10 days so I know the PEG is probably the best course of action for him. Wanda

Since John is only 55 they want to treat this aggressively.

I don't know what age they wouldn't treat this cancer aggressively as this is pretty standard as far as Tx goes.

How often is he going to get Cisplatin? I had 3 large doses but now the trend (and better) is to break it down into smaller, less side effect laden weekly doses.

David,

She said "7 weeks chemo-Cisplatin" which I take to mean weekly.

Deb