Hi Kirk: I'm not very OCF site/forum savvy yet, so I hope you receive this. Sorry I didn't provide enough information. Dan is stage T4A, base of tongue, left side, with 2 nodes involved. He is being treated at the NC Cancer Center at the University of North Carolina in Chapel Hill. He was diagnosed at University of Pittsburgh Medical Center. I don't have the stats right here on the blood work, but I will forward them asap. Thanks again......the people here are wonderful! I'm so glad that I was able to find you! Thanks to all.

Thanks Ed for your kinds words. There is no place I would rather be than with my wonderful husband, I just wish he didn't have this road to travel. He does have the PEG, but was very hesitant to use it. He said (before it was placed) that he dreaded that more than the chemo and rdtx.....I'm sure that thought has changed by now.....but he still isn't big on the idea of using it. I finally convinced him last nite to do ao and he had 2 ensure's and some h2o via the tube. I just wish he didn't hate it so much. Do you think others feel that way too??? especially at first. The way I got him to use it was to tell him that if his weight went to low, the docs would admit him. He is so frustrated and discouraged. I'm going to mention an antidepres. rx to the doc tomorrow when we see him. Thanks again Ed, and I'm sure I'll be back on the forum soon!
Michelle G

Hi Darrell: yes, your dx sounds very much like Dan's. Isn't that incredible that all those docs got his dx wrong? I can not believe it.....and I am very, very angry about it. God only knows what their incompetance has cost us. And to think, all of his symptoms were classic!!! Did you have that problem in getting dx'd?

Dan did have the PEG placed 1-2 weeks ago. Last night was the first time that he was agreeable to using it for a feeding. He had 2 Ensures! He hated the thought of even having one, and is now hating the thought of using it.....I do see however, that moving forward THAT is not going to be an option. I'm glad he had it placed b4 the treatments started.

You mentioned when your treatments ended.....I think this past May. Where you able to work during the treatments? Dan had hoped to, but that is not going to be an option as he is so weak. Well, I have to run and check on him. I'll be back on the forum later.....thanks for everything and will most likely be talking with you again very soon!

Michelle G

Michelle,

Unfortunately, the long drawn out diagnosis of oral cancer is pretty much the norm. Ironically, the five year survival rate is about 90% if caught early but most of us are diagnosed after lymph node involvement. The message that needs to get out is early detection saves lives. Brian Hill, the founder of this site has crusaded for this cause and spent hundreds of thousands of dollars of his money to put all this together. If there ever was a time to request donations, it is with family and friends as you travel this road you and Dan are experiencing right now.

I, too, had a base of tongue primary although it was only about 2.5 cm on the left side with 2 lymph nodes affected on the upper left side of my neck. I had a lump the size of my thumb and I had been to many doctors for about 7 months. I was fortunate because I kept pushing until I could find someone to just remove it. I wish I knew what I know now. I had a plastic surgeon remove the lump and it turned out to be a severely infected lymph node with metastatic SCC. He first told me he thought I had tuberculosis but the path results confirmed cancer.

The PEG is a very rough thing for a lot of us. My teenage boys liked me to show it to their friends the first couple of weeks and our church youth director begged me to show his wife (she freaked... ) but other than that, I kept it pretty low key. There is an option of a device called a MIC Key. It is designed for more active people and only protrudes about an inch or so with a valve in the end so it doesn't leak. That was my biggest issue with mine is when it seeped out on my clothes and I could smell that sour smell all the time. Anyway, you get two tubes that plug into the piece coming out of the skin when you need to use them. One is great for feeding (slightly larger diameter) and the other works well for liquid medicine.

I had a small stomach that was higher than most and from the beginning I always felt full and when I put stuff in there, it usually came back up in short time. As I lost weight, the bulb inside kept tugging and was always a little uncomfortable. We let some water out but it still wasn't what I would call unnoticable.

If nothing else, use the tube for water or pediolyte to keep the electrolytes balanced. This will be one of the most noticable and potentially life-threatening problems other than white and red blood counts. Also, put some Robitussin in the tube every 4-6 hours and the thick goo in the throat will thin a bit. Boost Hi-Protein or Boost Plus has electrolytes, too.

I ended up losing 70 lbs and had to feed intravenously and because my creatinine was a bit low after the first round of Cisplatin, they kept me on IV fluids at the rate of about 3 bags a day for many weeks.

The tube thing may never change. I never got used to it as my new buddy. Hang in there, things will probably get worse before they get better.

Ed

Michelle,
I had a very similar diagnosis as your husband, Stage IV base of tongue with 3 neck nodes. The PEG was my best friend. Once I felt better I would hang it on a nail on the wall by my desk at work and feed while I used the computer. I also was able to play golf and exercise some while wearing it. I am a big proponent of the PEG and would not have been able to make it without the PEG. I got a prescription for the Yankauer machine and kept it by the bed at night and by the easy chair by day. It was a big help.

Please tell your husband that there is light at the end of the tunnel. I feel great and am doing very well now.

Best of luck,
Danny G.

Hi Michelle,

My heart goes out to you and your husband. I know just how you feel, my husband finished radiation treatments on his throat about 2 months ago. My husband did not have a PEG tube, but in hindsight, he probably should have. Keep being encouraging about the tube and let him know how it's going to help him get through everything.

My husband wasn't able to work during treatment either, and he had hoped to, but he is back to work now (about 4 days/week). He actually went back to work about 3 weeks after treatment finished and his job is very demanding physically.

Make sure to take care of yourself too, and realize if he is in a bad mood, it's because he's in pain, it's not about you. My husband was the most easy going guy until he was in radiation, and I wasn't use to that kind of behavior out of him. I had to keep reminding myself he is going through "hell" right now, and he's focusing everything on getting through it. I hope you have friends and family to lean on, reach out to them, they want to help.

You will get so much out of this forum! I encourage you to ask lots of questions. Don't feel stupid, I'm not savy to all this either, and I have gotten more information from these fine folks than the doctors a lot of times. You are not alone Michelle, we are all in this fight together. My husband and I just celebrated our 1 year wedding anniversary, and I told the doctors I want to have at least 30 year's with him! God willing we will.

You take care,

Shelley

Hi Michelle
You are doing GREAT GIRL... Now I've read all the posts above and all the advice is great, BUT the most important thing that You must not lose sight of is LOOKING AFTER YOU. While he goes for treatment, go have a coffee, get your hair fixed, as a care giver and an oral cancer patient, I'm on both sides of the fence, please try to do this, it's very important that you don't crumble...
Sunshine... love and hugs
Helen

Michele, thanks for the information. My cancer was similar to your husbands as I had lymph node involvement and a peg as well. I liked the peg after a while. At first I didn't want it or to use it, but my Oncologist insisted and I have to say that I am glad he did. I lost 25% of my body weight during treatment (50 pounds) with the peg. I can only imagine what would have happened without the peg. So encourage your husband to use it. It got to the point that I couldn't even swallow my own saliva, so the peg was essential. It was especially good for taking meds. All of the pills and vitamins. I just opened them up and emptied the contents or dissolved them in water. Don't try that with metamusal, though, for constipation as it will stop up the tube on the peg pretty well. I did it and it took a day to clear the tube. I got pretty hungry by the time I finally got it cleared. God bless you both.

Michelle,

We got an "Easy Go Vac" aspirator and like Rosie stated it's like the suction machine at your dentists office. It is GREAT and David uses it constantly for that thick mucus. Our doctor sent the RX to the Medical supply company and it was at our door that night. Because the doctor recommended it, it is being paid for by our insurance company. This particular unit is portable and has an adapter to plug into the wall. I recommend it or something similar.
In regards to the PEG, I think that it has been easy to use, easy to clean and conceals well under his clothes.

Prayers to you both.

Brenda ( wife )

Michele: Like everyone else, I am sad that you had to find us but glad you did. My husband has been undergoing treatment since 1/04 and is still in the long process. He is the same, has no interest in the site. However, I visit as often as possible and always, always, get uplifted in my spirits. By getting this, I can go back to him and lift his some, too. I report on what I read on the site, how very many people have successfully beaten back the monster, and report that he is not alone. I know that I can never feel what he is feeling, but know it is important for him to know he is not the only one.

Regarding the PEG tube: it is a wonderful invention! No fun, but can definitely be a life-saver as it was in Rusty's case. Get with your support services for dietary information. We have a good dietician here and I have her home #! She has called me numerous times for updates and was so helpful in finding nutrition to put through that tube! Of course, you wouldn't want to actually "eat" the stuff!

Access every service you can, girl -- you need the support in order to help Dan. You both are on my prayer list, too.

Millie