Hi All,

I found this site by doing a Google search on PEG
tube. I was trying to find out about bathing with
this thing. Should I get it wet? Can I take normal
showers or what?

A little about myself. 47 year old married male living in southern California.

Have stage 4 Squamous Cell of the left throat. Large tumor, quite painful. Starting my second round of Chemo next week. Had 1 round three weeks ago then 2 weeks of R and R. After the second round they plan on doing radiation with chemo. So far the tumor is localized to my left next area, no signs of cancer anywhere else. Lots of MRI and CT, all negative. The doc says my blood tests all look perfect. So far all info is very positive.

Just doing everything they tell me to do, mostly eat drink eat drink.

Good to know you guys are out there. I'll pray for all of you, God Bless.

Love Ya All,
FVDale

FVDale, Welcome. Sorry you had to find us, but as long as you need to know, I'm glad you did. Yes, following the doctor's advice is a good thing. Are you being treated in a cancer center? If not, I suggest you go to the nearest center as they have lots of experience that regular doctors don't necessarily have. Do you know the primary site of the cancer? That can have a major impact on the treatment regimen. You have a pretty difficult road ahead of you as the rad treatments can be hard to take. How many treatments are the doctors planning on giving you? The norm is about 35 (5 per week, 7 weeks). It is often done in concert with chemo. The chemo is generally not a big deal. Of course, we all react differently, so there is no telling for sure until you do it yourself. Would suggest you fatten up as weight loss during this treatment is common. I lost 25% of my body weight and that is about average. So eat your head off as you will probably need it. Have you had a PET scan? This looks for other cancer hot spots. While it is not perfect, it is another data point. Do you have a care giver? ie: Wife, family member, girl friend? It is a lot easier to get through the treatments with a care giver. Look through this site as a lot of valuable info is available. Again, welcome, and I will add you to my prayer list.

My Primary site was left tonsil, but it appears to be inactive. Only discovered during general anesthesia inspection of 4 special areas of head. All previous efforts to locate primary had failed. Endoscopic examination also negative. Biopsy taken during inspection revealed primary source in left tonsil. My current treatment schedule is:
Week 1 - Aggressive Cisplatin / 5FU
Week 2 - Recovery
Week 3 - Recovery
Week 4 - Aggressive Cisplatin / 5FU
Week 5 - Recovery
Week 6 - Recovery
Week 7 - Start Radiation and Unknown Chemo

Your treatment plan doesn't make sense to me (but I am not a doctor). Cisplatin is an adjunct to radiation therapy and is usually started concurrently with the first radiation treatment. It is then usually given every third week of treatment. I don't believe that it has much benefit without radiation.

By "get it wet" what do you mean? If it is a surgical incision I would get clearance from the doctor first. If the skin is intact I don't see why showers would be a problem.

I don't understand what "the left next area" means either. If I am reading you correctly you originally had an occult tumor but now they feel your left tonsil is the primary - then where is the secondary specifically? What is your TMN? I'm not trying to pry, but we could help you more with a little more specific information. It is really vital that good notes are taken at all of your appointments. Many critical decisions will hinge on them. My wife faithfully transcribed every word the doctor said so I could analyze it later when I wasn't quite so freaked out.

Stage IV is very serious business, as Kirk suggested, I would accept nothing less than a comprehensive cancer center. At the very least I would be getting a second opinion from one.

We are lucky to be in California - there are many to choose from here.

Here is a list of them: http://cis.nci.nih.gov/fact/1_2.htm

Gary, I think "left next area" is left NECK area...

Dale,

Welcome and glad you found us. I would not worry about the PEG tube getting wet. Some doctors like to stitch them in and you should wait until the stitches or toggles are gone but otherwise just keep it clean. After a bath or shower, there will be a lot of goo around it and you should clean it with a little peroxide and a qtip. It should be flushed daily.

I am surprised at your treatment schedule, too. Usually, the radiation is started at the beginning of chemo when both are used, especially with Cisplatin. Also, I am not sure how the doctors could determine the cancer is inactive.

I am hoping your doctors have significant experience with this type of cancer.

Ed