My name is Tom and I was diagnosed with SCC on 05/21/07 to the left side of tongue and left lymph node under jaw, stage 4.

I started 40 Tx of radiation and chemo (cysplatin & 5fu) 1st & 4th week on 06/25/07. I finished up my radiation on 08/23/07, so I am a little over 8 weeks out from finishing treatment. I received my treatment at University Hospital in Cleveland at the Ireland Cancer Center.

As a note, my mother passed away from tongue cancer on 11/04/06 at the age of 71. My sister Michelle under the user name mcgee posted to this forum during that period.

All three of my doctors - ENT, Radiation, Chemo - have reported good news during my visits. I am just driving myself crazy waiting on doing the PET scan on 11/20/07 to verify that the treatments got everything.

I had a PEG tube put in on 06/04/07 and it was removed last week on 10/16/07. I believe this made a huge difference in my recovery. My nutritionist told me I needed at least 2,700 calories a day and that is what I did. I wrote my calories down myself on a sheet of paper and used those CARNATION BREAKFAST VHC DRINKS. I poured 6 cans a day (2 at a time) down my PEG tube.

I lost my facial hair except for my mustache and chin. I shave them with electric razor.

The hair on the top of my head thinned out a little, but never all fell out. I believe it has stopped thinning now. The hair on the back of my head around the neck line all fell out from what I am guessing is the exit of the radiation. Has anybody had their's come back?

I think that's it for now. I do have some questions I will be posting in the "after treatment" section.

Tom

I had hair on the back of my head fall out due to radiatin and it grew back finer than baby hair bud. Glad to hear all is well with you.

Billy

The hair at the back of my head has started to come back, and I am just over 3 months post treatment. Some of the facial hair around the sideburns is starting to come back, but the neck is still smooth as silk (in terms of hair). As you can see in my signature, my tumor was base of tongue, plus lymph node. I had a neck dissection prior to radiation and chemo, however.

Please take my advice and do not put too much reliance on the PET scan. If you research that on this forum, you will find that a lot of anxiety and gnashing of teeth has been caused by PET scans, particularly shortly after treatment. Yours is scheduled just barely 3 months post treatment, which is a little further out than mine.

While mine confirmed that the primary tumor was gone (which my Radiation Oncologist and Surgeon had already told me), it showed hot spots in a few neck nodes. This naturally freaked me out, and I had to wait until I saw my surgeon last week to find out that these are probably treatment artifacts and not signficant. I am having a repeat scan in December, just to be sure. However, the anxiety has been awful.

Lots of discussions on this, pro and con, and Brian (founder of this site) has a couple of great posts out there about PET being only a part of the whole picture.

Glad you made it through treatment in good shape, and look forward to your posts here.

Thanks Jeff and Billy for your support. I still find it hard to keep my mind off the first PET scan.

My left lymph node under my jaw bone did shrink a lot from the treatment, but I can still feel it. The RO said it is probably filled with scar tissue. He said he feels there will be no residual cancer left in the nodes based on the dose and number of treatments. I think I also read on this board somewhere that they may never return to their normal size. Does anybody have any experience with this? It just has me wondering and worrying.

Being 9 weeks out from the end of my treatment I feel good. I am back to work, mowing the lawn, and doing things around the house. I just don't have an apetite and have to force myself to eat. It also does not help not having any saliva. I just started taking salagen and see if that will help.

Thanks,
Tom

Tom -- Yep, the appetite is tough to stir back up for awhile, but it does come back, but even then not with the gusto that perhaps you had before. In my case, that is a good thing. I was 236 pounds (I added about 8 pounds intentionally) when I started treatment, and at one point got down to about 203. I am right about 210 now, which is fine. I could lose another 10 - 15, but am not worried about it right now.

The dry mouth is an ongoing battle. Salagen helps me some, but the Biotene products (mouthwash and dry mouth liquid) really help, combined with lots of water. Still, some thick sandwiches, crackers, chips are all tough to swallow without saliva.

Inofar as the lymph node is concerned, a few basic things. First of all, stop pushing on it! That will keep it irritated and make it more likely to shine on PET scan. It (and others) are likely to show some activity on the PET anyway, due to the radiation, inflammation and scar tissue.

I had basically the same treatment you had, except with 1 less rad and a bit more chemo, plus a bilateral neck dissection, and I still had a few nodes show up on PET. I only had 1 node beforehand, and I freaked. Both surgeon and radiation oncologists said not to worry.

What is clear is that my primary tumor on the BOT is gone! Mine was about 2 cm, just barely T2. What was yours?

Your stamina will increase, and things will get better. Remember, that your follow ups are just as much about the physical exams and direct visualization done by your doctors as they are about the PET scan. They have to be considered as a whole.

Good luck!

Thanks, Jeff. You are right, I am pushing on the lymph node every 5 minutes and I have to stop.

I have never gotten the offical diagnoses but I do know the tumor was almost to the midline of the tongue...maybe T2/T3? I will ask the next appointment. It also got down to my left lymph node. After reading a lot of posts, I wonder why my doc did not remove the lymph node before treatment.

Tom

Question about PET scans. I am having my first post Tx PET scan next Tuesday Nov 20th. I am not suppose to eat anything after midnight the night before. Are there any special types of foods I should not eat the day or two before that might cause things to light up?

Being at 12 weeks out of treatment, I have no saliva. I have been using Salagen for the past 2-3 weeks and it has not helped. I am thinking of not using it anymore and waiting for things to heal more. Any advice on if, when, or how long it takes to come back?

Thanks,
Tom

Tom --

My husband has had two PET scans, and I don't recall hearing anything about food. But he was warned not to exercise at all within 24 hours of the scan, as muscles recovering from athletic activity will absorb glucose at a higher rate and thus also can "light up."

-- Leslie

Tom,

Bill's first scans including PET are scheduled for December 10 at Moffitt Cancer Center in Tampa. His instructions say:

FOODS NOT ALLOWED during 24 hour prior period:

Peas, corn, potato, and dry beans, milk, non-dairy products, and gravy. Fruit and fruit juices. All cereals, grains, pastas, and breads. Sugar, honey, jams, gum, and candy. Any foods with more than 5 grams of carbohydrates per serving.

ALLOWED:

All meats, fish, eggs, cheese, tofu, and unsweetened peanut butter. Non-starchy vegetables (green beans, broccoli, spinach, zucchini, and lettuce.) Water and diet soda. Margarine, butter, and oils. Ditto the 5 grams of carbs per serving allowed.

NPO 6 hours before exam.

Hope this helps, Deb

Thanks Leslie and Deb. Your comments are very informative and what I needed to know. I am going to have to do some creative thinking here for my Monday meals.

Thanks,
Tom

I went last Tuesday, Nov 20, for my first post Tx PET scan. I talked to the ENT on the phone today and he said I have an uptake in my tongue and neck. I think he said slight, but I can't remember. He said he might want to get me on the operating table to look around and take some biopsies. We are to talk about it some more at my next appointment on Dec 4.

I was really praying to get through this without any surgery. I am really bothered by this news.

Tom

How I feel for you - the disappointment and the uncertainty of the future, but Hang in there Tom. I am sure all of the things your doctor said are swirling around in your head but try not to get too far ahead. Personally I wouldn't understand what he means by "uptake".

Know that there are many of us here who have been through at least one surgery and can help you through that process if that is what needs to happen. Keep focused on your goal - Health - regardless of what it takes to get there.

Donna

Tom: We're all in this together...one day at a time....
Let us know of your plans following your appt. next week.

You are in our prayers!

Lois & Buzz in NC

I'll be thinking of you. Be sure and ask the ENT about false positives. You had a lot of radiation, and are not that far out from treatment. Have they correlated the hot spots with an anatomical feature via CT?

I will be having my next PET scan on Tuesday, so will keep you in my thoughts.

Well, I met with the ENT on Tuesday and discussed the two uptake spots found on the PET scan. They said the spot on my neck was to small to worry about now. The uptake on the side of my tongue felt a little hard, so he wanted to get me on the operating table and take a biopsy to clarify if it was scar or healing tissue, or residual cancer. I am scheduled to go on Dec 20th. He said there is a 50/50 chance it could be either way, and just wanted to make sure. He didn't seem overly worried that it was cancer, which I guess I could take as a good sign. He did do a really thourogh job of feeling around my neck and tongue. And so I wait again.

Thank you all for your support and please keep me in your prayers.

Tom