Hello. Husband was diagnosed with SCC BT on 8/30/07 and had 3.5 cm tumor removed on left side of neck. Primary tumor was found at base of tongue, not removed. All tests on neck were negative so the cancer discovery was a surprise to say the least. He's non-smoker and social drinker; works in steel mill (could this be the culprit?). Visit to Rush University in Chicago with one of the best Head & Neck Surgeons in Midwest. No other surgeries needed and began IMRT on 10/10/07 for 7 wks. No PEG, no chemo. He is not computer savvy so that's why I'm here. He's able to retire in Jan '08 and thinks he needs to get out of the mills. Me thinks I'll be needing this group to bounce things off of. I'm happy with I've been reading thus far.
Cat

Hi Cat and welcome to OCF.I'm sure you will settle in fine here and find all the support and advice you are going to need in the future.

love liz

Welcome Cat!
There are lots of good people here who will share their experiences and knowledge with you, so bounce away whenever you need to!
There are plenty walking the same road as you, as you'll have discovered from your reading and I'm sure they'll be jumping in soon!

Take care,
Brenda

Liz & Brenda,
Thank you for the warm welcome. Keith is not as proactive in his treatment and care as I believe he should be. I'm gently nudging him to be more informed and ask the questions. He's off work on sick leave; I work as a realtor with a flexible schedule and I'm not always able to be there with him. I'm trying to make sure I meet with the oncologist when it's appointment day. I've found more information over the Internet and on this forum than what has been explained to us so far at the doctor offices. He's feeling just tired at this stage of his rads and I'm trying to prepare him for the worst. If he doesn't get the worst, then he'll feel better!
Thanks again and I'll be talkin' to you more.
Cat

Base of tongue cancers are one of the primary sites that the HPV16 virus likes to start trouble in, so given his non smoking status and this little bit of information, it may lead you to an answer as to how he came to this disease. They almost never do surgery on the base of the tongue, since it causes so many negative long term quality of life issues if they do. But radiation, or rads with concurrent chemo have proven very effective at irradicating it. Watch for any weight loss since he has no peg. 10% plus weight loss is a point at which you should have the doctors reconsidering thier no peg decision. He may be one of the lucky ones that has an easier trip through radiation and continues to take enough nutrients by mouth.... if he isn't, PEG early in the process.

Hi, Cat: Welcome to OCF! I look forward to hearing positive reports during your husband's treatment. Let us know if you run into specific 'layman' questions that we might be able to help you with...

Lois & Buzz in NC

Cat:

Welcome to OCF. This is a great site to learn info and find out right questions to ask doctors.

I am doing Chemo (Cisplatin) and IMRT and started on 10/1 so I am about 12 treatments ahead of your husband. Not sure how I am supposed to feel but doing ok. I have noticed that my energy level has droppeed,food does not taste good and I have some discomfort from Rad. Other than that, doing ok.....have gone jet skiing, been to football games, played golf. I am an optimist by nature but I am not naive and know there will be struggles. I hope I am one of the lucky ones and will have a easy ride but as I tell my wife it does not matter.... you have to do the treatments, fight the battle and win!!! Whatever it takes. Feel free to PM me if I can be of any assistance.

Bill

Hey, Cat: Glad you found us! It's pretty much a "given" that people undergoing radiation will need some questions answered at some point, as will their caregivers. So, as you all progress through this journey, ask away! P.S. retirement from that job sounds like a good idea to me.
p.s. pegs are a good thing if you get into trouble. Amy in the Ozarks

Wow! I feel blessed to a part of this group! You have all encouraged me and given me some wonderful advise. I think the HPV question is a good one and I will follow thru on that. We've already talked about it being a possibility. Bill, I'm encouraged by your positive spirit and desire to never quit! It's awesome! Now that I am empowered today, I will channel that great energy toward my hubby! Thank you all!
Cat

Cat,

Please read my post in the General Board re: "Hubby went to work today!" I don't want to give you false hopes that this will be a cakewalk, but hopefully your hubby will do as well as mine has. We had a couple of bumps in the road (hospitalization, etc.) but so far, we are doing great!

My best to you as a caregiver...you will find strength here! Deb

Thank God for Buzz' PEG...he's down to 167 lbs. today, and that is WITH use of the PEG feedings...I realize it is a PERSONAL decision, but following our research on OCF, Buzz opted for it before beginning radiation, 'just in case'...

Cat

I just wanted to chime in and say that Marvin wasnt going to get a peg to start with. But we are glad he did. It was a big help during the months for rad and recovery. He just had his tube removed about 3 weeks ago.

Barb,
Keith is beginning to feel the affects of the rads. We aren't even half way thru yet. Oncologist didn't recommend a PEG unless he truly needed it. I see you are from Indiana, us too. We are finding lots of head & neck cancer here, especially those working at the steel mills. How is Marvin doing? What was his diagnosis? Thanks so much!
Cat

Cat:

Im nearly 1 month finshed with rad and chemo for hard palate and cheek oral cancer stage 1. For me, the PEG was strongly recommended, I didnt want to get it but I did. By the 1/2 way point of my treatments, I was unable to eat anymore due to the taste and sores in my mouth. Even with the PEG tube, I still lost 45 pounds. I am now trying to start to eat again with yogurt and cottage cheese. If the PEG is an option, take advantage of it. Best of luck.

Cat , I hope your recovery goes well. I think the peg tube decision hinges on just how bad the docs think the tx may be on you. I wasn't even offered one. I did go all thru tx having to swallow my food and water. It was tough especially about 2 weeks from the end of rads to about 3 weeks after tx was over. I lost over 40 pounds but now it is coming back also. Just keep telling yourself you can do this!!

Bill,
My husband is a skinny guy to begin with. I don't think he can lose more than 20 lbs. His tongue and mouth are beginning to get sores and his throat hurts when he swallows. Guess time will tell. They will put a PEG in if he needs one. Just hate to put him through it late in the game. Thanks for sharing.
Cat

Having the peg tube fitted now or in the near future isnt really late in the game cat as he may need it for quite a few weeks after his treatment ends as well as during his radiotherapy.

its a god send to most.

love liz

Liz,
Thanks. He didn't know if he would feel up to the extra surgery for the PEG. But if that is what keeps him afloat, then he will need to do it. He can't talk well right now and I would assume that will continue through past the treatment?
Appreciate all that is being shared with me. He is pacing the floor and passing time. I feel so bad for him.
Cat

Robs voice was very gruff and eventually for a few days he couldnt speak at all,or even drink water.The peg was a life saver then,and it soon passed and he could drink fine after a couple of weeks,but his voice was never right.

It is a hard thing you are doing watching someone you love suffer and not being able to do that much to help,and if you are anything like i was you will feel sad and helpless on occasions.

Just be there for him when he needs you and learn to step back when he doesnt.

good luck and much love liz

Liz,
He just found out today that the sores in his mouth were from the radiation bouncing off his fillings! We weren't told about that happening. He thought it was from dry mouth. I keep pushing him to tell the doctor when something is happening, but he seems to not want to make an issue out of it. This is a prime example of thinking what it is, but not really knowing. He has mouth rinse now that is helping, he's eating good still. Since he can't talk we are playing games; cards, dominos, etc. We'll see if he loses weight and will need a PEG. I keep telling him to be proactive in his care. He's too good of a patient (if you know what I mean).
I am sorry about your sweetheart. It's got to be tough. I appreciate your encouragement.
Cat

Liz, great line. I love it!!

Just be there for him when he needs you and learn to step back when he doesnt.

The care givers creed?

For the caregiver, stepping back is really hard when you know something is not going "quite right". A good [compliant- non verbal] patient can sometimes get in big trouble very quickly. I would encourage the garegiver to be very proavtive during radiation therapy. Amy in the Ozarks

Amy,
I plan to stay VERY involved from this point forward. Thanks.
Cat

CAT, GOOD FOR YOU!and don't forget to keep asking questions! Amy in the Ozarks

Amy in the Ozarks, (I love that)
I think the oncologist will be running the other way when I'm in her office, but I don't care. I've asked some tough questions and she said she would get the answers. Heck, it feels like you don't know what's coming until it falls on you; then you ask why? Shoot, why couldn't we have been more prepared from the get-go? You can knock me down once, but not twice. Now I feel empowered!
Cat Woman

Cat, I was known in John's Oncoligist's office as "the lady with the list of questions". Each time we went to see him, he came in and ask me for my list and then ask John how he was doing. {This was over a 2 yr. period]. My thinking was that if I did not ask, I would not be prepared for the next phase, nor would the Doc know how John was really doing because John "glossed over lots of realities on the home front".[and because I was responsible for a family owned business and children, I needed to be as organized as possible]. There are many caregivers here who will tell you that the more you ask, the better you can deal with it. You both are going to have some things to deal with during radiation and it is better not to be taken by surprise [in my estimation] Hopefully, you all will get through this fairly easily as some do. Just know that you have good support here when you need it. Amy in the Ozarks

Cat when Rob was in the hospital on one occasion,
we were visited by a chaplain doing her rounds.She sat on the end of Robs bed and started asking him questions,which i answered,a habit i got in to over a period of time because he NEVER actually told anyone about how he really was doing,and as tx went on he couldn't because he could barely speak.
She glared at me and looked at Robin and said "does she always speak for you?can't you speak for yourself?"
At which point Robin shook his head,and just about manged to growl "ask her" which she did and boy did i tell her!!
Rob never ever said anything when asked how he felt except "yeh i'm ok"which he very rarely was,and i used to jump straight in and tell the doctors exactly what was happening at home and how he really was.
I never left the hospital until i had the answers to all my questions,and the solution to all the problems he was dealing with,and his "ask her" reply became a standing joke among his team.
Sometimes he was just to ill to cope with Doctors probing, sometimes he was too exhausted from the tx and mostly he just really didnt want to know,but he realised that one of us had to be empowered and was happy to let me deal with all that.
If its what you need to do cat then you go for it.

love liz

Good going, Cat! As a Caregiver to my son, I found that it really helped me to be able to do something - anything, to feel somewhat in control. I had to explain this to my son at times when he was feeling down about everything he could not do and when it was necessary for me to do the things he had always done for himself previously. Everyone needs to feel some control and so, I would try to give him choices so he could still be the "decider", like "Do you want yogurt or a milkshake?" or "Do you want to drive to the hospital or should I?" We developed a sign language: two or three choices would be holding up 2 or 3 fingers. Yes was thunbs up, no - thumbs down, or a shrug of the shoulders, etc. It gets really rough for a while, especially three weeks post end of treatment but it does get better.

Cat,

You better believe that knowledge is POWER! A good doctor will be happy to answer your questions even if it makes him squirm a little. They are very used to patients taking what they say as gospel and no one challenging them.

Bill's RO's nurse ask me if I was a nurse just because I asked questions using medical terms. I told her no, that I had done my research and needed answers...don't most people??? She said no, they don't... they just go with what the doc offers....yikes! I ask her, while this doc was out of the room, if she thought he was put off by someone that asks informed questions...she said no, that he enjoyed the challenge and the brief respite from the normal stuff. I am not so sure that is true but I was glad to hear it!

Cat, you live and learn from all of this and hopefully become stronger and more of an advocate for your hubby! Bill tells me almost daily, how appreciative he is that I have pushed for the best care possible for him. After the first few days of overwhelm when we got this diagnosis, I realized "If it's to be, it's up to me!" Deb

Liz,

OMG, Liz, that is exactly what I am dealing with here. Bill is too stoic...docs will ask him how he is doing...he says "fine." MAKES ME CRAZY! I have tried to explain to him that their questions are not "small talk," that they are assessing his status and need INFO! So, I just jump in and start talking. I sometimes feel their brusseling (sp??) beneath the surface but I don't care....someone needs to answer their queries with in-depth answers so Bill can get the care he needs. Truth be known, it is also a result of my control issues...but in this arena...someone needs to be in control!

Deb

Cat,
I did the PEG two weeks ago today and although its a pain sometimes, I can get nutrition into the body. I'm a big guy 325# 6'4" and they have really picked on me about NOT dropping any weight while in this fight. I've done 3 rounds of Chemo and am on my 22nd radiaton ride with a weekly dose of Erbetux and my poor mouth is just cooked. My fillings and gold crowns are a source of pain for me too... I've tried to be creative, using two of those little cotton rolls the dentists use and a little tape and gause to make myself a pair of inserts that I put in just before my radiation trip. Seems to be helping some, even tho today my tongue is beet red and tender. Hope all goes well for y'all.

Gary,
Keith weights 183 and is 6'3". Can't afford much weight loss there. The rad machine has been down for repairs 2 days now. A bit of a break. He also has CT guided IMRT 35x. Is there anything that will protect the teeth during rad tx? I'll pass on the cotton roll tip.
Thanks,
Cat

Cat,
The cotton rolls are not perfect...but trust me they seem to help.
Tell Keith that doing a PEG isn't that bad....plus if the Dr. prescribes it the insurance co. may pick it all up. I'm feeding 3 times a day, 1 560 cal. for lunch ( at work with a syringe) 2 450 cal. at 7p.m., then I set up my pump with 3 450 cal cans to run while I sleep. which gets me over 2500 Cal a day....I hate it, I'm a real deal foodie, but it keeps me healthy and helps my body fight the good fight.
Best wishes,
Gary

ps.
I use two of the cotton rolls, with a wrap of gauze to hold them together. Then wrap a strip of tape around them and make a little flap on the side about 1/2" or so that I can bite on. Then slip one set inside between my tongue and teeth.
If you've ever had a tooth xray..thing bite wing.