Thank you everyone again for the great responses. We went away for the weekend to Universal in Orlando. He pushed thru the fatigue he has been experiencing (it gets worse each week) and we had a great time riding rides. He even smiled a few times, something I have not witnessed for a month now. My goal is to keep him busy each weekend. During the week he is exhausted after work. It is becoming harder for him to talk. At the moment it sounds like he is talking with food in his mouth. His surgery is still 17 days away. I just hope he can handle the symptoms till then � pain, fatigue, and increased issues with eating and talking. It amazes me that in the last month how much he has declined from everything was normal to how he is now.


His tumor is getting larger and his pain level is increasing each day. He is having difficulty eating � his tongue is very sensitive and swollen. He bites it when chewing at times. I did make a big pot of chicken soup yesterday filled with a ton of vegetables, he liked it a lot and I have been keeping a cream pie, ice cream or cheesecake at all times in the house. He cannot say no to those so it helps keep his cal intake. He has also been drinking boost each day.

KJB � Thank you for the information. I am sorry to hear about your Dad. I lost my father 2 years ago after a short and very hard fought battle with pancreatic cancer. He was given 6 months at diagnosis and died exactly 6 months later. I think he would have lived longer, but the chemo they had him on was just too much for his body to take. Being back at a cancer center brings back all those old feelings �scared, anxious and sadness. I know my fathers case was hopeless from the start, but I know Steve can overcome this��it is just going to be a hard road ahead.

I did notice something this weekend � no matter how much he brushes his teeth his breath is starting to constantly smell bad. Anyone else notice this issue?

Probably from the blood. I would also wonder if maybe he doesn't have an infection? Plus he may be keeping leftovers in there - if your in pain cleaning is not easy and just makes things hurt more so he's probably not doing a great job. I can't stress this enough protein is important to healing. If your making soup buy some unflavored protein powder and put a scoop in his bowl. It will add calories and vitamins and as I said promote healing. Hugs.

Oh btw salt probably stings (my tongue was really sore too) if you are cooking for him go lightly on the salt and just add it to your food.

Cheryld - Yes, it is bleeding a lot. I was thinking possible infection as well. This is the first time I noticed it. The unflavored protein powder is a good call. I will get some today. I am supposed to go get his new pain rx (stronger) today at Moffitt, I will see if his Dr nurse will see me to ask about the smell. He goes in for his pre-surgery consult on 2/16 - two weeks away.

The odor could be many things like Cheryl said, even the protein drinks or the tumor itself. Do tell the nurse.

This waiting time must be horrible for him. I hope the nurse had some helpful advice to give you about the bad breath.

Thinking of the two of you.

Maureen

[quote]I did notice something this weekend � no matter how much he brushes his teeth his breath is starting to constantly smell bad. Anyone else notice this issue?[/quote]One of the symptoms I had before diagnosis was bad breath that could not be helped, no matter what. Once I was being seen, I was told the tumor was necrotic, basically rotting away and that caused the bad odor.

I also had the bad breath. My tongue had an ulceration that started to really open up in between the time when I first noticed something was wrong, until my glossectomy. By the time I went into surgery, it was as if my tongue was missing a piece the size of, well, imagine laying a piece of paper over a quarter and let 1/4 of that quarter stick out from under the paper. It was quite shocking.

Two more weeks to go. I hope things don't get much worse for him before that time. One thing that helped me somewhat, was rinsing my mouth with the water/salt or water/baking soda solution. OCF recommends both in the same solution, but my doctors didn't say to mix them, so I just cycled between salt or baking soda. Not sure of the merits of each option, so I just did what my doctors told me to do.

Yes, 16 more days to go. He is worried now because he is in pain, and it is being increasingly harder to eat and talk and the waiting is taking a toll on his body and mind. He was diagnosted only 5 weeks ago, and the transformation in his appearance and health is very noticable. His face is sunken in a bit, skin pailer, and circles around his eyes. His energy level is very low ( he usually goes to bed between 7-8), he said the tumor gets bigger everyday. It is hard to chew without biting his tongue. It is amazing how fast this tumor has grown and how fast it has effected his health in so many ways.

Waiting another two weeks is so scary to see what kind of changes to his current condition those weeks will make. I have to trust his Dr in that she said the time till his surgery will not effect her approach to his surgery (my thinking is that based on where the tumor is middle of the tongue and its rate of growth that she is thinking of taking a great deal of it, if not all of it already) and she had great hope of curing him, but it still weighs on me that he has something in his body trying to take over and kill him.

I cannot thank everyone enough for sharing their experience and all the well wishes. I have read them or passed them on to him, and I. I had to give him a cheer up and stop thinking the worst speach last week. I explained to him that from all the post I have read, many people have recovered and went on to live their lives with some adjustments. I told him he has to stay positive and do what is best at the moment for his body - keeping eating (esp high protein foods), get rest (if your body is saying sleep - then sleep), and try to stress less about everything - driving, work, house stuff.

I guess for both of us this diagnosis is a hard one to take. He just thought he had beaten this horrible disease and I still healing from loosing my father two years ago to agressive pancreatic cander. I guess that is life...neither of us thought that this would be where we are two months ago, and all of our future plans are on hold till we beat this, again.

Thank you all again - Danielle

I'm sorry I don't know enough to be certain about it but the waiting time seems wrong in the circumstances here. I've had two big surgeries and both times I've had to wait about as long as you but I wasn't in any great pain and nothing indicated the tumours were getting bigger. I didn't feel unwell. If I had noticed the tumour getting bigger or felt sick, I would have wanted treatment much sooner. I might not have received it any earlier but I think even I, timid as I am, would have gone crying to my GP or would have rung the surgeon's nurse.

Could the pain and growth be ulceration rather than tumour increase?? Could the drop in your partner's health be because of anxiety?

If the tumour is growing fast and he is losing condition significantly couldn't someone do something about this? Could the surgeon or one of her staff see him again? Do the medical people know how sick he is? (I guess they do if he is being prescribed painkillers.)

Your doctor sounds great but I hate to see the two of you having to wait so long. It would be nice to know if the tumour was actually growing or if it was an irritation, ulceration or infection in that area of the tongue.

I wish you both well

Maureen

Maureen,

I think a lot of it has to do with the fact the tongue has ulcerated and is bleeding and because of the location it is probably very hard to heal. When we did see the Dr two weeks ago, she said he would keep experiencing the side effects of the tumor - increased pain, swelling, possible weight loss, and all around being tired. She said it is because the tumor is using cals and energy too. It does not help that he has a very high matabolisim and since he was a child pain meds wear off very fast on him. Even his dentist said they have never used so much novicain on a person till they had time, because it wears off so fast. I have to say some days are better then others. I also think a lot has to do from a combination of anxity/depression and in general being scared. All of that takes a lot of energy from him, and effects from the pain killers. they add to him being so tired, but he needs them.

The Dr. is aware his pain level has gone up, because she wrote him a new stronger pain med just this week. We are scheduled to see her again, and the rest of his surgical team on the 16th for his pre surgical consult and labs.

From what I have read on here it seems like the waiting is par for the course. His surgery requires two surgeons and a plastic surgeon and is a all day surgery. Dr. Otto said it is very hard to fit it in to everyone's schedule and OR room reservation on top. She said if she thought the wait time would put him at risk she would refer him to MD Anderson or another CCC hospital that could get him in early, but she felt this was not the case. Fingers crossed.