Janie,

If nutrition is a problem let me tell you about Scandi-Shakes. 600 calories per 8 oz. of milk. Choc. Strawberry or Vanilla. With the vanilla the flavors are endless. They don't taste mediciny at all. You can buy them online or by phone 1-800-472-2634.I mix them with ice cream for my husband and that adds about 200 more calories. They taste good and my hubby says they sooth the tumor area. He also lived on them when going thru chemo and rad.

Bette

Janie,

i had a bit more than 50% of my tongue removed (i had a large tumor).

It had been really hard for me to eat, and I lost 30 pounds in less than 2 months, as I was reduced to a liquid diet. Since the surgery I was maintaining weight, and just managed to gain 2 pounds. I have chemo ahead, so the 2 pound gain was a major success (I really can't believe I am exciting about a weight gain!).

I started using skim milk powder on everything. It adds protein which is what we are sorely lacking. It has no flavor, so you can even add it to drinks. I personally hate the taste of boost and ensure, so this was very helpful for me.

Good luck!

Thank you Bette and Tina. I will definitely look into both the Scandi-shakes and the skim milk powder. Right now because she is so tired of the clear Ensure and hates the milky ones even more, she is working hard on getting real but mushy food down. This is good. I wish I could MAKE her do everything I read about...I try to tread lightly though, because I know she needs me so I don't want to argue. She is not an 'online' person and doesn't really...I don't know...get it, that this is huge info and you all are the best guides.

Take care of yourself, Tina...you and Reggie are both in my prayers.
Janie

Janie, what several members have found helpful was to print out things you want your patient to see. Then you can 'accidentally' leave them laying where they will be read. Pay close attention to exactly how they are positioned and then you will notice if they have been moved. This has been used to get important info to some stubborn patients who dont use the forum. Give it a try. Cant hurt.

Janie - Christine's suggestion above really works! I did this for my son and after some time of waiting until he fell asleep and just leaving the OCF info by his bed, I began to notice a more positive attitude in him and better cooperation. I screened the info and only gave him positive things that applied to him and his recovery. In our case, I thought that maybe accepting suggestions from someone other than his mother (a more objective person) might work better so he wouldn't feel his mother was telling him what to do.

I agree. While I love my parents to death, I always saw their comments as overly positive or skewed. For example my dad would say my voice sounded great and totally understandable but I didn't believe it until I heard it from others.

I am a pretty positive and motivated person, but I look to this board for the "straight goods" as people do not pull punches here. If I'm being a twit, they'll tell me.

Plus there is nothing like info from people who have been there!

Great news that she's on somewhat solid food, it should do a lot for her energy levels. Keep up the encouragement and good work!

The "straight goods" and telling it like it is a good thing. The experiences people have may not always turn out the same for others, but it always helps to be prepared for what I call "Unforeseen Circumstances" (UC's). That way, if the UC does appear, you can better handle it and know that others have been through it and survived. As a caregiver, I usually held off on including the worrisome possibilities until or if it did happen and then I could tell my son he could handle it because others just like him did and survived.

She will definitely want the peg tube if she is having the surgery! Everyone is different, but if they are going to be removing that much, and then doing chemo and radiation, do whatever is in your power to have her get that tube in, the sooner the better.
I had the right half of my tongue removed, and reconstructed. Then had radiation. They didn't put my peg tube in until I only had 2 weeks of radiation left, and trust me, that isn't the best way to go. It is better for them to put it in before surgery and treatment start, so that they know it works for her as well. I found mine wasn't working properly because of a bacteria I got when they put it in. And it would have been nice to have it put in before surgery, so we knew it worked. I lost 65 lbs total. 20 from surgery, and 45 from radiation, because I couldn't eat or drink anything, and then my tube wasn't working. So I then had to use a PICC line to get nourishment.
It's crazy that they are still saying surgery first, as most of the people I have known that had BOT cancer, even with lymph node involvement, just had radiation and chemo, but docs know best I guess. I would just maybe make sure that is the best thing for her. If they have another doctor that can give you a second opinion, maybe go for that. Definitely don't want to make her go through surgery if she truly doesn't need it!
You are both in my thoughts! Tell her to stay strong and fight hard, and seriously consider letting them put the peg in before treatment starts! It will be her life line. Just because she has it in, doesn't mean she has to use it, it just means it's their just a precautionary! She can still eat and drink with that in.

Thank you all for the helpful suggestions. I did what you said, Christine and left your replies out (a little edited LOL, so that she didn't see that you said to do this.) I think this went a long way toward her deciding to have the Peg tube put in while she was put out for her panendoscopy. They did this on Thursday the 15th.

She has a really good surgeon...I researched him. He was in Boston magazine as one of the top 50 ENT-Otolaryngologists in the U.S. 2 years ago and this year in U.S. News Report "out of 1,071 top ENT-otolaryngologists listed, 285 have been named to a highly selective list of America's Top Doctors (ATD) by achieving national recognition for outstanding work.".

Sadly, this surgeon didn't find what he thought he would though. I think I mentioned it was being done again because he believed it was smaller than her ENT oncologist found and he wanted to investigate it himself. He found that it was even worse. The BOT tumor goes right through from top to under tongue and more importantly, deep inside it spreads and it is over the midline. (I'm sorry, I don't know all the technical terms...he pretty much laid it out in laymans and this was my understanding of it.) He says that once they add the margins it would mean removing the complete tongue as well as the voicebox. He says if I asked what he would do if he were in her circumstances, he would try chemo and radiation and hope for the best...LOL he does not sugar coat at all. He then said that most likely in the end it will be the same outcome but with C&R there is at least a chance with therapy to have some small use of it. He said that when the radiation destroys the cancer, because of the size and placement, it will most likely destroy the tongue. We met with the radiation oncologist and she agrees. She also agrees it may not work. Personally, I got the feeling she wanted to go further and say to us that we may not want to bother. Don't get me wrong, she didn't say that, but that's just what I felt. Do you know if they DO ever say that? Everyone is very nice and says to be positive. There's been a lot of "quality of life"s being tossed around by everyone, but no one has said NOT to do anything. She wants to be very agressive and has scheduled 7 weeks of radiation for her, 5 days a week along with a weekly chemo. She starts on 12/6. A couple of weeks to get used to the tube and to try and fatten up. More than once, talk about "surviving the treatment" has come up. Anyway on Friday and Monday we met with everyone you could think of...chemo, radiation, her surgeon again to reiterate what he'd said after the panendoscopy and exploratory, a pathologist for speech and eating to get a baseline, a nutritionist. It's been a whirlwind. So a couple of weeks and then she'll start.

Does anyone know of anyone with a really bad prognosis who may have survived? For at least a bit? It's okay if you don't. that's a bad question. If I can will her through it, I will do my best. She's being so brave ... we have lots of macabre tongue jokes 'cause she says she's not a 'Lifetime Channel movie of the week' type.
Anyway, I'd better try to get some sleep. Please keep my sister, Marie in your thoughts and prayers.
Janie

Hi Janie,

It looks like that they are contemplating whether to do a total glossectomy which means removing the entire tongue or to conduct radiotherapy & chemotherapy in hopes to shrink the tumour first in a effort to avoid the total glossectomy.

There are several members here who have gone through a similar process as to the procedure I have stated above and would highly recommend you type this into the search box provided in this forum to get better insight.

Do NOT get into a pattern of over analysing things in your head - your primary job as caregiver is to distinguish between fact & fiction and to ensure that your loved one goes through this battle equipped with the best possible weapons and knowledge at hand.

Hope that helps.