Hi everyone, my fiance was recently diagnosed and will begin chemo treatments this Thursday. I have been on this site daily since we first found out and have learned that you all seem so caring and helpful during this trying time for everyone. This is extremely difficult for me because we live in different states and I can't be there daily to assist him with this journey he is about to take. The doctors decided that they would begin with chemo - 5fu, docataxel and Erbitux for three weeks; since having surgery immediately would be too evasive. If you can shed a little light for me, I was wondering what we could expect to happen with the tumors during or after his first round of chemo. Additionally, since he has had to have all of his lower teeth removed and has been in so much pain swallowing since all of this began, can you give me a true idea of how long it will be before he will be able to swallow again without difficulty. Any help you can provide is greatly appreciated.

Hello Ann
I am sorry you are so far away from your Fiance , that must be very hard for you.
Swallowing is going to become a real issue.
Most of our members, not all, have a PEG tube inserted along with a Port.
If he finds he cannot swallow this is, in my opinion. the best option for him.

Is he starting radiation soon?

Try to let us know exactly what type of cancer he has, this will make it easier for folks to advise you along the way.
Take Care
Marica

Thanks Marica. All of this is difficult for me to understand, but I know that he has SCC at the base of his tongue and the cancer has spread to 2 of his lymph nodes on the right side. They are doing the chemo for the first 3 weeks and then possibly surgery if the tumor is reduced in size or an additional round of chemo with radiation daily. I guess we feel so helpless not know what the results will be after the first round of chemo. Additionally, I did mentione to him about the PEG since he is already having difficulty eating and he was curious as to how long others went without eating or if the PEG was really necessary.

If you do a search on here you will find lots of discussions on pegs. Many are in the "Currently In Treatment" and the "Medications, Procedures" area.

Ann, nutition and hydration are extremely important during and after treatment. The option of going without eating does not exist. Your body needs more nutrition because of the trauma being inflicted on it. For those who were able to swallow food, water, and medication, a PEG was not strictly necessary. For others,like me, who were not able to without a great deal of pain, the PEG was a lifesaver, literally. Easy in, easy to live with, easy out. I was absolutely freaked at the idea of getting and having one, but was very glad I did. Again, so as not to begin the debate once more, people who are able to swallow throughout and after treatment, can do without a PEG.

Just another thought about people who are able to swallow can do without a PEG - my husband was able to swallow but, following his first chemo treatment, did not want anything to do with food, so he had a PEG put in so that he could get nutrition that way, as he lost about 8 lbs the week he started chemo.
Michele

MArcia,

Tell him to get the peg tube. The 5fu could destroy his abilbity to swallow becasue of mucusitis. I played golf with mine and it saved my life. He must speak with a nutritionist also, to ensure he gets enough calories to support himself. I took 9 Boosts a day.

Steve Daib

Hi Ann,

Sorry to hear about your fiance. My brother is also going in the same path. He has SCC tongue at stage IV and the doctors did the surgery first (removed 30% of his tongue and 26 lymph nodes from his neck) and now they are doing chemo and radiation. They inseterd a tube in his nose, and all he can get is liquids for 10 days after the surgery. He completed 1 chemo out of 6 and 4 radiations out of 30. Currenly he is doing little ok in terms of eating food and talking.

I hope your fiance will get better soon. Please update his status soon.

praveen

The best option is to get a PEG tube, since he is getting a pretty heavy chemo dose and will prob baly need this to maintain hydration and nutrition.

I should add that none of the three top CCCs (MD Adnerson, Memorial Sloan-Kettering and Johns Hopkins) do base-of-tongue surgery because of long-term or permanent problems with speech and swallowing. Instead they start with concurrent chemoradiation, possibly but not always with an induction phase) and may follow with a neck dissection (to remove lymph nodes) if warrented or recommended after the end of the chemotherapy and radiation. Has your fiance's doctors explained why they are not doing chemoradiation instead of chemo and then surgery? (Or is he getting radiation too -- you mentioned removal of teeth which some places do before radiation, if the teeth are in truly bad shape.)

In any case, yes, a PEG is recommended -- not everyone uses it -- my husband didn't and he had Stage IV tonsil, base-of-tongue and two lymph nodes so got pretty extensive radiation but he was the exception.

Gail

Having a peg has kept my husband alive through 2 surgerys, radiation and chemo still to come. It seems to me wise to get it and then only use it if you have to. It's like having a good spare tire in the trunk of your car, isn't it? Amy