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

Hi Ms Ann,

if you go on "To Peg or not PEG" in current treatment you will have lots of advices with the insertion of the PEG. I was the one who actually asked the question and people have been candidly and honestly shared their experience.

My husband David who has chosen not to have a PEG tube is at his 4th week of RT and is doing well without the PEG although he is on morphine and not being able to eat solids anymore. Milkshakes,soups and other high power drinks are part of his daily diet. He is quite of a stubbord man and has not made his decision without intense reflexion and research and discussions with people.

HAVING SAID THIS, if your fiance is having trouble swolling right now, it is paramount that he gets all the nutrients he needs to get his body in a good space. I can testified that David said that if he would have the combination of chemo and RT he would have not been able to make without the PEG. So I would advice that your fiance thinks seriously of the consequences of not having the PEG. I think that from what you wrote, he would benefit from it. Again on that post mentioned above, heaps of people have shared how "easy" the procedure is compare to the rest.

I'll think of you

Marie-Lyne

Thanks guys, I'm flying to see him this weekend and will be able to see for myself exactly how he is doing. His first round of chemo was yesterday and he was in good spirits and hadn't had any side effects as of last night. However, this morning he stated that he didn't feel as well, didn't feel like himself - which I really didn't understand.

He only explained to me that the doctors wanted to start with chemo and then possibly do the surgery or will then do the chemo with radiation daily. I believe that he has only told me as little as possible and has even said that he doesn't want me to stress if things don't look as I think they should when I see him tomorrow.

He tells me that he can only get down soft foods like mashed potatoes because his gums are still soft from the teeth being extracted. However; I think that if he could chew he would try and eat what he could with the assistance of the morphine.

What can you recommend for him to eat or drink while he's deciding if the PEG will be necessary?

Ms. Ann

Sorry to hear about your Fiance. From our experiences, it was nearly impossible to swallow anything after the first month or so of chemoradiation and immediately opted for the stomach tube.

Feeding and hydration are very critical during the treatment and post treatment process. Lack of hydration as we found out required several stays for us at the hospital to get fluids through and IV.

The PEG is a very good option.


Regarding swallowing, we are 8 months out from end of treatments and swallowing is still a major difficulty even after a couple of esophagus dilations.

Ms.Ann, help him find Danny's Shake recipe here, do pureed soups and vegies, try angel hair pasta with cream sauce, there are lots of good suggestions for food here, BUT they are not easy to find [Ahem Brian]. If he can swallow mashed potatos,perhaps he can do oatmeal, cream of wheat, thinned with milk. Let us know what he thinks he can swallow and we will get you food ideas. Amy

Ms. Ann,

I'm over a year out from treatment and still on a soft food diet. I never had a PEG tube. I swallowed as best I could all the way through my chemo and radiation treatments. Painful at times, and I probably should have gone with the PEG. But I'm one stubborn SOB. Excuse my language!

I put almost anything you can think of in a food processor. You just have to experiment. Usually any type of pasta and sauce is good. Soups and stews are great. I also drank my share of boost or ensure. I found that the Wal-Mart brand, equate, is just as nutritious and tastes just as good. Saves you a lot of money also. I'd put the equate in a blender with some ice cream and some fruit and make a very good milk shake. Not only did it taste good but the cold felt great going down the old hatch.

As JAM suggested as well, oatmeal and cream of wheat are great and nutritious. Pudding and applesauce are very good also.

Good luck,

John

Ms Ann
As John said alot of things can go into the blender..at the extreme and when he was getting bored with tha same old stuff etc Bob even had pizza in the blender...put extra sauce and pizza in the blender and made a sort of pizza soup it was pretty good actually...seriously oatmeal, yogurt. and pastas or veggies cooked very soft with cream sauces, smoothies, eggs with hollandaise sauce, rice with butter and milk all where regular menu items for quite a while and most things did have to be pureed a bit in the blender regardless of how soft i thought they were. From what i have read here the PEG seems to be a lifesaver for most so and it was hard to get Bob to eat sometimes. If I knew what I know now I probably would have pushed Bob harder to get one.
In regard to using the morphine be aware that one of the side effects can be constipation. It can be really bad and uncomfortable. Bob took Senecot I believe there are other alternatives and prescritions ....there is more info somewhere here about it that you may want to look up.

Ms Ann
As John said alot of things can go into the blender..at the extreme and when he was getting bored with tha same old stuff etc Bob even had pizza in the blender...put extra sauce and pizza in the blender and made a sort of pizza soup it was pretty good actually...seriously oatmeal, yogurt. and pastas or veggies cooked very soft with cream sauces, smoothies, eggs with hollandaise sauce, rice with butter and milk all where regular menu items for quite a while and most things did have to be pureed a bit in the blender regardless of how soft i thought they were. From what i have read here the PEG seems to be a lifesaver for most so and it was hard to get Bob to eat sometimes. If I knew what I know now I probably would have pushed Bob harder to get one.
In regard to using the morphine be aware that one of the side effects can be constipation. It can be really bad and uncomfortable. Bob took Senecot I believe there are other alternatives and prescritions ....there is more info somewhere here about it that you may want to look up.

I really don't understand as to why doctors give an option to the patients regarding the PEG!!

While under treatment,there's so much already to worry about & taking care of adequate nutrition through mouth is one worry to be spared of, as a result of the Peg.

During radiation,I hardly took much by mouth despite my RO urging me to do so.According to my MO,if i forced myself to swallow amidst the radiation nausea & discomfort then there's a high chance that i'd be put off with the swallowing process altogether as subconsciously i'd be associating the two together.Now it make sense.I got rid of the peg,few weeks after radiation & started swallowing & eating pretty fast too.

During radiation,maintaining your weight is extremely important & I did very well due to the PEG.I actually didn't want to get rid of it as i knew after it's removal i'd have to drink that horrible Resource ( similar to ensure).

It has been a true roller coaster since I was last on the site. I do want to thank all of you for your help and words of encouragement. The cisplatin has been really devastating for him and he is now a week and a half out from his first round and had to go back in for fluids, etc. and started throwing up again last evening. He continues to drop weight, yet his doctor is trying to have him hold off on choosing the PEG. Now after all he has to deal with we just found out that his insurance doesn't cover prescription drugs. He is extremely fearful right now of going through is second round and I'm trying my best to be supportive and strong, yet this is so difficult as a caregiver, so I just can't imagine where the strength comes from of those of you that have gone through it. May God Bless and Keep all of you!