If I'm I getting this right I would most likely be better with a peg tube and still drink all I can thur mouth to help keep it moist and so it won't be a problem with swallowing later and useing the peg for high engery drinks, when I just can't eat. and to get plenty of water in me, no mather what.
I think I knew about driving....lol I was just hopping that I would have a few better days, like week-end when I didn't get the radation. I don't feel like cleaning house now, so I gusse I had better start planning. I have about 6 weeks before they start, they want me to come back on the 2nd. of Sept. Now I'm wondering about the 5 teeth that I have it's set up with a lot of medal to hold the bidge. He ask me if it was wired in. I told him no. it was put in over 40 years ago, it is cemented in good. He just wrote it down, I wish he had told me. I most likely have filling in the teeth, it's been so long I don't remember.
Thanks Wilma

Wilma:

Its entirely up to you if you decide to get the peg tube. There are both pros and cons for having it. The main thing is that there could come a time when you can barely swallow water much less eat something. Thats when the peg tube is a lifesaver. It can be uncomfortable at times and its a bit of an adjustment having it there. No matter which way you go, just remember trying to get 2000 preferrably 3000 calories in per day without one isnt easy. Same goes for minimum 48 oz water and still try to swallow everyday. There are some people here who can do it, I wasnt one of them. Just keep eating anything and everything you want now. It could be some time once treatment starts til things taste like they should again.

You have lots of time to prepare for everything you need to do. Lineup the helpers now.

Hi Wilma, I am going to second what Christine just said- If you are THE caregiver to your husband now, it is probably going to be very tough going for you while you go through your treatment. Round up all the help you can for shopping, cooking, house keeping whatever -- as to the feeding tube-- if your husband isn't able to help you go through this, then a peg tube will be a really good safety net for you if for no other reason than getting medications down and staying hydrated. [and having a port for chemo and blood work and invusions is a "no brainer" to me, but I guess it depends on how good your veins are and how much you like being poked on]. Some people sail through this, but most do encounter some rough spots along the way. We just want you to be prepared. Best luck. Amy

Wilma
you definitely do NOT want to take a break in your radiation schedule.
Also, if it turns out that you would need a PEG the effects from the insertion are likely to be miserable (inflamed mouth).
I did not use the PEG for a long time and I hated the thing, but if I had to do this again, I would get both the PEG and the port again. Having a PEG does not mean that you all of a sudden forget to swallow.
I used mine primarily to supplement my liquid intake (about 4 weeks) and for a shorter time for food supplementation (2-3 weeks). No ER visits for dehydration.

M

markus, how long did you have the peg, how long after radation was it taken out? what kind of problems did it give you?
was you able to eat soft food and drink, all but the 2-3 weeks that you did food supplements. I think I could go that way. eat what I can and take in extra water or what I need thur the peg. I'm not wanting to come depended on the tube, If I go that way I only want to use it when I have too and get rid of it as soon as possable. If when I started loseing too much weight or not being able to get what I need thur the mouth can I do both. like do at lest 1 food supplement a day. untill I have to depend on the tube. From what I'm reading there is times when it is inpossable to eat or drink. I do know that everyone reacts different to the tube and radation and chemo....It just helps me knowing what can happen, I don't like susprises. If it can happen I want to know, If it don't happen no harm done. It helps me deal with things. I want to keep all the water and food in me that I can. most likely, most of it I will throw up anyway. Boy I'm really looking forward to this....NOT

one more question He said I would need radation with a small amount of chemo, how is that done, He said that they would put a port in, he checked the veins in my arm, do i get both at same time or wait till ones done to get the other?

Lets see
I got the PEG after the first or second Rad treatment (24th of May). At that point there were no effect from the radiation. It was taken out in August, once it was clear that I could eat enough normally. I would not worry about PEG tube addiction, I cannot imagine how one gets addicted to the thing. Pain medication, is a different story.
It is best if you do not throw up. The medication/chemo makes you nauseous but there are drugs to hopefully avoid this, this is something to prepare for (your mouth is really sensitive).
Re small amount of chemo. I am not sure what this exactly means. From what I gather you are getting radiation with concurrent chemo. There are generally two ways of doing this. Big amounts of (cisplatin or carboplatin)** typically 3 times, or alternatively, weekly. If you get this weekly the dose is lower (see my signature) and the drug is better tolerated. The point of concurrent chemo is to sensitize the cancer cells and thereby enhance the effect of the radiation and also to provide some protection against cancer cells that may have migrated or are about to do so. I think this is what he MAY have meant but you want to check on this! In order for chemo to be useful you cannot just take a little bit.

** You could also be getting other chemo drugs such as 5FU etc or something like Erbitux.

Hope this helps

Wilma,

Each of us can respond differently so you will just have to wait and see how you will handle this crap. Again I was/still am a very do it yourself stubborn type and I drove myself to and from Tx which was an 85 mile RT way more than I should. I didn't want to impose on my wife or others to cart my butt around but there were many times towards the end that I shouldn't have been allowed behind the wheel not only for my safety but for everyone else around me. Sometimes I would go thru a stoplight and not even remember if it was red or green!! Finally it got so bad for me the 2 weeks post Tx that I had to let others drive.

During all of my Tx I never drove at night so I went appx 9 to 10 weeks without night driving and when I drove at night for the first time, it was weird to say the least.

Wilma,

If you are going to get the PEG..and it looks like you are leaning that way, I would recommend that you have the surgeon put your port in at the same time. One anesthesia, one day and about three days of recovery at home. In Bill's case, he took his first weekly chemo on Thursday, had his PEG and port placed on Friday, recovered at home over the weekend and then started his radiation on Monday. He was sore and needed someone to care for him during those 3-4 days but by the next week he was doing better and able to go to work. Starting about week four of treatment, he needed someone to care for him...driving was not safe and he felt lousy. He never had severe nausea..and never threw up...just felt lousy and weak and his mouth and throat hurt requiring heavy pain meds.

You will be able to eat and drink by mouth as much as you like with the PEG tube..it doesn't get in the way of that at all (except for the couple of days following the surgery when you don't feel that well.) In Bill's case he ate by mouth all the way thru week three of his treatment but starting mid-week four, the pain got severe enough that he went totally on to the PEG for his food (we had cases of cans ready)and meds and only drank 1 bottle of Gatorade by mouth per day to keep his swallow mechanism intact (I would set the bottle beside his chair each day and remind him to finish it...not easy, but he did.) He started eating by mouth two weeks after his treatment ended.

He had a very easy time healing from the tube placement...no problems with infection or soreness (after a week or so.) I would clean the area on his belly after his shower each morning and put a fresh gauze pad around it (they make a split pad that slips under the little button on your belly,) then help him wrap a large ace bandage (with velcro closure) around his torso to hold the tube in place. He made the decision to keep the PEG tube until his second checkup, so 5 months or so.

Hope this helps you make a decision,

Deb