Hi Marina, our thoughts are with you. I just read your initial post today, and now you've been in this hell for 15 days. The good part is that you know more facts and can begin to make progress with decisions. Most importantly, you've already done a lot of research. Good for you! Knowledge IS power, and you and Craig will benefit so much from your full participation as experts. You are the best experts about yourselves, so keep asking questions of your health team until you are satisfied that you understand what it is they're proposing.

So how are you holding up? I want to reassure you that I was extremely ill in 2006/2007, and now I am extremely healthy and grateful for every day.

My PEG was mandatory, along with the Hickman catheter. They were both important to my recovery, though I still made myself swallow at least once a day. Even with the PEG, my weight dropped to 103, and I'm 5'5" -- so I'm not sure that my cells would have received enough nutrition to recover as well as they did, had I not had the PEG. But every situation is different. Hopefully by now you have decided what will work best for Craig.

God bless you, Craig, and your children. You have a world of support right here -- I am so glad you found the OCF. I apologize if I've repeated things you didn't need to hear again, but I've been offline for weeks and just now read your post of 2/10. I wanted to respond right away and tell you that your family jumped right into my prayers as soon as I read your paragraph.

Do keep us posted. We are your best cheerleaders, because we've been through it and totally empathize. You and Craig will get through this, Marina, and even in many GOOD ways, your life will never be the same again. That is one thing we all share, for sure!

Carol

For what it's worth, I can't imagine how painful it must be to have to have a PEG inserted during or right afetr treatment when your throat is a raw mess (they go down the throat to insert it). I think there is misinformation being given here where posters saying things like "it appears" and "from what I've seen here" are not telling you that there is NO data indicating that having a PEG means one is less likely to swallow or more likely to develop swallowing problems, this is just their own form of illusory correlation because they observe that people with swalowing problems have PEGS. Duh. That doesn't mean the PEG caused the swallowung problem.

Again, It is cLEAR that if you develop swallowing problems, which develop from the effects of radiation, you will need a PEG to keep up the nutrition and I can't IMAGINE how agonizing it would be to have the surgery to insert a PEG (which they do by putting something down your esophagus) when your esophagus is already raw and painful from raidation. I think people telling you their pesonal mythology about why they don't have swallowing problems are playing very fast and loose with other people's lives and how well they get through treatment.

I was told by doctors at Dana Farber, one of the top CCCs in the nation that they required the PEG for all patients getting both chemo and radiation because it was so improtant to keep up nutrition during treatment. Your logic is exactly right that you don't have to use the PEG just because you have it, but having it COULD make a huge difference in how you get through treatment and your recovery.

Nelie

This topic will never die here. I have lost count of how many times it has been discussed since 2002, and the original board. The take away from all this has to be something very simple. You can't heal or get through things without proper nutrition. That is not an issue of debate. If you lose 10-15% of your body weight that is a black and white indicator that you are not getting enough calories and certainly not proper nutrition... at this point if your docs are on top of things, you will be getting a PEG. If they don't recommend it the smart patients will ask why not.

Even with a PEG you can take some things occasionally by mouth as the pain allows you to. That comment should satisfy those that continually post here that you somehow forget how to swallow, or that you develop dysphagia or strictures from not using your regular "by mouth and throat" eating process. Personally from the therapists that I have talked to and the doctors I deal with, they agree these are treatment damage related issues and whether you PEG or you don't PEG, it isn't going to change things. Radiation is a bitch and the scar tissue that it forms, the nerves that it destroys, and many more things, are components of why these issues occur. Getting a PEG midway means that you are ALREADY behind the nutrition curve (which you could have avoided) and you are already compromised nutritionally.

As to David's comment, I fail to see how someone can use a PEG to their ultimate disadvantage. He clearly thinks that people become dependent on them. Having had one of these things (which he clearly states that he has not) I have the advantage of knowing this from both sides. I didn't want a PEG. I fought it like crazy for reasons that were entirely emotional and not logical nor correct. I lost a ton of weight and my docs forced me into it. In retrospect, I don't know what I was so afraid of. In the beginning, except for water, it was all I used, my mouth was bloody with mucocitis, and every inch of it was raw and painful to the extreme. Eating, even on morphine, was not an option. Everything, including my pain meds went into the PEG.... 8 months later I was about 50/50 PEG and ultra soft foods. One day I was finally all on oral feeding, and 30 days after that when I was sure that it was for good, I took the PEG out myself. ( Another story) There is no reason to believe that a PEG is used to anyone's detriment. That means that you believe the problems arise from lack of use of the throat, and that is contrary to medical facts as to why the problems arise. Having said that I would certainly try to take things by mouth as long as it is practical. It adds a sense of normalcy to your life, if you have a taste left, it may even be pleasurable, and from a purely psychological perspective it reinforces the fact that you are still living somewhat a normal existence. If you do find yourself 100% on a PEG stretching exercises (tongue blades between the front teeth etc.) are always going to be mandatory... I take that back, those are mandatory for anyone getting radiation with or without a PEG.

Marina- As I have said before, my husband's PEG has been a lifesaver as the surgery and the treatment made it impossible for him to get nutrition and fluids orally for quite some time. Even though he can take some my mouth now, I believe he would be in worse shape without it. His was put surgically into his stomach-not through his esophagus as he had alot of swelling and could not open his jaw wide enough to allow it. Since he has had more cancer appear and needs more treatment he will probably have it for some time. He has finally come to terms with the PEG and realizes it's advantages. Best of luck, Sue

[quote=EzJim] I had the rads and Erbitux on both sides of my throat and my mouth. Maybe I'm justtoo hardheaded for it to bother me, but I haven't needed a PEG yet. [/quote]

Jim, you posted elsewhere that you have lost 44 pounds since starting treatment. That is 44 pounds in a couple of months or less, right? That is not a good thing. That much lack of nutrition when your body is being assualted by radiation is not going to serve you well in your recovery at all. It will keep you feeling bad for longer--not probably, but definitely.

You are obviously a tough guy and have been through a lot, but I think you should be talking to your doctor about the PEG since you will be probably feeling worse for a few weeks before you start to feel at all better. I don't think someone who has lost that kind of weight is any advertisement for not having a PEG during treatment. Many doctors would have insisted you get one by now. PLease take this in the spirit of caring with which it is intended.

Nelie

Marina

First of all, my thoughts and prayers go out to you, Craig and your family. I'm a fellow Canadian, and my kids were two years old and four months when I was diagnosed.

I was not given a choice regarding the peg as I had lost 50 pounds by the time I was diagnosed. I didn't want the peg for emotional reasons, but I'm extremely thankful my oncologist insisted as I truly believe it helped save my life. I held off on using it for as long as I could, but by the end of four weeks of radiation, I could no longer even drink water. For about four weeks, I took all of my nutrition through the peg.

I think of it as an extremely valuable insurance policy. Like many others have said, you don't need to use it if you don't have to, but it's nice to know it's there if needed. I had the peg removed two months after the end of my radiation and did not have any trouble relearning how to swallow.

Best wishes,

Sam

Hi, my husband had PEG tube. We honestly had no issues with getting it and did not realize that it is an emotional issue for people until later. It was a lifesaver and caused no problems at all. He did not need to use it until about 3 weeks into treatment. The kids (8 & 4 at the time) thought it was cool. He let them pour water down it and it would "burp" which they thought was so funny. Then, 3 weeks into treatment he was hit like a train with pain and he would have starved to death without that thing. He was able to get it out about 6 weeks after treatment. Now, it looks like he has two belly buttons which the kids also think is funny!

As far as working, my husband is also self employed so I definitely relate to the needing to work aspect of things. He functioned at 100% and worked no problems until 3 weeks into treatment. The side effects and pain came on all at once. It got pretty bad and there was no working possible. He was back to working fairly soon after treatment stopped.

Speech was an issue once again about 3 weeks into it. He could not really talk and did not have much he wanted to talk about.

This is going to be a challenging time but you will get through it. It is actually one of those things where I did not realize how challenging it was until now when I think back on it.

Marina,

My heart goes out to you. My father was diagnosed the past few weeks with stage IV cancer with the primary lesion on the base of his tongue and mets to multiple lymph nodes on the right side of his neck. He will start his first 6 hour chemo tx. tomorrow and then radiation this week. They will place a feeding tube prior to radiation for optimal nutrition and we have been trying to beef him up since the diagnosis. This is the most wonderful site, full of sincere caring and support from families and survivors who have went through this hellish ordeal. I was relieved to see such positive recovery with the stage IV cancer diagnosis, it gave me hope I needed at a time when I had no hope. Talking with the other wonderful people on this site has been a godsend for me and I am sure it will be for you too. Your family is in my prayers and I'm sending you cyberhugs.

D'Arcy

Craig had his first chemo and radiation on Tuesday 11th. He had a further 3 radiations Wed-Fri. He opted not to go with the PEG (against my wishes I might add, but it's his body).

So far he is doing pretty good, mild nausea (no vomiting) but controllable with drugs. Some drying of the mouth but still a good amount of saliva. Neck is swelling up, we can only assume as a side effect of the radiation. A couple of other symptoms I've posted about in the Medications/Procedures forum under "Day 4 of treatment".

He is still driving and working albeit with some naps in between. This has been a godsend as the rest of us have had flu all week and we've been the ones vomiting and on bed rest! I can't imagine what I'd do if I had to look after him as well as the kids. It's as much as I can do to make sure he stays away from us

Thanks for all the messages of support, we appreciate them.

Hello Marina,
I did have a PEG and it did get infected which delayed my treatment a week. However it did make taking nourishment easier especially in the later weeks. I did however take David