Hi Anita. I think this is the first we've met, thank you for the information and advice.

I don't plan on having a Port (PIK, Hickman, or the more common recently, Portocath.)

I asked the Oncologist about this, and he said he doesn't routinely put them in...(which adds weight to his PEG suggestion).

I am only getting (planned anyway) 3 infusions of Cisplatinum, so the Doc thinks they can just do it IV...which is also a good argument for the PEG since my veins may collapse half way through, and need to be hydrated.

So, I guess I'll have the PEG (G-Tube) on Monday, and hope for the best.

Glenn, my fealings don't get hurt easily, so there's no need for Brian to close this thread. I find the dialogue fascinating....and deeply appreciate the feedback.

Mark, I agree with your points, about the diversity of opinions, and the importance of "wandering" to give the fabric of these forums a real-life feel.

Marica, I think you are new to me too :-)

This PEG Tube thing sure brings people out of the woodwork If I'd known that I'd have done this weeks ago.

Sounds like Pete is doing great! I hope to chat with you more.

Barb, where did you read this about chlorine and cancer? really? I'd love to hear more about this. I've been soaking in the hot tub under the moon and stars almost every evening

Maybe it's the general infection, bacteria concern, especially for the immuno-suppressed due to treatments...

Amy, there are some "rules" when you first sign up to the forum.

[quote] Remember that this is hopefully a place for the positive exchange of ideas, not a place to verbally trash someone else. Although you may wish to vent your frustrations, and that certainly takes place in an environment as emotional as a cancer forum, please keep personal attacks out of the messages. If you wish to exchange specific information that includes doctors names, phone numbers, (perhaps to talk to each other on the phone), and similar information, please do it by email between yourselves rather than posting it on the boards. These boards are as private as any messaging boards, and the words you post here will stay here. But while we monitor what is discussed for appropriateness, we cannot control who calls you if you post your phone number. Remember that advice given by someone other than your own doctor should never take precedent over the recommendations of your own care givers, and that the opinions expressed here are those of the individuals posting them, and do not necessarily reflect the ideas of the Oral Cancer Foundation. Of course all of this seems obvious, but we have to state it for the record. Welcome to our community.
[/quote]In other words, just about anything you think to say is pretty much fine.

Also, Amy, "thread" means topic basically.

Karen, good to meet you too, but I am sorry to hear Jerry is in the hospital. It's a lesson for me, at his expense to use the PEG. Thank you both for it.

I hope he recovers swiftly!

All you have to do is click on the number of posts in the bottom of anyone's post that you are reading and all their recent posts will come up in chronological order. A thread is a continuous train of thought being contributed to by many different people. When a topic thread gets off track, it makes it difficult for people to follow the train of thinking. So "high-jacking" someone's thread with a new idea is a no-no. Stat a new topic instead. Rules here are pretty simple and when you were asked to register and got your password etc., you had to click on an agreement that you would abide by them. If you can't find your way back to those rules and really want to read them, I'll post a link. The important ones basically were developed to ensure that every plays nice.... the rest relate to not posting doctor's names and phone numbers etc., especially if you a making a negative comment... and those related to religion and the boards. That one says something like if the original poster did not reference God, or religion in their original post, that following posts should also refrain from religious references...comments like

Besides immersion in water, are there any other lifestyle restrictions with the PEG in?

Will I be able to do just about everything else?

I read some other posts where people had limited function after their G Tube and was curious.

Thanks!

Michael

Hi Michael, I had no limitations at all. i showered, played golf (although towards the end, not very well) worked in the yard. I found it not constricting at all. It was a pain to have because it sticks out of your stomach, but it is really not all that intrusive. It healed in few days after removal. You just have to keep the area clean whike it is in.

Steve

Michael I will have to look that one up. I am all over the net checking out things as the ACS wants me to do some phone work for them with newly diagnosed cancer patients. Not for medical information but for moral support.
I will try and find it and get back to you.

Have a great day and eat all the things you love before next week.

Blessings,
Barb~

We found out this morning that Jerrys port was badly infected.They removed it.He has 2 chemo and 1 rad tx left.We are almost there.I will be glad when all this is over and he is cancer free.

Michael,

My very last word on this matter. I was not concerned about your feelings on the issues. I could see where this topic was going, and I did not like it. I ask to close a topic when it begins to drift too far off the original thought and gets cloudy. I see no problem with spirited discussions on here, but I do not like them at the expense of an on going topic that may contain valuable information. I don't see the need for it, start a new topic if you have a new idea. I don't see Brian complaining about the valid use of server space, use it. You need info on the PEG, it is already here. Use search first. While all of us want to help, common subjects like this
have been discussed at great length, pro and con, before. There is valuable content and comments to absorb from many previous posts. Does that mean that you shouldn't ask a question that has been discussed before? Of course not, but consider that some of the hard content, factual posters like Gary, Mark, Brian, and many others etc. have answered the same question 10 times before, and perhaps this generous giving of their time has some limits.... it might be beter to give them a chance to respondto the new ideas and problems. I am making assumptions here about their time etc. but it only seems reasonable to take at least a quick look at the posting history with a simple tool like the search engine first.

You want my list of things that piss me off that reflect ideas that don't need to be on this board?

1- Talk of killing a spouse, in jest or not.
2 -Talk of infidelity (I'm no prude, it just annoys me) with or without the God reference in the signature....don't get me started on the God reference in the signature, that in itself contradicts the ability to leave God out of your postings as the rules request in many cases where the original poster did not reference their desire to bring a supreme being into the discussions.
3 - Never ending Blogs with no purpose. Rosie's had real value, where hasshe gone?
4 - The new blog has created an atmosphere of "any language/topic goes" and while off cancer topics can be of interest to some, I think the intention of the blog section was for people to chronicle their travel through this process, not provide a place for meaningless babble.
5 - Where has ................... gone? (fill in name of highly
knowledgeable member that we know has not died).

We have lost too many good posters over religion, and the direction away from informational help over the
last year. People with backgrounds in oncology, nursing, and more. Why? Some just got tired of the religious tone of the board (something that Brian posted on extensively at the time) or that help and support were being sacrificed for discussion on things other than our issues with the disease.

Anyone here ever take a click over to the MSN Oral Cancer disscussion page? If not, go on over there and see where we are heading with some of these posts. We don't want OCF to follow that model. When I noted my feelings on the direction of the site, that is what I'm
talking about. There are pages of useless banter intermingled with one or two bits of valid information (at MSN, not here). My point is that this site is the stand out.

Just start a new topic and leave me out of this PEG war.

Oh, if some of you had not noticed in recent postings, I think there are a few broken board rules in the list!

Michael - please do not think of the weight loss as a result of treatment as a good thing just because you could use to shed a few pounds. For sure you will lose a bunch of them. But not getting the PEG and counting on the built of caloric intake from your body's consuming its fat stores in not a good idea. It is not just calories that you need to heal at a good rate (and efficiently), it is proteins and amino acids which are found in ...protein, not fat stores in your body. The radiation treatments are going to destroy healthy tissue at a rapid rate while they are destroying the malignant tissues. Each day your body is fighting a battle to keep the repair work going. This takes proper nutritional resources, and especially proteins and amino acids. If you do not get them by mouth or tube, your body will begin to break down your lean body mass, your muscles, to get what it needs. You will not only lose weight but you will lose the good part of your body mass as quickly as the fat portion of it. Most institutions use 10-15% body weight drop (overweight or not) to determine that you are not taking in enough calories, and other nutritional materials. At that point the decision to have or not have a tube is taken out of your hands and the doctors will see that you get it if you need it. Poor nutrition means slow healing, and a decrease in your body's ability to fight opportunistic BS like fungus, viral infections, and bacterial infections.... none of which is desirable. Radiation treatments and the inability to eat is not a great pathway to that smaller waist size..........

Micheal, I still have my PEG and haven't noticed any other limitations. As Steve says, it sticks out of your stomach and it takes a little while to get used to it being there but other than that it's not intrusive. The swimming thing is really the only limitation I know of.

FWIW, on the "to PEG or not to PEG" question, I was told at Dana Farber that if I did radiation with concurrent chemo (cisplatinum), they *required* that their patients get the PEG before starting. If I was to choose not to have the chemo, then they left the decision about the PEG up to the patient and just kept an eye on them.

There's good reason for this distinction if you read the New England Journal of Medicine studies that show how effective concurrent chemo is, one of the big differences between groups (rad with chemo or without chemo) in acute symptoms is the degree of mucositis that they experienced during treatment. Statistically it is simply much more likely, with chemo, that the mucositis will be so bad that you can't swallow, or can only swallow with extreme difficulty, at some point during treatment.

If you look at the signatures of those who made it through without a PEG who post here, many (most?) of them had rad but no chemo. I think that's worth being aware of in this debate.

Nelie

Michael
I had radiation only with no PEG and I lifted weights, walked alot and worked the whole time. I swim also but did not swim during the treatment because I was tired, and my mouth was sore and couldn't imagine the water and breathing hitting my mouth causing some pain. So from my perspective I really don't know that you will be able to swim but there are other carido and strenght things you can do and should feel comfortable doing.