And while I am on that soap box, people that post here that they (even proudly) state that they got through it all without one, by promoting the "I toughed it out perspective" they do a disservice by forgetting that we all come to this disease with different stages of the disease, different abilities to tolerate discomfort, even different levels of fear tolerance, and different amounts of oral mucositis sores, et. etc. . I have respectfully argued this point with Mark in many previous postings. They are still here, with all the jabs and passion for each perspective for anyone to see, as he says via the search engine.

Funny thing about your above posts, Brian. I just PM'd a long time member on the forum to ask if going without the PEG was some kind of Badge of Honor I didn't understand. Altho my John has griped about the peg alot he has been thankful that he could get electrolytes, pain meds and nutrition thru it], the only really scary time was a few days ago, when his shirt was covered in red blotches and I thought he was bleeding. It turns out that he had not put the gauze pad between the peg and his skin and the strawberry shake he had for lunch was leaking through. Ruined his shirt and my appetite for dinner. And so the debate goes on. Amy

Oral mucositis is a common side effect of cancer therapies, particularly radiation therapy for head and neck cancer and various forms of chemotherapy. It commonly results in severe oral pain that can compromise the duration and success of cancer management. Hospitalizations are common because patients lose the ability to take anything by mouth due to severe pain and must have alimentation supported during this period. Pain management usually requires potent narcotic analgesia. Cancer therapy-related oral mucositis is commonly described as the most significant and debilitating acute complication associated with radiation therapy and chemotherapy. PEG systems are ABSOLUTELY NECCESARY for many paitients. This is something to be decided by the treatment team in conjunction with the patient. It can not be judeged by others with dissilmilar reactions to treatment.

Brian,

Now you have sucked me in! I took our own advice and did a search on the PEG issue so I could clarify my position on the matter. It has, as you know, been more of an attempt at balancing the obvious need for some and the ability to do without for others. I am not now, nor have I ever truly been entirely opposed tot the PEG. You know me better than most here, I like to balance discussions. The post I found was my progress rep after I completed my first radiation treatment. There were a few, but this one seems to do it;

Author Topic: Post treatment update - Progress report
GRE1
"Above & Beyond" Member (200+ posts)
Member # 431
posted January 09, 2003 12:42 PM

Like I said in those original posts with you Glenn, you are one tough guy, a really nice guy, but a guy's guy kinda tough. You don't work as a cop in the big apple without having some brass balls. My guess is in a test of tolerance of physical discomfort, or even just plain desire to tough it out and get through something, I would always place a distant second to you. And I agree in principle, there are some people who can get through this without the PEG, depending on the degree of damage to their mouth and their ability to stay hydrated and properly nourished.

The problem is for most patients, until they end up in the ER with dehydration, or until the loss of lean body mass and slow healing becomes painfully obvious, damage is already being done. While some get weird about the idea of having a PEG ( I posted on my initial feelings about this a long time ago, and my irrational perspective of this vision of myself with a bag hanging off me was a no denial realization that I was really sick, which is a weird realization for someone who already at least didactically knows they have cancer ) I think that anyone who veiws this very minor procedure with trepidation (especially given radical neck dissections and the other genuinely painful things they do to us.... their fear of it all is misplaced. So we don't come to blows in a dark alley one day, let's make it clear that doesn't mean i'm calling anyone who is fighting the idea of a PEG a pussy.... but your mom does dress you funny.......

Brian is correct to admonish me for my opening sentence. It was wrong and I should have thought it through. For that I apologize. I have always felt like I was being called "weaker" to have had a tube by some posters, even though I don't believe they intend to make anyone feel like that. My comment was intended for that scenario, meaning that it's not anything to brag about that you got through radiation without a PEG. Of course there are patients that HAVE to have a tube and it was irresponsible of me to have posted it that way.

Obviously the PEG is a touchy subject. I didn't mean to stir up controversy. I would think if you need it you should get it, if your doc recommends it, you should get it, and if he doesn't and you don't end up needing it, then you should go without. My concern was simply that no one had even mentioned it and due to my sister's very low weight for her height going into this, I was getting the feeling that it might be a cost issue to the docs and hospital vs. a what's good for the patient issue. Anyway - I appreciate everyone's input. Hopefully she'll make it through all right and if not, they'll have to stop her treatment and put in the PEG.

Hi Robin,
I feel very selfish that you feel the need to apologize to us. You didn't stir up any controversy, we did.
To answer the very simple question you asked, yes, I DO believe that lack of insurance can create a lower level of care. People WITH insurance have to fight for many procedures, I can only imagine the battle people with none must face.
I hope your sister can do without the PEG and,like you said, if not they can insert one during treatment.
Keep us posted, we do care.
Minnie

Robin,

Just a side note, Harry did not get his PEG until he was almost finished with the rad txs. He only agreed to it when the doc told him it was no longer an option. But he did not stop txs to have it put in. As a matter of fact, that evening they took him down to do his rad tx as scheduled.

I offer this so that you will understand that not all cases will require that the txs be delayed for the insertion of the PEG.

Also, the RO told us that he considered Harry his last patient that he was going to allow to go that long. He told us that he has decided to have future patients get their PEGs prior to the beginnng of txs in order to avoid the problems that seem to surface in most patients.

I have noticed more and more new patients here that I have also spoken with on the phone are getting their tubes prior to tx and I suspect that the protocols are changing in that direction.

Lastly, the PEG procedure is considered out patient which is significantly cheaper than an in patient hospital stay even though they will likely keep her for a 23 hour observation. Don't know if that helps but I thought I would just throw it out there as extra information.

Best to you and your sister.

Cindy

Minnie & Cindy: Thanks so much for the info and your opinions. I do find this site extremely valuable and I admire every single person on here whether patient or caregiver!