I completely agree with Don. Let the peg wars begin, AGAIN!!!!! Per my nutritionist...anyone who goes thru radiation and chemo for OC should automatically get the peg tube. It saves you from putting yourself in a bad situation where you have to have surgery when you are very weak. Its so much better to have one and not need it than to need it and have to wait for several days to get it. By then you will definetly have been hospitalized.


Im one to look at the positives. Please dont let all this stuff get you upset. Its always scary facing the unknown. Sometimes those of us who have gone thru this already forget how scared and upset we were and how the horror stories effected us.

Go out and enjoy yourself thru out your treatments. There is no written law saying you will feel lousy all the time. If nothing else, sometimes just taking a scenic car ride or walk around the block will brighten your day. Plan for the worst but hope for the best. You sound to me like a very intelligent and strong young man. Please continue to do everything you are able to and dont let cancer steal your good times away from you.

The most important thing I can tell you is make a list of everyone who offered to help and their phone numbers. Tell them that you will call them later when you need their help. Even if its to pick up groceries or prescriptions or take a pet to the vet. All these little things will take your precious energy. Pay attention to this and conserve it when you are able to. Here is an important link of info compiled by OCF members.

http://www.oralcancerfoundation.org/board_images/GTI_draft.pdf



Also, welcome to OCF Michele.

Nathan

As a grizzled veteran of the "PEG Wars", I've had quite contentious battles with posters here. so much so that Brian had to close down some of the threads. Even then, some posters went to Private Messages to continue, but that did not work out so well for them as I was free to be more caustic.
What I finally realized is that almost every poster's views on this merely mimic the opinions of their medical team. My RO is quite adamant that getting a PEG tube puts patients at risk of impaired swallowing. I've posted some of his comments before as well as other medical "experts" who also believe that a PEG tube is less than optional and should be a last resort.
With the exception of DavidCPA. the party line on OCF is that not getting a PEG tube is foolish or stubborn or less than realistic. I overreacted at first to that by countering that of course I understood those who were not heroic nor strong enought to get by without a PEG tube which then triggered equally personal attacks.
The truth is that getting a PEG tube is a very personal decision that most of us relied upon our medical team to advise us on and then took that advice.
I personally saw the PEG as losing control and being "sick" so to me the psychological benefits of not having a PEG made the increased difficulty worthwhile. Of course my RO's strong backing fortified my resolve.
Ironically, while I could swallow throughout the entire first TX and recovered full eating and swallowing incredibly fast, the surgery & second round of radiation when my cancer came back has left me totally dependent on a G-tube.
It's mostly males who go without a PEG tube from my informal count of posters and I really ignited a firestorm here when I talked about awarding myself a medal for not getting a PEG.
But now that I realized that its just another split in the medical community, I'm no longer interested in fighting the doctor's wars. I've yet to read about a poster who did the opposite of what their medical team advised. Yes, many males did like I did and gamed the system to avoid automatic weight triggers but pretty much everyone echoes what their doctors say on PEGs. For what its worth, I would do it without a PEG again. Just me
Charm

I must jump in here...Clark's RO did not recommend the PEG but after researching it, my husband asked for one and got it. My sister, who has been a great help to us throughout Clark's treatment, was employed at the time at NIH as a Nurse Practitioner in lymphoma. She had first hand knowledge and experience dealing with patients with cancer. Her opinion was if you get it before TX begins, you'll have IF you need it. Does not mean you HAVE to use it. If you wait until you NEED it, and you have not completed TX, your TX is stopped for PEG placement. The RO confirmed that the preferred method for delivering RADs is done with no interruption.

We both wanted to get the best we could to beat this disease. My husband is one tough guy, but TX really blindsided him like nothing we could have imagined. He has since has numerous issues and surgeries, and while he eats by mouth, the PEG has been a lifesaver for helping him maintain his weight and overall health.

It is a highly personal decision. All the best as you navigate this next course.

Yes, I want to be clear that tough guys do indeed get PEGs also.
For some it's just not an issue, for others like myself, it's major. I'm sure many PEG proponents are as baffled by my feelings as I am of those posters who don't want as much pain medication as possible. On that issue, I do go with the conventional OCF Wisdom: pain does not help healing - get relief.
Yet some posters don't want to do opiates or worry about addiction and they "tough it out" with minimal medication.
Finally, it was not my understanding from my RO that if I needed to get the half hour operation for a G=tube, that my radiation treatments would have to be interrupted more than one day, but again individual doctors vary. Most ROs will not do a major second round of radiation either, but mine did.
This decision just underscores the importance of meshing with your doctor. I recall DavidCPA went thru 4 of them before finding a keeper.
Charm

Apparently Sloan Kettering's attitude on PEGs is similar to my CCC - at least in accommodating stubborn guys in their 60s.
[quote]After the weeks of chemotherapy and radiation treatment in New York, Oscar-winner Douglas will have his final treatment session this week.

His recovery is then expected to take a further six weeks, after which he will undergo a series of checks to test the effectiveness of the treatment.

Mr Burry said at the weekend: �No further treatments are scheduled after this week. He�s really happy about it ending. He was determined not to have a feeding tube during his treatment and he didn�t have to have one.�

Douglas is being treated at Manhattan�s Sloan-Kettering Cancer Centre, one the leading cancer specialist hospitals in the USA.[/quote]
MD is 66, just three years older than myself and I know just how he felt.
Charm

Nathan,

Do yourself a favor, buy a vaporizor and vaporize some mary jane. I'm not sure what the the medical mj laws are in texas, but I doubt that Walker Texas Ranger will come hunting down a cancer patient for using some herbal remedies.

I never did MJ during treatment as I had listened to all of the propoganda out there about it and had my preconcieved notions about it. When I was diagnosed I was given so many prescription drugs to ease pain, calm nerves, anti depressants, anti nausea, blah blah blah...and to replace all of them I could've had a few hits from a vaporizor. Honestly I don't know why every cancer patient isn't given a script for it right out of the gate.

Anyway hang in there, best of luck

Hi Nate
there are two VERY important things that so far have not been addressed.
1. Age
2. Current weight

As I keep saying, you are young and you will heal fast - much faster than most. The other thing that needs consideration is your current weight. If for example you were overweight, then the loss of 10-15% of your body weight may not be an issue. However, if you are underweight, this could be a catastrophe and impact heavily on your ability to get through radiation.

For the record, my Alex would have died without a PEG and even with it, he was admitted to hospital for malnutrition and was forced onto a regimen of overnight feeds with Nutrison which is not covered by insurance here in Australia. It was the only feed he could tolerate so we bit the financial bullet. Giving up smoking helped free up enough funds to avoid loss of the house and bankruptcy.

We were sort of lucky because our decision to insert the PEG was a no brainer as Alex is naturally slim and was already severely underweight by the time he was diagnosed (6'1" and 130 pounds down from 165).

You need to consider the PEG according to your own circumstances and in consultation with your doctor or nurse. Your doctor may underestimate the day to day trials of using a PEG whereas your nurse will give you more complete information and support.

Using a PEG is easy, but is "weird". It also interferes with ability to swallow that needs to be rehabilitated down the track. Alex has been on a PEG for over 6 months, still hates it, as it interferes with what he wears, how we socialise (we don't do public dinners) and our intimacy (my approach for a cuddle is very gentle and never impulsive as I try not to catch his PEG). However, despite all this, we could not have done it any other way and his swallow though impaired, still allows him to eat carefully. He chokes if he attempts to swallow without thinking but we expect this will return to almost normal over time. He still doesn't eat enough to keep him alive so his eating is for practice and we continue to rely on the PEG to keep him alive. We are aiming at a PEG free Christmas which will be have been 9 months PEG dependent.

Karen

Nate, I forgot to mention a couple things about the cisplatin. Make sure you get a hearing test before you begin treatments. If you experience anything unusual with your hearing make sure you tell the doc immediately. Also, the smaller weekly doses of chemo are much easier to tolerate. I was scheduled for 3 big doses of cisplatin but only had 2 since I was very ill and the doc cancelled the 3rd round. This has happened to others here too.

It's important to point out, some of those patients mentioned in this thread who did not have a PEG feeding tube, also did not have any surgery in their mouth, throat or neck dissections weeks before their radiotherapy and chemotherapy treatments.

Karen

Damn , I sure wish I could get a peg. Not an option here.