Oh Laurie. Its like a veteran looking back on a recruit! I have the smiling selfie I took the first time they strapped on the Cisplatin. I had no idea. I started at the same time as Hellion. We're coming to the end of week 6, I'll share a few important points from my experience.

When people tell you what to expect, words like nausea and constipation are just words. You look back on a time in your life when you were nauseous, you're thinking seasickness, maybe a hangover. Nothing prepares you for 8-9 days straight of it. But it won't kill you. As long as you can medicate yourself orally, and get enough food and water down, the unpleasantness will pass. It doesn't feel that way but it does.

Constipation can be a very serious problem. The change in diet and the painkillers meant I didn't poo for 7 days. It backed up so far it made me nauseous to the point I couldn't medicate or hydrate orally anymore and had to be admitted to hospital for 4 of the worst days of my life. I seriously wanted to die. When the doc says take Movicol, take Movicol (or whatever it is called there) no matter how vile it is or how nauseous you are.

Other strange things will be happening to your body that your previous bodily experiences won't prepare you for. Keep ahead of the game with oral hygiene, mouth washes 4-6 times a day and sorbolene on your neck 4-6 times a day now, not when you start noticing it go red. I can thank my wife for rousing me into doing those, I'm doing ok with those now. Keep ahead of the pain relief, being a Doctor you'll understand titration a lot better than most.

I take on board what Paul and Christine are saying about the PEG wars. When I was hospitalised with constipation and lost 15lbs in a week, I thought a PEG was inevitable. I spoke to the Doctor this week and he said no. A PEG is a whole different level of care and attention you want to avoid if you can. He said hold on to normal as long as you can. The longer you can maintain normal swallowing and normal food the shorter your recovery will be. But the bottom line is you must get the calories down somehow. Your situation is a bit different because you have had surgery, I don't know how that affects your swallowing.

Cisplatin causes tinnitus and can lead to permanent hearing loss. If you have any tinnitus be sure to mention it to your Oncologist before you get your next dose. Hellion was taken off Cisplatin because of it, mine noted it but didn't consider it serious enough to stop the last Cisplatin hit next week.

Every cancer journey is different. Hellion and I, same age same cancer starting the same treatment at the same time have had very different experiences. We've both had some very tough roads and we may not have seen the worst of it yet, but we are getting there and we will beat this.

If you decide to not get the peg tube now, there are other options later. Some patients will try to tough it out only to struggle when it gets really difficult, at the end. You can at that time get a nasal tube which works great as a temporary aid. It does not require surgery to have it placed.

Thanks all! I feel better today. Nausea is mostly controlled and I'm forcing the cals down. The liquid is no problem. It's just so damn hard to eat when nausea is tellin u no! But I absolutely get the importance and I'm on it! After these posts am inspired to go a bit longer b4 peg. Like some others, I am loathe to undergo any additional procedure. I also have a negative mental factor. In my job I work w small hospitalized children who are mostly chronically ill, and they all have G tubes due to inability to eat due to brain damage, or destroyed GI tracts, or whatever super bad thing. So in my mind, Gtubes do not have a good association! However if I need it to save myself, I'm willing. Took a couple weeks to wrap my head around that one, but I'm there, if needed. Anyway I'm off to attempt a shake! Have a great day everyone; am so happy for OzMojo and Hellion who are almost done! Congrats!! The way I look at it, tomorrow Im 1/6 done, and Im already 1/3 down on chemo. Not bad!

Glad you're started and doing well! I would hardly call myself brave -- I've vocally complained my way through every step of this process . I came to this forum to be able to do that anonymously and still preserve my rough-and-ready image in the real world!

None of you guys would know to see me on the street that I'm THAT whiney Hellion and none of the people I know in real life would ever know that I whine so much about this! It's a pretty good deal.

I had the PEG installed at my care team's insistence and I resisted using it but have hit segments where I was glad it was there. Some of the mouth sores, even with rigorous care, made eating prohibitively difficult and I was glad I could supplement my intake with it. When the thrush was terrible, I was unable to comfortably take even ice-cream smoothies orally.

That said, I am in no position to advocate for it -- I listened to my team's advice because I was worried that, despite being a mean, stubborn SOB, I might reach a point where I couldn't maintain my intake orally, and I was unwilling to do anything that might jeopardize my schedule. If I had to have it installed during treatment, they said I may have to postpone treatment for a short period while they did it and I decided that was worse than the alternative they were offering me.

Those were my reasons -- I don't want to argue with anyone here about it -- just explaining why I let them do it. This treatment is different for everyone -- i hope you never have ANY occasion to need the tube -- certainly many people manage without it.

Good luck, stay strong, keep us posted!!

The Hellion

What's old may be new again! Here is a new article regarding proactive head and neck cancer nutrition, via home enteral nutrition support, being revisited. You may have to register to read medscape. Peg wars continue lol.

http://www.medscape.com/viewarticle/824917

What PEG war! I laid down my arms and now a pacifist. Don't get one until you need one. Pretty simple. :-)

That's true in some ways - and those who know me - know I am in no way an advocate for the peg. I think it has both benefits and detractors and is very much a personal decision. The problem with waiting to get one "until you need it" is that by that time you may be malnourished and dehydrated and that can have a serious impact on healing and overall treatment. Not everyone realizes they are slipping down the rabbit hole until the knock themselves out hitting bottom - at that point they may have no choice but to stop or delay treatment to get back on their feet -this can be detrimental since treatment if possible is most effective when given with no breaks. ( immunity and overall health = nutrition )

I personally didn't want one. My dr. insisted. I had it in, couldn't use it, did the by mouth thing through treatment and had it removed two weeks after treatment was over. Small scar. No real pain.

It really depends on the person.

hugs.

Don, I always got a kick out of the term when I first heard it, "Peg Wars." It was long before me, and I came on at the back end when the dust settled. It's probably just as old as the Hatfield's and McCoy's lol.

"Peg Wars" created more activity than religion and politics together!

Whatever floats your boat. Personally - I like to be prepared for "unforeseen circumstances".