"OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,264 Likes: 5 | Hi - okay the peg is as I have found out something that is determined by your dr. If you are against it they can't force you to have it - it is also something that is determined by the practices of your hospital and country you live in - what I gathered from one person in Australia - her dr. Said he didn't want to use one to help preserve the swallowing reflex. - it wasn't standard practice there. My dr. Said he didn't want to do radiation without it - this was the practice of the hospital - I agreed though I probably could have insisted not. I think it also depends on your weight to start - if you are at a normal weight or the low end of your weight range, radiation is such that it does get harder to eat as you go along. Some people lose scads of weight and get dehydrated - these are the people who need one. (it all depends on how you handle the radiation) Needless to say if you weight 120 normally and are 5'6" - a peg might be a good idea. It also depends on you - I generally handle pain well. I knew this going into radiation despite this I said yes because I didn't know what was facing me. I did lose weight - about 12 lbs. I used my peg 4 times twice because I had no energy and was nauseated after chemo - twice because I was told to try different formulas by the dietician. ( it actually made me sick - I could only handle half a can of feed without throwing up ) it takes an hour ot 2 to run a feed too... Which is a pain. They usually like to put it in at the beginning of radiation, or not at all. ( though this is dependent on the dr. And hospital) They don't like to wait until you are too sick to eat and too dehydrated before puttiing it in. - it makes it harder - plus you don't want to get into a situation where you are run down. The only draw back I know of with it (unless it's been put in incorrectly) is the fact that you have to maintain it even if you're not using it- and the fact that sometimes people become dependent on them because they lose their swallowing reflex. Despite what people may think - I wasn't against it. If I needed to run a feed I did, but like I said - I ended up getting sick as my body couldn't handle the feeds, so i decided to chug my ensure instead!
The procedure is done under a local. Not painful - afterward it feels like there's something stuck up under your rib cage but the sensation goes away after a day or two. I'm not sure how other hospitals do it but it only took 20 minutes then they took me to recovery and then moved me to the radiation clinic where they kept me for a few hours - they showed me how to used it too. Then I went home. Talk to your Drs. See what they think about it - likely they will suggest you get one - it can't hurt - but it's best to wait until you really need it to use it.
Radiation is not too bad the first 3 or 4 weeks - I could feel the tightness in my throat from the outset - it was irritating - but you get used to it. I did my exercises for the first 5 weeks (hospital has exercises to help maintain swallowing and mouth muscles, tongue etc..) - or until it got too painful to do them -
Usually the first few weeks you get a bit of a sore throat - some blisters - but they generally come and go if you don't mess with them. Your cheeks and mouth will feel swollen. I rinsed religiously with the baking soda mix, and used Manuka honey from week 3 to 7 - I think it really helped but I'm not allowed to advocate it here. There is a posting or two about it under the adjunctive therapy Forum. Or you can pm me.
This all managed to get me through to the last 4 days of radiation. (I had 33 sessions) for the last 4 days and two weeks after things were worse. Drinking my boost or ensure was painful - they do give you a prescription for magic mouthwash I used that for a few days at this point then I used codeine for a few days, then when it was really bad - last week from Monday to Friday - I used some oxy. Now I only use oxy at bed time - I still have a residual sore throat but it's way better and the mouth sores are almost gone. I just drool like crazy right now! That's the most irritating thing, plus my repaired tongue is very swollen so it touches my palate and that makes me gag! Everyone handles this differently - it's not easy but knowledge is power - figure out what works for you and listen to your body. I lost my taste around about week 3 -4 - ugh! And it is still gone - Another thing that helped me over the last few weeks was switching fro me baking soda rinse (you gargle with it) to flat club soda - which I could swallow - it helps with the sore throat ( was recommended by my hospital ) and also helps with hydration. I've been using it for 2 weeks now it helps. I had my peg removed today. Yipee! It was nothing I could have removed it myself. Took 5 minutes! Chemo is mostly nauseating for 3 or so days. They give you scads of anti emetics to help though - that was the worst of it. -My hospital keeps you in over night because they do a full dose and like to keep you in and run an iv for 24 hours because it's really hard on your kidneys - not all hospitals do this. Also because they do 2-3 full doses - you don't always get the last treatment - my WBC s were down do they could only fit in 2 - cisplatin only works when you are having rads apparently.
Hope this helps - if you have any questions feel free to pm me. It's not an easy road but it is doable. Good luck!
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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