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Amophostine (Ethyol) use during radiation-need feedback


jcawork

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Since you already know all about MY experience with this...I assume you're looking for confirmation from others...eh? :wink:

Let me just say this, in addition to what I've already told you....last week, I shocked one of the radiation techs by telling her I had no problem eating potato chips or popcorn! She said most people with lung radiation, by the midway point, would not be able to eat "scratchy things" as she termed it.

I told her, most people should be on amifostine!! Jen...the shots are not fun on a daily basis. I wouldn't even want VODKA injected in me daily if that were the only way to consume it. The shots do sting a little. But they work. The benefits FAR outweigh the discomfort of a daily shot, if you can tolerate the shots without having either b.p. problems or an allergic reaction.

All I get is a bit of swelling at the site..and then the next day it looks red around the injection...but doesn't really hurt.

Let's see if others have a different tale to tell...but I figure too, if the shots help me avoid a feeding tube....I'll take 'em!!

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Jen,

Good luck on finding something to relieve the pain.

My daughter just had her tonsils out, and they gave her 2% lidocaine oral solution to numb her throat completely.

I suspect the discomfort you're experiencing is too far down for a mere oral application of topical meds.

I hope you feel better soon!

XOXOXOX

MaryAnn

Prayers always

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Jen - Dave never had anything like this to help his esophogus and he had daily radiation for 35 days along with his chemo. He never had THAT much trouble with swallowing. He did get to the point that it was difficult to eat steak and anything too chewy like that, and he did drink a heck of alot of Ensure shakes and eat cottage cheese . . . but he never got a shot and it never got terrible, either.

I will leave it to him to elaborate more.

Karen

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Jen,

My mom was not offered this. Her radiologist used it primarily for throat and neck cancers, and also she tends to be orthostatic with bp that goes up and down too significantly, so he really didn't recommend it after I asked. Despite not having the drug my mom has only had some laryngitis and a little bit of discomfort swallowing-hard, bulky foods like steak. The swallowing discomfort just starting, 3 days before she finishes treatment. I would imagine the location of the tumor and field of radiation may affect the side effects, maybe? Addie seems to have had great results.

Nancy

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Things to bear in mind about Amifostine are:

1. The daily subcutaneous injections are far less likely to cause problems that the IV administration of the drug.

2. Drink a lot of water. If you are well hydrated it helps to maintain adequate blood pressure.

3. Keep a cold compress with you when you go to the appointment. If you are one who experiences a bit of nausea shortly after the injection you can place a cold compress or ice pack at the back of the neck. Not sure why this helps stop the nausea, only know that it can do so for many people. Maybe it scrambles' the signals from the sympathetic nervous system (I take a wet wash cloth and put it in a zip lock bag, along with a few ice cubes.)

4. Don't eat a "heavy" breakfast before the injection. Go light.

5. Bring Saltine Crackers and a bottle of water with you.

6. They alternate between arms, so the shots aren't a big deal.

They're using Amifostine injections to try to inhibit collateral damage from radiation treatments when dealing with Lung Cancer patients more often now, but I did have to ask for this. I have only one lung left, and the recurrence of the cancer is right where the lung branches off the trachea. I need to keep that airway open.

Hope things work well for you Mom.

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Hmmm...didn't know of a shot when going through radiation...

BUT, I HATE needles. Looking back at the "discomfort" I had for the last week of radiation and about a month after it ended, I'd still opt to NOT have the shot...especially daily...even at the worst, I could STILL choke down Double Stuf Oreos (just couldn't get down that milk chaser).

My throat was uncomfortable, my radiation was focused at my "cleavage" area and there was the ol' overspray (that I think zapped my thyroid, but the radiation oncologist disagrees). It was tough swallowing, but I hate needles that much...I doubt I'd have opted for a shot on the "chance" I'd have it bad... :wink:

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  • 2 weeks later...

Hi Jen,

I was never offered that shot. Maybe because I had Rad twice a day, I don't know. I would have taken it though. I ended up not even being able to swallow water easily. It was a few drops at a time for me & that wasn't enough to keep away dehydration. Good luck. Let me know how you make out with the shot if you go that route.

Becky, I can't believe you were eating Oreos!!! I would have given anything back then to gulp a big glass of water.

Rachel

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Rachel,

I could eat the cookies, couldn't handle the glass of milk... Somehow, that swallow mechanism was more painful for liquids...

Jen,

Keep on keepin' on. Maybe the throat thing won't be bad for you - it should be starting anytime if it's going to...

Take care,

Becky

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Well, I've gotten the amifostine shots daily. Only missed two days, because I was already nauseous...so my rad. onc. said to forego those days.

In the last week, I've had a sort of "golf ball" in my throat anyway...and as of today, that golf ball has morphed into a two by four that runs the entire length of my throat and esophagus.

Now that said...... TODAY IS MY LAST DAY OF RADIATION!! so I guess I can cope! :wink:

Even with the shots, Jen....there is some noticeable discomfort at this late stage. It's really only been the last few days that it's bothered me though. I can eat...long as I chew things well...and some liquids go down easier than others.

But I'm told that now that I'm done.....these symptoms should go away fairly quickly. I hope so....cuz dang, up working up to a full order of Chicken Amazing from our local Chinese joint...and I am already salivating, it's soooo good! :D

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Addie,

It will get worse before it gets better. I hope it sticks to 2x4 and doesn't work up to "stud" or "roof rafter" for you and works its way down to toothpick and smaller...

YEAHHHH! Congrats on a battle victory!

Becky

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I did the Ethyol when they started to focus on my esophageal areas. I don't remember how many days or treatments it was. I was doing once a day. Like someone else already mentioned, I had days where I wasn't sure I was going to be able to swallow water. I don't have any idea how bad it could have gotten without the Ethyol.

About a month after all my treatments were over, Chemo, radiation and PCI, swallowing got more difficult. Less painful than when undergoing treatment but I just flat couldn't get things down. The toughest was one of my BP pills, a 90 mg. Procardia XL.

Upshot of that episode is, I believe, the radiation induced inflamation was scarring and healing up and caused what they called a "stricture", or blockage. So, I went in for an "esophageal dilation". It's a procedure where they just run a tube and dilator down to the affected area and pump up a balloon to stretch that area back toward it's normal size. I had it done in April '04 and have gradually gotten better. Not 100% yet, but better. The pill is about the only thing left that's a challenge, but I think I'm gaining.

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Hi Jen,

Haven't been around for a while (my puter goes into self-induced comas at will these days), but glad to see you're tolerating the chemo/rad pretty darn well!!

I finished my 6th round of chemo last week.......will have CT 1st wk of Sep and then talk about radiation. I'll be watching your progress.......and taking strength from you and all the others who posted.

Mary :)

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