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Joined: Apr 2004
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Hi Nelie,

I had the injection of amifostine before each rad treatment (37 in all) and I had no reaction to it whatsoever. I know others had problems and had to stop so I guess I was one of the "lucky" ones. The only thing I didn't like about them was the actual injection which really wasn't that big a deal but at the time I guess I was just being a baby! They said they would normally make the injection in the stomach fat but since I had almost no fat they ended up injecting it in my upper hip/butt area. The area of injection would be a little sore but alternating between left and right side seemed to help a little.

Anyway, sorry to be long winded on such a simple question. I hope you'll experience no side effects from your injections.

Hugs, Nancy


Stage IV oral cancer (tongue), T3N2, total glossectomy with right and left modified neck dissection 7/03, rad /chemo ended 11/03
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Nelie Offline OP
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Nancy, I really appreciate your answer about the amifostine injection. Now I'm wondering about the port they are putting in--if they'd normally inject it into stomach fat, maybe injecting it into a port is not such a good idea.

One more question to ask someone.


SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
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Nelie Offline OP
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I just got back from the CT scanning session where they also make the mask. It was a little uncomfortable---less so once I asked if they could put a pillow under my knees so it wouldn't be so hard on my lower back. It did feel a little scary with the pressure of the mask on top and also the plastic head/neck support thing they use was digging into the back of my head on one side--I felt like I was getting a headache by the end of it all.

Anyway, I made it through OK and I'm sure I will get more used to it as time goes on. I appreciate everyone telling me what to expect here--that made it much more bearable.


SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
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You had to ASK for the pillow!?!? I must of had great techs - they always had a pillow, actually a triangular wedge for under the knees. They also gave me a pillow for my butt when I lost all of the weight and had no fat left (along with a couple of heated blankets - first class operation). My mask was so tight in the beginning it left a scale like impression so I took a digital photo and colorized it green - I looked just like the Creature from the blue lagoon. It'll loosen up.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
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"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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Nelie Offline OP
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I had the scales on my face too! I was wondering why people were looking at me funny until I got home (but I think they were wearing off by then).

I am surprised they didn't have a knee pillow ready. They did when I went for the CT scan when I was being staged. But that was at an outpatient branch of the hospital that has a CT imaging center on the other end of town--they apparently aren't set up so kindly at radiation medicine in the hospital. At first when I asked for a pillow they said they didn't even have one but then someone went and found one. I could have used a warm blanket too--it was cold in there especially when the CT scanner was going (it must have a powerful fan).


SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
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You should let the manager of your radiation facility know how the first day went. I'm with Gary, I can't imagine having to ask for a pillow. Their lack of attention to comfort and detail simply isn't professional and it would make me question their attention to detail with your treatment. Speak up about these things, it might matter. This treatment is meant to save your life and it is going to be harder on you if you go every day to a group of people that lack compassion. Give me their phone number, I'll give them a call!!
Hang in there,
Minnie


SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
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Nelie Offline OP
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I was thinking they might not have wanted to do a warm blanket because of that contrast stuff they shoot into your veins before the CT scan that makes you feel all hot for a moment or two. But when that was over I felt even colder!

You're right, though, Minnie, I will let someone know. Actually one of the oncology nurses there is one I have come to know because on the weekends I have been going to the hospital to have the dressing in the breast icision changed and the incision cleaned (during the week my surgeon's nurse does it daily) and she has been the oncology nurse there at the hospital on the weekend. I think as a nurse she'd be more likely to see those things as important and make sure they are changed in the future.


SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
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Whoa, Nelie! smile
You are one busy young thing!

I can address a few items:
The PEG seemed to be no big deal for my husband, and they did not have him stay in hospital but for a few hours to rest after insertion. Besides it being a 'pain in the neck' to keep clean, and the fact that it is in the way, he's not complained about it. It was put in prior to
radiation treatments (AUG 2004) and he is still relying on the nutrition it allows him to take.

The teeth issue: he had none pulled - everything was in great shape. He is, however, required to use flouride trays nightly - for the rest of his life. It is a 15-minute bedtime ritual, and he only misses on night like last night, when his congested head just wouldn't allow him to keep his mouth closed that long.

Good luck, kiddo! You are certainly approaching this with a great attitude! Keep it up - - you make me smile smile
Nicki


Nicki, wife of Thomas
dx July 2004, SCC, Stage 4 Tonsil. Tx begun 8/4/04. Cisplatin/Xeloda x 4; IMRT 7 wks, 8/7 - 10/25/04 Modified Radical Dissection (right), Selective Dissection (Left) 12/10/04.
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Nelie Offline OP
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Well, I only hope I have a good attitude once the chemo/rad starts. I'm not sure considering what a whiner I was last night and this morning at the hospital after having the PEG and the port put in.

They told me they were using "conscious anesthesia" when they inserted the PEG. First of all, as a student of the psychology of consciousness, I have never liked the term "conscious anesthesia" being used to mean "you'll be conscious at the time and it might hurt but you won't rememeber". Second, this is the second time (a colonoscopy 4 years ago was the first) where i had a "conscious anesthesia" procedure, it was VERY painful/uncomfortable, and I DO remember it.

I remember gagging on the tube with the camera that they put down your throat (but thinking that since I was so dopey it really wasn't so bad) but then I also remember writhing in pain when they inserted the tube. The gastroenterologist, who is a nice guy and got me in at the last minute for this, later told me that he thinks it's actually easier and not such a big deal when people have already wasted away a little bit, are malnourished, and haven't been using their stomach or stomach muscles much lately. With someone relatively healthy gets it done head of time for radaition he said he has noticed it seems to be more painful (during and after the surgery). Anyway, I don't know if that's why, but today (over 24 hours later) I feel like a large horse gave me a good kick in the stomach (I did have had that happen once too, years ago) and last night just the use of stomach muscle it took to stand up straight was almost too much for me!

That's whine number one, whine number two is that I seem to be running a low fever, maybe just a reaction ot all the surgery, but after that last post-surgery infection, I'm worried about that. We also had to wait around the hospital all day today just for both surgeons to come around and approve my release which was a drag.

I'm still planning on seeing some friends tommorrow, though, before radiation starts. They are coming here, though, and I told them I wouldn't have much energy for going out anywhere.


SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
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Nelie, I found that the first few weeks of rad wasn't that difficult. It started to get a little draining in week 4/5 or so and by week 7 it was pretty difficult. So you may be able to socialize a bit in the first few weeks without any issues. We all react differently, but you may have some time on the front end of your rad treatment.


Regards, Kirk Georgia
Stage IV, T1N2aM0, right tonsil primary, Tonsilectomy 11/03, 35 rad/3cisplatin chemo, right neck dissection 1/04 - 5/04.
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