Okay, I have read about a million posts regarding IMRT, in addition to at least that many online references...In LAYMAN'S terms, what can we expect as we anticipate 30 IMRT treatments...There is to be no chemo at this time. We have been told that Ami..whatever that anti-radiation drug is...will be given, in addition to ANOTHER med to counter the effects of THAT one. From what I've read, not many can withstand this medication because of the side effects. Buzz is doing SO well...I'm just dreading this part of his treatment for him. He has lost 14 pounds since surgery on 07/19, but has a fantastic appetite and is eating several times a day. How will IMRT affect his appetite? Is there anything he can do NOW to ease any of the IMRT treatments? THANKS, in advance for any and all responses.
Lois & Buzz in NC

I am surprised that he is not getting an adjunctive chemo treatment being that he is stage IV.

I had IMRT with chemo so I can't say with certainty what to expect but I would imagine the the side effects will be a little less. So my speculation would be:

He probably won't notice much difference until week 2 then he will start feeling the effects of the radiation. He won't feel the radiation treatments while they are happening, just the after effects. He'll start on progressively stronger pain meds at this point. His hair will start to fall out that is in the immediate radiation field and it may not ever grow back (but it's mainly the neck anyway so it's just a little less to shave). His taste buds will start to be affected and he will start having some pain swllowing. Remember that all of the side effects can be managed. He will lose more weight as time goes on, typically, but in a few cases some patients on IMRT actually gain weight (at least that's what the manufacturer says). He will have to force himself to eat, as food won't taste very good for a fairly long while.

As far as what you can do now eat, eat, eat! Put as much weight on as he can. Get your meds ordered up for thrush, constipation, long term and short term pain, etc. and have them ready. Experiment with different liquid diets to see if anything appeals to him. He must stay hydrated - 2-3 liters a day.

The drug you mentioned is Amofistine. Gail has some tips for using it - it can be a difficult drug to tolerate. Usually with IMRT most salivary function will return anyway. It depends on where they are irradiating.

Lois, there are so many great and informative posts on this site about IMRT and the side effects, what to expect, etc. I worry that you are going to have alot of the old timers pass by this post because we've answered it so many times already! It's tough typing the same thing time and time again. So, I suggest doing a search on IMRT and then you can benefit from the advice that's been given to all the others over the years.
I wish you luck on this part of treatment, it is without a doubt the most trying.
Take care,
Minnie

Lois --

If you are doing a search for posts on that drug, Gary mistyped its name. The correct spelling is amifostine (it's marketed as Ethyol). Almost 190 posts mention amifostine and almost 90 Ethyol.

All the best,
Leslie

Thank you for that correction. If you Google it some institutions have mispelled it as well. Ethyol is probably the generic name.

http://www.upstate.edu/uh/cancer/mngpns.php

Hi. My mom was put on Ethyol and the only thing I can add is to make sure you let the RO and nurses know any and all side effects that Buzz encounters. Unfortunately, although we kept telling the RO and nurses that my mom was vomiting all day, they thought that if it was related to the Ethyol she should be vomiting right after the injection/treatment or shortly thereafter. In reality, my mom would not start vomiting until about 4 hours post injection and then would vomit at least 3-4 more times a day. Once she was taken off of the Ethyol it got SO much better. Other than that, just make sure he has tons of liquid. Someone responded to one of my posts with a GREAT explanation of how ethyol should be admistered, including the liquids, and I would suggest you read that. It was incredibly informative. Good luck! My thoughts are with you.

Hi, I tolerated amifostine well and had no side effects. I hope you have the same experience. I got it at every IMRT treatment except the last two because my blood pressure was too low. He should eat everything he can now and try to put weight on. I lost my taste and appetite halfway through but I didnt get really sick until two days after the treatments ended. But you can get through it. I did and I am doing great now. I finished my treatments almost 2 years ago. It took probably 6 months to get back to what I call the "new normal". Rainey

Amifostine can be a nasty drug to take, and a lot depends on following the Medimmune (drug manufacturer) guidelines *to the letter*. Many people manage to take it for some of their treatment, a few all the way through. My husband took it all the way through but was one of the few at Hopkins who did. As it was they never gave it to him on chemo days. And he said it was the worst part of the treatment. But...it worked!

The Medimmune guidelines --

1) 90 minutes before injection, take antinausea medication. We found that *only* one of the serious antinausea meds worked, which is to say -- Zofran, Kytril, Anzemet. The commonly prescribed Compazine did *nothing* for my husband, although for some people it apparently has worked.

2) Drink at least 16 oz. and better, 24 oz. of fluid starting 90 minutes before injection and finishing about 10 minutes or so before. This gets pretty hard as the mouth becomes more sore, also all that liquid in and of itself can cause queasiness. Folks on a PEG might actually manage better.

3) Nurse will take blood pressure (BP) and other vitals before administering the injections. And note, amifostine *by injection* now -- (they phased out IV delivery due to serious side effects in too many people, including severe BP drop and even a few cases of anaphylactic shock.) If BP is too low, I think the cut-off is 100, the injection isn't given.

4) Nurse also has examine sites of previous day's injections to look for local or (worse) generalized rash. The latter may mean an allergic reaction to the drug and thus it may have to be stopped.

5) After injection, there is a 30-45 minute "window" to receive the radiation. Need really good coordination between radiation techs and the radiation oncology nurse -- our nurse would walk down and make sure everything as on track re the machine, and the tech would walk up about 15 minutes later to confirm exactly when injection given and thus, when Barry had to go in for treatment.

The reason (at Hopkins at least) that many patients had to stop the Ethyol is because they developed a lingering nausea and/or the generalized rash. Our dental ocologist has done some studies with this drug for mucositis and he felt that taking it every other day gave about as good results both for salivary preservation and mouth sores. So this is an option to consider.

But be sure to get the good serotonin anti-emetic drugs as noted above -- my husband said they were expensive but worth every penny! Otherwise he feels he would not have been able to tolerate amifostine and probably would not now have such good saliva (and he also had less severe mucositis).

Gail

Thanks to each of you for your responses! Buzz continues to thrive after having surgery a little more than three weeks ago. His appetite is tremendous, he eats everything except steak, pork chops, etc..and has several Ensure or Boost 'snacks' during the day, along with ice cream and puddings.
He only limps a little, and I've noticed that his right shoulder slumps now. He has refused to use any assistance with walking, not even a cane!
Yesterday, a large scab finally fell off his upper leg, only to expose a very large STAPLE. He thinks it will eventually work itself out, but I'm not too sure abou that!
The scar on his neck (literally from ear-to-ear) is healing nicely; the majority of the swelling in his face and neck is gone, as has the swelling in his right leg.
Buzz has only taken 2-3 pain pills since coming home. He has, however, taken Advil, and says this is sufficient!
We hope to hear from the Radiologist this week, concerning beginning IMRT, but he was told by his Doctor at Baptist Hospital that treatment could not begin until after 08/23 when he is to see Buzz for followup appointment.
Thanks again to everyone! I hope that Buzz' positive story has helped to encourage anyone facing what he has endured these past few weeks. Blessings.....Lois & Buzz in NC