Hi Bill,
I did not have IMRT radiation but the salivary glands on my "good" side were spared so dry mouth is an issue, but a small one that get's better as time goes on. I asked my doc about IMRT one visit and he said that is used on certain types of tumors, ones that the docs KNOW is contained to one certain spot so they can focus the radiation on that spot only. He said the chances of undetected mets to the lymphnodes is somewhere around 20-25% and that IMRT can't be given to an area if a doc doesn't know there is cancer in that particular area.
If I were to have IMRT I suspect I would push for a neck disection to make sure there was no cancer in my lymphnodes, that is the only sure way to tell.
Good luck with it,
Minnie

Is IMRT the 3d rad? My Mom is on her 4 week of having it daily with one week of chemo behind her and she has really bad mouth dryness and unbearable mouth sores. How long will the mouth sores last? She can't open her mouth too wide with out it bleeding. After her 4th week of rad she is going to get the double rad treatments daily for 2 weeks. This worries me since she is already in so much pain. Any thoughts?
Tami

Tami --

The radiation team should have discussed and had a pain-management program in place for your mom beforehand. She has the right to be without pain, and they need to get on the stick to help her -- at least as much as is possible. What [ain meds is she getting? Does she take them regularly (if she waits until it hurts terribly it is really too late). She made need the Duragesic patch or even morphine mouthwash. GelClaire is supposed to relieve mouth pain in many patients. The mouth sores will only get worse without treatment and they also need to be sure she doesn't have an infection (thrush, herpes, bacteria) which requires appropriate and immediate medication.

I really think it's awful how little seems to be done for some of the people on this forum re management of side effects and pain -- so you need to be your own advocate and demand attention if you are not getting it. True there is no magic bullet for some of these things but there are available things that can help a lot of people.

Gail

Bill, This note is because of some confusing comments in some of the above posts. It is true that some cancer cases are not best handled by IMRT. If your RO says you can have IMRT then I would always trust that they know more than any of us. (Likewise if all of the professionals said you could not get IMRT then that would be for good reason.)

In your case it sounds like the best RO says IMRT will work for you and most of us non-professionals think you'll be better off with IMRT.

Hi Bill,
Have you asked your RO why he will do IMRT only if you want him to? Does he have any particular reasons for wanting to do XRT. Cathy makes good points when she says that some tumors, while they can be treated with IMRT, can be treated BETTER with XRT. Brian wrote a post awhile back concerning it that made great sense, maybe you can find it.
I hope you can end up with IMRT, it seems to cause less side effects in the long run.
Minnie

Bill, I just wanted to add my 1.5 cents worth ;P

This is such a popular topic, and sometimes, I think people who have had the XRT in the past might be hurt by our dissing it, so when I asked this question, it created a fire storm of posts.

I decided to forgo a drug I really wanted to try ("Erbitux") but can't take it with IMRT, so I decided to do the IMRT vs. XRT based on the opinions of dozens of well versed health professionals and fellow cancer survivors.

It works the same with XRT vs. IMRT but the trials are for some reason written for use with XRT! (I met with the VP of R&D and he has a reason for this, but I don't want to get off topic for you here)

Anyway, I would PUSH HARD for IMRT "IF" it is compatable with the treatment plan.

Don't let one Dr's personal hangup, ignorance, old school thinking, or propensity for novel therapies even; be the ultimate decision trigger for YOUR health care.

:-)

Gail-My Mom was hospitalized on Monday from the pain, mouth sores, low whites and fever. They did give her treatment for thrush. As far as pain meds go, they claim that this (all of the horrible side effects) happened alot sooner than they expected. Her Rad dr. said he doesn't generally see patients get this bad until the final two weeks of the double rad per day. So she certainly was not prepared for things to go this bad so soon. They think the chemo is the main culprit. I requested that she ask for the fentanyl patch since she can barely swallow anything. They did give it to her and she also has another pain med in a pump at the hospital. She is using it in conjuction with the patch. She is really out of it now. I live in NY and she is in TX so it is really challenging to advocate for her. I am trying to do my best but I still feel like I am missing alot. I plan to call her chemo dr. tomorrow and will ask him to send her home with the morphine mouth wash. Thanks for the idea! Will the mouth sores stay until all treatment is over? She also started to getting bloody noses. Is that normal? Tami

She will continue to have or develope more sores in her mouth for about a month post rad tx I am sorry to say. I am glad they did something for her discomfort, Mine too went downhill as soon as I had my first chemo. I never did get a bloody nose and that needs to be brought up with the Dr. ASAP. Good luck and continue to be there for her, she has a long hard road to go down

Hi Bill,

Each of us has different effects from the chemo and radiation. I had 5FU and it distroyed my mouth and then the radiation kept my tongue and mouth in constant pain. I had to use the peg tube from my first week of treatment and for the next 3 1/2 months. Mucusitis is a normal reaction to the treatment. they gave me morphine and oxycontin which I could take as I needed. I'm not sure if the side effects would be less.

When I finished, the ENT gave me Evoxac (sp). It really helped in the saliva area. I don't take it now and my saliva flow is SLOWLY coming back.

Steve

Bill
I live right down the road from you and was treated at Moffit. It is a confusing time understanding which treatment and the docs don't seen to know until they do all the set up diagnossis and scanns. So hang in there, Moffit is excellent and you will be in good hands which ever way the treatment goes. You do have to ask questions to pull out of them their logic so remember that when you see them.