Hello All, Have'nt been on site for ages, so hope you are all better than when i was last here. Since then my brother who has stage 3 cancer, which is in lymph node behind his nose, and it is in the back of his head, He has already had the op to remove his gums and roof of mouth and lymph nodes in his neck. What i dont understand is he was told he needed 6 weeks of radiotherapy, which he is on the last week, and today he was told he needs an extra week making it 7 weeks. But they have'nt scanned him and they say they wont know anything untill they scan him a few weeks after the treatment, this is because they say the radiotherapy is still working for sometime after the treatment has finished. so how do they know they need to give him more. Can they tell by blood tests cos he has one every couple of days. Can anyone give any advice on this.

Cazz, I think they usually go by the amount of RAD's given to a particular area. Sometimes they will add another week of concentrated radiation to reach the maximum dose to a certain area.

Had the same thing, basically, neck and mouth irradiated for 6 weeks, then evaluated as to how well I took the radiation, and a "booster" week on 7th week just to the neck.

I wouldn't get real concerned, seems nothing is written in stone with these treatments, the need for the booster week probably is a result of mathematics rather than anything going on physically with your brother except possibly he is tolerating the radiation well.
Bob

Typically, the baseline scans (CT, MRI, X-ray,etc) will be done 4 or 5 weeks after the ending of radiation treatment. I do not know what the role the blood test would play here.

Cazz, in my case I was initially scheduled for six weeks of radiation and then when I was nearly finished with the original dose, I was told that I needed six rounds more focusing on the left side of my neck only. There was no scanning during the treatment and my oncologist explained that the increased dose was essential as a further boost. At that time my neck was already severly burnt and bruised and I hesitated to have the extra dose. But my oncologist was firm and reassured me that I could stand it. So here I am without regret that I took my oncologist's suggestion finally. Your brother's doctor is right that the radiation takes some time to show its effect on the tumor.

Karen,stage 4 tonsil cancer diagnosed in 9/01.

Hi Cazz, The same thing happened for my husband. He was just about at the end of his radiation treatment, and his neck was as raw as you could possibly imagine. The last week of the treatment, they decided to concentrate moreso on the base of the tongue and not the neck area. The tumor in his lymph nodes had responded very well so far at this point, and they wanted to give that extra "shot" at the tongue where that nasty culprit started in the first place. So in my opinion, this is not unusal what they are doing for your brother. I know it's a lot to go through, and it tore at my heart to see Johnny in so much pain with his neck being raw and this throat and mouth the same way. But in the long run - if it does the good that it's supposed to do, it certainly is worth it. I hope your brother knows that we are all pulling for him and wish him the best for a speedy recovery! I hope you are taking care of yourself as well - the treatments, the stress, and all of it general can sure take it's toll on a caregiver. But be strong - I know your brother can get through this- things will get better in time!

I hate to say it but the state of the art in cancer treatment today is still: slash/burn/or poison.

Thankyou so much all of you, You put my mind at rest so much. My brother is still in hospital, but he is doing well. His face is very swollen and his saliva is thick. He had his peg put in today.

Cazz, as long as your brother is doing well - that's as good as anyone can ask for under the circumstances. Keeping you both in my thoughts and wishing all the best to your brother for a very speedy recovery.

Hi, This is my first time here. I have stage (111-1v) sqamous cell cancer on the tongue, and in the lymph behind or by the right thyroid. Plus there is a question about the lymph system onthe right midstruem. As you can tell this is also my first introduction to doctors! My parents are 91 and have been married 70 years. The last time my Mom saw a doctor was 46 years ago when I was born. I come from very healthy stock, as they say. I have been to walk-in clinics for colds, boils and a few accidents but this is a new and scarey world. PAIN!!!
I have had 51 of the 70 radiation treatments. The oncologist (3) to be exact said chemo would kill me right now, so that did not sound too inviting??? They thought about a PET scan but said with my rowdy history all the upcoming arthritis would show so they decided 70 radation treatments and then 18 months of WWOS= wait, watch, observe, and see which I do not understand at all. I am not sure this is where I am supposed to ask this question but I am new to the computer, internet and this site so please anyone who can guide me I would apperciate it. If you email me mention oral cancer site so that I will open the email, thanks.
My questions are:
I have 19 treatments to go, my mouth and throat burn so much I cannot eat or drink for the past two weeks, in other words very raw. The doctor decided to give me a break for a few days, my tongue now looks like it is blistering in other places they are white blisters. Is this spreading cancer or is this from the radation treatments?

The side-effects have not actually been explained to me no mattter how many questions I have on my list for the doctor. Is this a side-effect, but I am wondering if the break will do more harm than good. I am suffering but I will suffer anyway so does the break make a difference?

How do you control the pain? If I take two pain pills I sleep and then wake in massive waves of pain. I only sleep two- or three hours at best. If I take only one pill I stay in pain. The valuim help but wear off in half the time between dosages. The percot puts me to sleep or does not touch the pain? The magic-mouthwash works for about 5 minutes? Any suggestions???

The inside of my lip is bleeding and stick to the gus so I tear them apart each day and try to keep them coated with aqupohor. My tounge has new blisters as does the roof of my mouth? Is this all normal? How long after radation before I can eat? Has anyone else been told about this 18 months of WWOS? Please someone answer me I will try to get back to this page so I can read your reply's I will try my best as somedays I don't think I will see the next.

Thank you in advance for your help.
Jon

Jon,
I can't really answer any specific medical question; I just wanted to let you know I am am so sorry you are in such pain. Have you been eating at all? They can put a tube in your stomach to get some food in you that way. I would continue to hound the doctors for help and advice. It sounds like you need it.
Good luck to you.
BC

Hi Jon, My husband (John) went through a lot of what you are going through now. He has stage III squamous cell carcinoma at the base of the tongue. Diagnosed (officially) as of 8/13/02. He went through and finished radiation treatments as of 11/29/02 - but during the months of October and November, his mouth, throat, tongue and neck were as raw as you can imagine. It was very difficult for him to swallow anything - even most liquids were painful. On top of all this, he had (and still has) many mouth sores. He managed to drink mostly chocolate milk and melted down ice cream, and some chicken noodle soup with the very thin noodles in it. (Mrs. Weiss's brand). But even the simplest of things - like drinking plain ole' water would oftentimes cause him to grimace in pain. So it sounds like what you are going through seems fairly routine. But I think in your case, you may want to look into getting the PEG tube to see that you are getting enough calories and nutrients, which I think you are not getting enough of as it is now. This is definitely something to discuss with your doctor. I can tell you from observing my husband that going through the radiation treatments was pure hell for him, and even afterwards - there is still many things to contend with, such as thick mucous and phlegm, dry mouth, persistant mouth sores, etc. I wish you all the best, and please talk over your concerns with your doctor(s) and caregivers as well. Let us know how things are going for you - but these things take A LOT of time before there is any "relief" it seems - so you gotta be patient and strong - but they will indeed get better as time goes by. Good luck!

John, sorry to hear your suffering.70 rounds of radiation is indeed a lot. Did your doctor mention the total dose? I think the doctor gives you a break on seeing the immense pain you are suffering. He should know what is the best for you and explain to you the possible side effects you have to cope with and the pros and cons of breaking the treatment for a few days. I am over a year after treatment and the mouth sores are still there but eating is not much of a problem now. The picture you describe is pretty normal to those receiving intensive radiation. Get your doctor to clear up any queries you have in mind.

Karen ,stage 4 tonsil cancer diagnosed in 9/01.