skp07,
You're husbands case sounds like mine, even the age. Mine was on the right side mid jugular, the radiation was concentrated in my throat from Tonsils to Larynx. Just get through each day. Focus on the goal, just get it done and over. Delay the patches if you can, they add a lot of complications when you try to get back to "normal". I finished radiation a year ago August 9, and my unkown primary is still, thankfully unknown.

Best Wishes

gdavies, Congrats on the remaining unknown!! Hopefully, we can say the same thing this time next year. Did you do chemo also? We did round 2 on Monday and he has been sleeping most of the time since then, except awake long enough to be sick and go back to sleep. The first round he breezed through so this has been another new experience for us. We also got a supplement to use the PEG tube as he is not getting enough calories to keep his weight up. He doesn't have trouble swallowing yet, just the taste.

Is there anyway you can stop radiation half way through if it is making you REALLY sick...I am about to start and I dont want to do it now I have read all of this. As if things arent bad enough...too much has been taken from me. Will I die if I dont have radiotherapy? There is no sign of the cancer on my tongue the RO just thought the margin was a little close for comfort. I am happy to go back every week if they want me to to check for it if thats what it takes! So...if the cancer does reappear, can I have radiotherapy then rather than now where there is none? Also Im very afraid it is a once only treatment...what if it does come back...or i get some other form of cancer?...then what? Removal of tongue completely? Then...I wont want to live anyway. By the way there is only one large cancer hospital in my city so where do i go for a second opinion? Help me. Are the Radiation side effects EVER not that bad?...or do you always lose the ability to taste/swallow/get sores/get burnt etc. Prayers and Love to the other fighters and survivors. Lyn

Hi Lyn,
The first half of my mom's treatments went relatively well. I honestly think it was the brachytherapy that made her mouth so sore. Through the inital treatments of IMRT and Erbitux she did fairly well. She had some issues with the mucus, tussionex, a prescription helped that, she had some sore tongue issues but the oral balance products, sodium chloride water and lidoccaine aided her through. As for hair loss, she did lose a little through the back corner of her head where the rads exited. She really didn't lose a lot, it kind of thinned out some, but it has already grown back! My mom's RO did say that if it ever returned her could use rad again-on her, but just today I read on the recurrence forum Pandora said the same.
Oh, my mom has never had any problemwith swallowing, her taste was altered for a few weeks, but it is now back full strengh. Aquaphor works well on the burns, at least for the Erbitux rash.
Lyn, I think it's in your best interest to go for it, and think POSITIVE! Don't let the negativity take over, fear is such a tool that will rule all of your thoughts. You can do this!
Best of luck to you.
Donna

Lyn,

No you shouldn't stop the Tx half way or 2/3rds way or even in the last week. The more we learn about this cancer the more Tx plans are being designed to deliver as much rad as fast as our bodies will tolerate it, Some centers have experimented with double the dosage in half the time and some are doing the rad Txs twice a day instead on once. The idea being to deliver as much killing power as possible while trying to minimize damage to us. Remember the goal is to survive and beat this cancer that will kill us unless stopped.

Now most will tell you that everyone CAN react differently to the Tx and I have talked to a few that breezed thru it but they are rare. Most of us get thru the majority of the lenght of Tx without too much trouble. The few weeks post Tx seem to be the worst for most of us. One BIG key to getting thru this Tx is to keep your body hydrated (drink at least 48 ozs of water each and every day) and eat at least 2000 cals each and every day. Don't fall behind thinking you will make it up tomorrow cause you won't and once you fall behind, problems will start to compound themselves as a snowball gathers more snow rolling down hill. Also don't hesitate to take enough pain meds to make you feel like hydrating and consuming those cals. Also don't hesitate to damand attention when you need it.

You haven't mentioned who will be your caregiver? They would benefit from this site as well.

Chin up....we will get you thru this if you just listen to what we say.

Thanks Donna and David...i think i just get really scared when i read about lots of people on here who have had serious 'permanant' problems after radiation...like teeth loss/decay, hair loss, permanantly scarred and/or burnt face, loss/change of taste, loss of saliva glands, inability to eat salty or spicy foods, skin sensitivity...etc etc...if i were to get even two of these things for life when at the moment i am told I dont have cancer as they got it all, i dont see the point...I was told by the doctors who did the operation I probably wouildnt need rad therapy, then when i get to the cancer clinic one RO makes a new decicion that I will need it...and within a week or so. I have had NO time to let this sink in and I am so afraid...not of dying, of how much more of my quality of life will be affected (i was a singer/musician..im not either anymore) I am told they are just giving me the radiation as a precaution due to close margins or the tumour to the edge of my tongue. Why didnt they take more if we are talking in mm?If i were to get checked every month or so, would this not be as good a a precaution? in other words then, if the cancer returned (and i was likely to die) could i have the radiation then or would it be too late? My RO looks at me as if i am nuts when i tell him i am afraid of the therapy (like "of what?" and "why theres nothing to it!") I just wish I had just ONE doctor that had experienced radiation to REALLY know what I (all of us) fear. I am so scared. I really appreciate your help thank you. Please dont think i am taking this lightly or I am a coward...I just feel like my life has already been compromised enough...do i really want to risk losing any more? My husband is caring for me and he is home all of the time as he is a returned soldier (oddly enough I am his carer as he has PTSD from serving in Timor) So we care for each other now. He knows the frustration of not being 'yourself' just in a different way I guess. He doesnt let me sulk for too long though haha. thanks again...please if you have time let me know what you think. love from Lyn

Lyn,
I am certain no one here thinks you are a coward, or thinks any other negative thoughts. I was taught this years ago, "Feelings are neither right, nor wrong, they just are."

You may want to begin this again under your own topic so it doesn't get lost. There are so many here who are fantastic and have so much knowledge to share.

Take deep breaths and ask lots of questions.
Feel free to e-mail me anytime.
Take care,
Donna

Hi Lyn,

You can read all kind of different experiences from treatment on this forum.

In my case, it went pretty well (you can check some of my past threads to get an idea).

I am 14 months out of treatment, and:

1. I have fairly good saliva, and it still seems to be improving (I did have daily Ethyol shots for this).

2. My taste is virtually 100 percent back to normal.

3. I did not lose much weight during treatment, butI hvae gained some weight recently.

4. I did have lots of sores, and other issues during treatment, but with good communication with my team these were addressed in a (reasonably) satisfactory manner during treatment.

5. The treatment was pretty mortifying at first, but it became a routine after a while - and familiarity helps fight fear.

6. I take very good care of my teeth. I always brush after eating anything, I use floss and toothpicks for my gums, I use flouride trays twice per day. I have not had any teeth problems of any kind to date.

7. After treatment, I started to use a vitamin E cream on my neck and dissection scar - my wife says she doesn't notice them. There is numbness and tightness due to the dissection (and in the case of my jaw, due to the radiation), but I started doing daily stretches (including for my jaw) during treatment (and still do to this day) which has helped immensely.

8. I lost beard hair and some hair on the back of my head and neck. I lot of this has recovered - no one seems to notice, although the new hair on thinner and finer.

9. I truly feel great, and I'm probably healthier than at any time over the past 30 years.

I hope this helps.

Best wishes,

Chris

Lyn, Your concerns about radiation are well founded. It is a very dynamic treatment and truly can cause some long term issues. BUT, its darn effective against cancer and it can do things no other treatment can do. I lost a few things to the ray gun, but I am here to talk about it. The whole "new normal" discussion comes in here, and we all have had to adjust to changes. But it isn't much more than just the changes of getting older and a bit stiffer here and there.

The treatment is tough, the effects are sometimes startling, but its only for a while. You have to fight hard and fight aggressively to beat this beast. Weekly check ups will NOT find this disease if it comes back. Only the scans and lab work can find it. There is life after cancer (and after radiation) Lyn and yours is waiting for you. I have had several years without doctors and waiting rooms and needles and drugs. We are with you Lyn, Tom J

Thanks Everyone...ok so you think I should take the risks and have the radio...I do want to live...i am just really scared of having NO taste or NO saliva after treatment (the hair thing really doesnt bother me..I wear hats and scarves anyway and vanity and death arent related here to me. Also, the temp stuff doesnt bothe me either...its really only the permanent things. One thing..,my teeth..they are good now (well they are straight and white and the ones I had to lose were at the back on one side so i can live with that...but...how does it effect them even if they are strong?...and does it always? thanks again...and by the way i will get the hang of starting my new posts haha I can see what you mean..thanks for the tips! you are all so great
love from Lyn
PS Hi Chris, just wondering, did you have radiotherapy too?(i am guessing you did)I am not farmiliar with Erbitux, Cisplatin or Ethyol, are they chemo drugs? Pardon my ignorance. Im so glad you are doing so well!! good for you!