head and neck radiation therapy. options?

lyolan1

Hello Cancer Fighters/survivors,
I just met with my radiation oncologist today and got some disturbing news, maybe I am over reacting. She told me that I would be recieving radiation on both sides of my neck and subsequently would no longer have any salivary glands left because the radiation would make them useless due to the amount and strength of the radiation.
1. Is it the normal course of treatments to have the radiation on both sides of my neck even though I had a left neck disection/left lymphnodectomy and left tonsilectomy? Has any body only had radiation on the affected side of the neck?
2. What is life like with no salivary glands? Bio-teen for life? Poor dental hygene?Dry mouth for life?
3. Has anybody's salivary glands recovered?
4. HPV-16 cancer is so new and so little is known about it that it seems like the doctors are over proscribing medical treatment, it has been intimated that, in five years, the doctors will look back and say "Wow, we put those poor people thru hell with those draconian treatment protocols".
5. Has anybody out there done a scaled back approach to the radiation that saved at least one side of the salivary glands? Since HPV-16 responds so well to treatment? Or am I stuck with a B-52 carpet bombing campaign? Lets wipe out the whole coutryside to get an enemy holed up in a tiny village!
6. Am I freaking out over nothing?
Alex.

lolojldunn

Head and neck radiation
Hi Alex,

Just read your post regarding radiation treatment on both sides of your neck. I don't know that you're freaking out over nothing. I can certainly appreciate your concern regarding the "carpet bombing" approach.

My personal issues were on the right side. The tonsil and a great deal of the surrounding tissue were removed. I had two radiation treatments a day but they were both on the right side. I was given Amifostine (sp) daily in an effort to save my salivary glands. I can't honestly tell you how successful this treatment was. I fight the dry mouth issues that most of the Survivors on this site have fought and are continuing to fight. How bad would it have been if I wasn't given the Amifostine? Good question. Don't know that I'd like the answer.

I haven't heard of the radiation treatment to both sides of the neck. I'm certainly no expert nor due I porport to possess a great deal of knowledge regarding all aspects of cancer treatment. Just like everybody else, I had to rely on the expertise of my medical team. I did have complete trust in their approach to my treatment plan. Had they suggested treatment to both sides of my neck, I would have wanted to know why???

Alex, I'm wishing you the best. Please keep us posted as to how your treatment is progressing.

Take care,

Jim

lyolan1

lolojldunn said:

Head and neck radiation
Hi Alex,

Just read your post regarding radiation treatment on both sides of your neck. I don't know that you're freaking out over nothing. I can certainly appreciate your concern regarding the "carpet bombing" approach.

My personal issues were on the right side. The tonsil and a great deal of the surrounding tissue were removed. I had two radiation treatments a day but they were both on the right side. I was given Amifostine (sp) daily in an effort to save my salivary glands. I can't honestly tell you how successful this treatment was. I fight the dry mouth issues that most of the Survivors on this site have fought and are continuing to fight. How bad would it have been if I wasn't given the Amifostine? Good question. Don't know that I'd like the answer.

I haven't heard of the radiation treatment to both sides of the neck. I'm certainly no expert nor due I porport to possess a great deal of knowledge regarding all aspects of cancer treatment. Just like everybody else, I had to rely on the expertise of my medical team. I did have complete trust in their approach to my treatment plan. Had they suggested treatment to both sides of my neck, I would have wanted to know why???

Alex, I'm wishing you the best. Please keep us posted as to how your treatment is progressing.

Take care,

Jim

radiation options
Hi Jim, Thanks for getting back to me. I hope all is well with you. How long ago did you get treatment? You had cancer in your tonsil and lymphnodes? Radiation onright side only? Are your salivary glands on the left side okay? Jim I want to live just as much as the next person. If I go ahead with the treatment that they have outlined I will live. I want to know if there are alternative treatment methods, ones that solve the problem and limit my long term symptoms, symptoms I just learned of today. Today's appointment really got me riled up. Alex. What about quality of life? How bad is the dry mouth?

ljoy

Radiation Therapy
Four years out from right tonsil cancer. 39 rads 3 rounds cisplatin. I did have surgery to remove both tonsils and one lymph node on the right side.

The IMRT radiation machine rotates around your head and neck delivering radiation from different angles into the affected area. Thus you will get damage to tissue and salivary glands on both sides. I would estimate my saliva at about 60% of original. I have learned to eat a lot of slippery foods, pasta, gravy, etc. I also use water to add moisture to food for swallowing. Milk with pastries. There are some drugs that help produce saliva. You will see on this site that it works for some and not for others. It does work for me.

My tongue and throat are sensitive to spices but other than that I'm very healthy and very happy to have won the battle. There is lots of support here and through the cancer family to help you through it. Your medical team is very important and you will need to comitt to do nothing but concentrating on getting yourself through the treatment.

It is important to follow the recommendations for hydration, nutrition and other procedures required for treatment. You will need to decide if you want a feeding tube (PEG). My opinion is it is better to have a PEG and not need it than to need it and not have it. It is much more difficult to get a feeding tube midway through treatment because of the condition of your throat. I did not take the medicine that helps prevent damage to the salivary glands.As stated, I do have decent saliva now.

Hope this helps. My best to you for successful treatment.

lolojldunn

lyolan1 said:

radiation options
Hi Jim, Thanks for getting back to me. I hope all is well with you. How long ago did you get treatment? You had cancer in your tonsil and lymphnodes? Radiation onright side only? Are your salivary glands on the left side okay? Jim I want to live just as much as the next person. If I go ahead with the treatment that they have outlined I will live. I want to know if there are alternative treatment methods, ones that solve the problem and limit my long term symptoms, symptoms I just learned of today. Today's appointment really got me riled up. Alex. What about quality of life? How bad is the dry mouth?

Radiation Options
Hi Alex,
I'm two years post treatment, yesterday, August 16th. My primary was in my right tonsil. I don't know if the Doc took any of my lymphnodes. He didn't tell me and I didn't ask. I was told that he took a "considerable amount" of tissue around the tonsil. At that point in time I was petrified by the cancer diagnosis. He could have told me that he took out my spleen at the same time and I wouldn't have paid a great deal of attention to what he said.

Cancer is not a death sentence Alex. It's a major life changing event that none of us ever wanted. But everybody here survived. You will too. It's not for sissies! It will make you reach down inside for strength and courage that you didn't know you had. But I assure you, you WILL find it. We all did.

My salivary glands on the left side function normally. I still use several of the Biotene products. New found habits are harder to break than old ones...Dry mouth is a minor problem that I'm willing to live with. I drink more water now than I ever did. It's ok with me.

I think that the quality of my new post cancer life is probably better than the old one. I've since learned that I not immortal. I have a new appreciation of every day that I'm blessed with. Colors are more vibrant. Life and Love are more important to me now than they ever were. I notice several things around me that I previously took for granted. I'm back to work full time and have a new appreciation for my work.

One of the things that is very important to me is the relationship that I built with my eldest Granddaughter when I was going through treatment. She would sit with me and read me jokes that she got off of the internet. Some were real corny. Others made me laugh until my sides hurt. This exercise taught how important humor and laughter really are.

If you get the chance Goggle Regina Brett on the internet. Regina is a newspaper reporter from Ohio. She's also one of us, a Survivor. She put a list together of fifty of the most important things in life on her fiftieth birthday. Those things have also become very important to me. My son give me the list when I was going through my treatment. It helped me immensely.

Alex, I'm hoping that I offered you some hope and understanding. You will get through this battle.

Take care my Friend,

Jim

lyolan1

lolojldunn said:

Radiation Options
Hi Alex,
I'm two years post treatment, yesterday, August 16th. My primary was in my right tonsil. I don't know if the Doc took any of my lymphnodes. He didn't tell me and I didn't ask. I was told that he took a "considerable amount" of tissue around the tonsil. At that point in time I was petrified by the cancer diagnosis. He could have told me that he took out my spleen at the same time and I wouldn't have paid a great deal of attention to what he said.

Cancer is not a death sentence Alex. It's a major life changing event that none of us ever wanted. But everybody here survived. You will too. It's not for sissies! It will make you reach down inside for strength and courage that you didn't know you had. But I assure you, you WILL find it. We all did.

My salivary glands on the left side function normally. I still use several of the Biotene products. New found habits are harder to break than old ones...Dry mouth is a minor problem that I'm willing to live with. I drink more water now than I ever did. It's ok with me.

I think that the quality of my new post cancer life is probably better than the old one. I've since learned that I not immortal. I have a new appreciation of every day that I'm blessed with. Colors are more vibrant. Life and Love are more important to me now than they ever were. I notice several things around me that I previously took for granted. I'm back to work full time and have a new appreciation for my work.

One of the things that is very important to me is the relationship that I built with my eldest Granddaughter when I was going through treatment. She would sit with me and read me jokes that she got off of the internet. Some were real corny. Others made me laugh until my sides hurt. This exercise taught how important humor and laughter really are.

If you get the chance Goggle Regina Brett on the internet. Regina is a newspaper reporter from Ohio. She's also one of us, a Survivor. She put a list together of fifty of the most important things in life on her fiftieth birthday. Those things have also become very important to me. My son give me the list when I was going through my treatment. It helped me immensely.

Alex, I'm hoping that I offered you some hope and understanding. You will get through this battle.

Take care my Friend,

Jim

radiation/ options
Hi Jim, Thanks again for getting back to me. This site is very good and suppottive. I guess that I was under an impression that the cure was brutal but doable. Once treatment stops, your recovery begins. The "long term issues" were not discussed in detail. Today's appointment discussed it in detail, in rather stark terms, with the worst case scenario's. My teeth are in good condition, I have always taken good care of them. How did your teeth fare in the treatment? How long did you have to use the peg tube? Any trouble with your jaw? Alex.

lyolan1

ljoy said:

Radiation Therapy
Four years out from right tonsil cancer. 39 rads 3 rounds cisplatin. I did have surgery to remove both tonsils and one lymph node on the right side.

The IMRT radiation machine rotates around your head and neck delivering radiation from different angles into the affected area. Thus you will get damage to tissue and salivary glands on both sides. I would estimate my saliva at about 60% of original. I have learned to eat a lot of slippery foods, pasta, gravy, etc. I also use water to add moisture to food for swallowing. Milk with pastries. There are some drugs that help produce saliva. You will see on this site that it works for some and not for others. It does work for me.

My tongue and throat are sensitive to spices but other than that I'm very healthy and very happy to have won the battle. There is lots of support here and through the cancer family to help you through it. Your medical team is very important and you will need to comitt to do nothing but concentrating on getting yourself through the treatment.

It is important to follow the recommendations for hydration, nutrition and other procedures required for treatment. You will need to decide if you want a feeding tube (PEG). My opinion is it is better to have a PEG and not need it than to need it and not have it. It is much more difficult to get a feeding tube midway through treatment because of the condition of your throat. I did not take the medicine that helps prevent damage to the salivary glands.As stated, I do have decent saliva now.

Hope this helps. My best to you for successful treatment.

radiation/options
Hi Ljoy, Thanks for getting back to me. I reallly appreciate it. I guess that I am a little freaked out by the way the "long term" scenario's were delivered. How long did you have to use the peg tube? How were your teeth before the radiation? After? Did you get radiation on the opposite sdide of surgery? Alex.

ljoy

Radiation
Teeth were good. I did have some bone protrusions removed from the lower jaw bone before treatment. Since treatment I get a cleaning every four months instead of six and use extra floride since the saliva is reduced. Good oral hygene is a must during and after treatment.

Radiation was on the same side as surgery. The cancer was in my right tonsil. As I recall the IMRT machine stopped in 7 or 8 places as it rotated around my head delivering the beams of radiation.

ljoy

lyolan1 said:

radiation/options
Hi Ljoy, Thanks for getting back to me. I reallly appreciate it. I guess that I am a little freaked out by the way the "long term" scenario's were delivered. How long did you have to use the peg tube? How were your teeth before the radiation? After? Did you get radiation on the opposite sdide of surgery? Alex.

PEG tube
I kept the PEG for two months after treatment. I wanted to be sure I could drink enough and eat before I had it removed. It was not a problem for me. I used it starting the third week of treatment. I had it from June until November. Treatment was July through September.

lolojldunn

lyolan1 said:

radiation/ options
Hi Jim, Thanks again for getting back to me. This site is very good and suppottive. I guess that I was under an impression that the cure was brutal but doable. Once treatment stops, your recovery begins. The "long term issues" were not discussed in detail. Today's appointment discussed it in detail, in rather stark terms, with the worst case scenario's. My teeth are in good condition, I have always taken good care of them. How did your teeth fare in the treatment? How long did you have to use the peg tube? Any trouble with your jaw? Alex.

Radiation/options
Good morning Alex,

Ljoy offers up sound information that I overlooked. When you are going through the radiation treatments the machine does rotate to radiate the targeted area from different angles. In my case, I think that the majority of my exposure was on the right side of my neck as that is where I experienced the burning. The radiation dept.staff that I worked with were absolutely awesome. They provided great advise regarding "burn" treatment and did a wonderful job of trying to alleviate my fears.

You're right. In my case, I thought that the treatment was indeed brutal. Matter of fact, my radiation Doc who I have had the good fortune to know on a personal level, was brutally honest with me. She stated that she was going to "kick my butt". She lived up to that statement...About half way through my "two a day" and weekly Cisplatin, I got sicker than a dog. She give me a week off to "heal up".

I had the PEG tube and port installed before the marathon begin. I used the tube for a couple of months after my treatments ended. Your throat is going to be sore. Keep trying to shallow. You don't want those muscles to atrophy.

My teeth were in great shape prior to starting treatment. My dentist made me two set of tray's. One was thicker that I used during my radiation treatments and the other was used for floride treatments in the evenings. My last check-up showed my teeth to still be in great shape.

I didn't experience any jaw problems to speak of. I have TMJ that's been a problem for many years prior to cancer. I've learned to live with it.

Take care Alex,

Jim

lyolan1

ljoy said:

Radiation
Teeth were good. I did have some bone protrusions removed from the lower jaw bone before treatment. Since treatment I get a cleaning every four months instead of six and use extra floride since the saliva is reduced. Good oral hygene is a must during and after treatment.

Radiation was on the same side as surgery. The cancer was in my right tonsil. As I recall the IMRT machine stopped in 7 or 8 places as it rotated around my head delivering the beams of radiation.

radiation/ options
Hi ljoy, Thanks again for getting back to me. It sounds like you are doing well and I am happy for you. If I understand you correctly, you still have your salivary gland on your left side and is functioning properly. Is there anything I can do to protect the salivary glands durring radiation? The doctor wants me to do radiation on both sides and the rads will effectively kill the salivary glands. Did you use a peg tube? If so, how long? Alex.

jkinobay

lyolan1 said:

radiation/ options
Hi ljoy, Thanks again for getting back to me. It sounds like you are doing well and I am happy for you. If I understand you correctly, you still have your salivary gland on your left side and is functioning properly. Is there anything I can do to protect the salivary glands durring radiation? The doctor wants me to do radiation on both sides and the rads will effectively kill the salivary glands. Did you use a peg tube? If so, how long? Alex.

First order of business
Did not read the entire post chain, but if not already mentioned, you need to ask if your Rad Oncologist offers IMRT (Intensity Modulated Radiation Therapy). If not, I would seriously think about looking for it. And, if you are already to receive IMRT then the person that told you you would lose your salivary glands is, in my opinion, way off target.

Think of it as precision zapology if you will. In my case, in each of 35 sessions, I laid on a narrow table which raised me up so that the IMRT could rotate 360 degrees, usually in a counterclockwise fashion. It would stop in 6 "zones" on each side, total of 12. Average duration of each zone shot was between 10&15 seconds. Then it would move to the next zone. As a reminder, my cancer was left tonsil only but I received equal treatment to all 12 zones and all the way around including lymph node areas on the back of the neck (which is why when you start the emu oil or whatever emollient you use you need to use it all the way around and out from the nape of your neck 2-3 inches). The purpose of IMRT, among others, is to focus the treatment on precise areas (within 1/2MM each time which is the purpose of the mask for locking you in the exact same position each time). With this precision delivery they are able to salvage a lot of the "good" tissue that is not likely to be cancer bearing (i.e.: saliva glands). So, in my case, I never completely lost my saliva. It went down to probably 10% production but is now (almost 2 yr later) at 90% or more.

So, don't despair. Demand IMRT and ask to see their computer profile for each shot, how many shots, duration of each shot, etc. Of course ask specifically if they plan to salvage as much of the saliva glands as possible.

Another note, there are drugs available that are supposed to minimize the impact on the saliva glands (Amifostene, for example). My Chemo Doc and Rad Doc both advised against it saying the side-effects (nausea) were probably not worth what they perceived to be a minimal benefit. So I elected not to take them and I did just fine.

I know others have had good luck with Amifostene and that is fantastic. Just my opinion and experience. Don't shoot the messenger.

Git ur dun.................JK

jkinobay

lyolan1 said:

radiation/ options
Hi ljoy, Thanks again for getting back to me. It sounds like you are doing well and I am happy for you. If I understand you correctly, you still have your salivary gland on your left side and is functioning properly. Is there anything I can do to protect the salivary glands durring radiation? The doctor wants me to do radiation on both sides and the rads will effectively kill the salivary glands. Did you use a peg tube? If so, how long? Alex.

PEG Tube
Dude................get the PEG. Read my post "PEG Tube Use and Care 101".

Trust me................you will be very glad you did even if you never need it. Think of it as insurance against dehdration and malnutrition.

GET IT...........GET IT.............GET IT

JK

PS: GET IT!!

jkinobay

On the contrary.....HPV16 Positive HNC's
They are very common and are being understood better all the time. Turns out, according to my sources, that SCC is one of the more common, less-aggressive and best understood forms of the Monster. And, now that they are absolutely sure that HPV positive SCC responds so much better to treatments, I would say you should thank your lucky stars that this is the one you have. My Docs all said the same thing......If you have to have cancer, this is the one to have because they know more about it, it is less-aggresive, and it has a much higher 5 year survival rate.

JK

PS: no such thing as freaking out over nothing. That's the human part of us. But, the way to control your "freaking" and to minimize it is to ask questions until you get the answers you seek.......whether of your healthcare pros or here at the CSN with all of the wonderful, compassionate, experienced folks.

BeenThereDoneThat

jkinobay said:

On the contrary.....HPV16 Positive HNC's
They are very common and are being understood better all the time. Turns out, according to my sources, that SCC is one of the more common, less-aggressive and best understood forms of the Monster. And, now that they are absolutely sure that HPV positive SCC responds so much better to treatments, I would say you should thank your lucky stars that this is the one you have. My Docs all said the same thing......If you have to have cancer, this is the one to have because they know more about it, it is less-aggresive, and it has a much higher 5 year survival rate.

JK

PS: no such thing as freaking out over nothing. That's the human part of us. But, the way to control your "freaking" and to minimize it is to ask questions until you get the answers you seek.......whether of your healthcare pros or here at the CSN with all of the wonderful, compassionate, experienced folks.

Sides and Saliva
Alex,

Good to see you back on the board. I understand totally what you are going through. Just remember, it's your journey....and everyone is different. Take what advice you can from those close to you, your docs, and others (like this message board). Looks to me like you are getting some great advise from the 'road warriors' who have been through it.

I was diagnosed in 2004 with SCC with 'unknown primary' (YIKES!!). Because of this I got the full treatment....radiation on both sides and front. I took the amifostene M-W-F (learned to love Tuesdays & Thursdays!), but not sure if it helped. I have 50% of my saliva and can eat whatever I want (as long as I have a glass of water). Taste is back, and I don't need to carry a bottle of water with me. I am lucky...not sure if the amifostene helped, but you may want to try it out. If it doesn't fit you, then you can stop.

I am also OK with my teeth. No cavities since the treatments. Brush a lot, and use Biotene toothpaste & mouthwash. See dentist every 4 months.

My radiation doc say that they are much better today with 'focused' practices that can spare salivary glands. Amazing changes in 5 years. I'm sure your docs will give you the best advice.

Remember, you'll get through this. It's a roller coaster, so get ready for the ups and downs. Don't get tied up to time......it moves at a different pace. You will beat this. My dad said that 'the strongest steel goes through the hottest fire'.

George

victor53

BeenThereDoneThat said:

Sides and Saliva
Alex,

Good to see you back on the board. I understand totally what you are going through. Just remember, it's your journey....and everyone is different. Take what advice you can from those close to you, your docs, and others (like this message board). Looks to me like you are getting some great advise from the 'road warriors' who have been through it.

I was diagnosed in 2004 with SCC with 'unknown primary' (YIKES!!). Because of this I got the full treatment....radiation on both sides and front. I took the amifostene M-W-F (learned to love Tuesdays & Thursdays!), but not sure if it helped. I have 50% of my saliva and can eat whatever I want (as long as I have a glass of water). Taste is back, and I don't need to carry a bottle of water with me. I am lucky...not sure if the amifostene helped, but you may want to try it out. If it doesn't fit you, then you can stop.

I am also OK with my teeth. No cavities since the treatments. Brush a lot, and use Biotene toothpaste & mouthwash. See dentist every 4 months.

My radiation doc say that they are much better today with 'focused' practices that can spare salivary glands. Amazing changes in 5 years. I'm sure your docs will give you the best advice.

Remember, you'll get through this. It's a roller coaster, so get ready for the ups and downs. Don't get tied up to time......it moves at a different pace. You will beat this. My dad said that 'the strongest steel goes through the hottest fire'.

George

Jkinobay is exactly right
Jkinobay is exactly right i would just retype what he wrote.
I got both sides done and i wanted it. I wanted the most chemo and the most radiation and then the best operation i could get.
It sucked week 3 thru 7 of radiation and the 2 months after radiation.
But i feel great now my taste buds are still not that great. But my saliva aint too bad id say 85% of normal. I had rads both sides 7 weeks with doubles on fridays. Have to have imrt . Get a port and a peg tube and a feeding pump and get as much nutrition and fluid into you.
The more nutrition and fluid you get in you the better you feel.

lyolan1

jkinobay said:

On the contrary.....HPV16 Positive HNC's
They are very common and are being understood better all the time. Turns out, according to my sources, that SCC is one of the more common, less-aggressive and best understood forms of the Monster. And, now that they are absolutely sure that HPV positive SCC responds so much better to treatments, I would say you should thank your lucky stars that this is the one you have. My Docs all said the same thing......If you have to have cancer, this is the one to have because they know more about it, it is less-aggresive, and it has a much higher 5 year survival rate.

JK

PS: no such thing as freaking out over nothing. That's the human part of us. But, the way to control your "freaking" and to minimize it is to ask questions until you get the answers you seek.......whether of your healthcare pros or here at the CSN with all of the wonderful, compassionate, experienced folks.

radiation options
JK, Thanks again for everything. I really appreciate it. When I am finished I hope that I can help someone though this. I am getting the peg tube for sure and the IMRT. Maybe the Oncologist wanted to lay it out in the worst case scenario, and if I did better, then good all the way around. I'm still trying to figure out why she said that I would lose both glands and have no saliva. She said that they do not regenerate. Also, because everything is so close, it is unavoidable to not hit the salivary glands. Again, since HPV-16 is so treatable, responds so well to radiation/chemo, my cancer was "encapsulated" in the tonsil and contained within my lymph nodes, was not in the surrounding tissue or blood vessels, why the severe treatment on my right side. Until I hear back from the Boston team, I am leaning toward a minimal dose of rads on my right side. Alex.

lyolan1

victor53 said:

Jkinobay is exactly right
Jkinobay is exactly right i would just retype what he wrote.
I got both sides done and i wanted it. I wanted the most chemo and the most radiation and then the best operation i could get.
It sucked week 3 thru 7 of radiation and the 2 months after radiation.
But i feel great now my taste buds are still not that great. But my saliva aint too bad id say 85% of normal. I had rads both sides 7 weeks with doubles on fridays. Have to have imrt . Get a port and a peg tube and a feeding pump and get as much nutrition and fluid into you.
The more nutrition and fluid you get in you the better you feel.

radiation/ options
Hi Victor, thanks for your time and support. It seems like I may be obsessing over the rad/salivary gland. I can handle 80% saliva. I just do not want 0%. The teeth, should be okay because they are in good shape. The radiation is what it is going to be on my neck, can't be helped. I am seeking more opinions and numbers regarding the right side rads. Keep in touch. Alex.

lyolan1

BeenThereDoneThat said:

Sides and Saliva
Alex,

Good to see you back on the board. I understand totally what you are going through. Just remember, it's your journey....and everyone is different. Take what advice you can from those close to you, your docs, and others (like this message board). Looks to me like you are getting some great advise from the 'road warriors' who have been through it.

I was diagnosed in 2004 with SCC with 'unknown primary' (YIKES!!). Because of this I got the full treatment....radiation on both sides and front. I took the amifostene M-W-F (learned to love Tuesdays & Thursdays!), but not sure if it helped. I have 50% of my saliva and can eat whatever I want (as long as I have a glass of water). Taste is back, and I don't need to carry a bottle of water with me. I am lucky...not sure if the amifostene helped, but you may want to try it out. If it doesn't fit you, then you can stop.

I am also OK with my teeth. No cavities since the treatments. Brush a lot, and use Biotene toothpaste & mouthwash. See dentist every 4 months.

My radiation doc say that they are much better today with 'focused' practices that can spare salivary glands. Amazing changes in 5 years. I'm sure your docs will give you the best advice.

Remember, you'll get through this. It's a roller coaster, so get ready for the ups and downs. Don't get tied up to time......it moves at a different pace. You will beat this. My dad said that 'the strongest steel goes through the hottest fire'.

George

radiation/options
Hi George, Thanks so much for the words of encouragement. I thought I was good with the whole treatment process and then the oncologist said some things that alerted my little intuition voice in me. I am going to go back to my original team in Boston for some opinions on treatment process and choices. I will be in touch soon. Still working and preparing for my upcomming rad/chemo. Alex.

lyolan1

lolojldunn said:

Radiation/options
Good morning Alex,

Ljoy offers up sound information that I overlooked. When you are going through the radiation treatments the machine does rotate to radiate the targeted area from different angles. In my case, I think that the majority of my exposure was on the right side of my neck as that is where I experienced the burning. The radiation dept.staff that I worked with were absolutely awesome. They provided great advise regarding "burn" treatment and did a wonderful job of trying to alleviate my fears.

You're right. In my case, I thought that the treatment was indeed brutal. Matter of fact, my radiation Doc who I have had the good fortune to know on a personal level, was brutally honest with me. She stated that she was going to "kick my butt". She lived up to that statement...About half way through my "two a day" and weekly Cisplatin, I got sicker than a dog. She give me a week off to "heal up".

I had the PEG tube and port installed before the marathon begin. I used the tube for a couple of months after my treatments ended. Your throat is going to be sore. Keep trying to shallow. You don't want those muscles to atrophy.

My teeth were in great shape prior to starting treatment. My dentist made me two set of tray's. One was thicker that I used during my radiation treatments and the other was used for floride treatments in the evenings. My last check-up showed my teeth to still be in great shape.

I didn't experience any jaw problems to speak of. I have TMJ that's been a problem for many years prior to cancer. I've learned to live with it.

Take care Alex,

Jim

radiation/options
Hi Jim, thanks again for your help and words of wisdom. I felt I was ready for the 2nd stage of the big battle, thought my mind was right, I guess I was not as prepared as I thought, words and information were delivered in a way that scarred the hell out of me. I want a normal standard of living when I am done. Everyone that responded has been very positive and upbeat. I will keep you posted on my progress. Alex.

lyolan1

lolojldunn said:

Radiation/options
Good morning Alex,

Ljoy offers up sound information that I overlooked. When you are going through the radiation treatments the machine does rotate to radiate the targeted area from different angles. In my case, I think that the majority of my exposure was on the right side of my neck as that is where I experienced the burning. The radiation dept.staff that I worked with were absolutely awesome. They provided great advise regarding "burn" treatment and did a wonderful job of trying to alleviate my fears.

You're right. In my case, I thought that the treatment was indeed brutal. Matter of fact, my radiation Doc who I have had the good fortune to know on a personal level, was brutally honest with me. She stated that she was going to "kick my butt". She lived up to that statement...About half way through my "two a day" and weekly Cisplatin, I got sicker than a dog. She give me a week off to "heal up".

I had the PEG tube and port installed before the marathon begin. I used the tube for a couple of months after my treatments ended. Your throat is going to be sore. Keep trying to shallow. You don't want those muscles to atrophy.

My teeth were in great shape prior to starting treatment. My dentist made me two set of tray's. One was thicker that I used during my radiation treatments and the other was used for floride treatments in the evenings. My last check-up showed my teeth to still be in great shape.

I didn't experience any jaw problems to speak of. I have TMJ that's been a problem for many years prior to cancer. I've learned to live with it.

Take care Alex,

Jim

radiation/options
Hi Jim, thanks again for your help and words of wisdom. I felt I was ready for the 2nd stage of the big battle, thought my mind was right, I guess I was not as prepared as I thought, words and information were delivered in a way that scarred the hell out of me. I want a normal standard of living when I am done. Everyone that responded has been very positive and upbeat. I will keep you posted on my progress. Alex.