Mucoepidermoid Carcinoma

ekdennie

Jimbo55 said:

Exercise
Nicole, Chris & Elizabeth, I had BOT cancer and endured 35 rads and 3 cistplatin injections. I tried to walk everyday throughout treatment. I started out with an easy 35-45 minute stroll & when I was finally finished with the TX, I could barely walk 20-25 minutes. But I really believe it helps with the fatigue, helps combat the side effects and also helps improve the mental side of things. It gave me a sense of accomplishment after each walk, especially toward the end of treatment when it was more of a struggle. I always felt better at the end of the walk than at the beginning. Stay strong. Cheers

Jimbo

thanks!
thanks jimbo! I have been trying to keep up my exercise levels...I will just have to try harder! I am nearing the end and fatigue has become my constant companion, so I will try walking more...it will give me something easy I can do with my kids!
-elizabeth

ekdennie

luv4lacrosse said:

POSITIVE ATTITUDES
Nicole, Elixabeth & Chris, I really enjoied reading the entire thread on this post. It was a good source of total positive energy for me. I have Tonsil Ca. with Mets to the neck. I am almost 2 weeks post treatment. I had 2 big surgeries, 30 Rads and 3 Cisplatin Treatments which are licking my butt right now.

Reading all or your conversations was a great way to start a Monday.

Best of luck to all of you.

Mike

thanks mike!
Thanks mike...reading that our positive attitude has helped someone just gives me the energy to stay positive when radiation is trying to kick my butt! Best of luck to you as well! I hope you can find a way to smile through the butt licking! (I just imagined how hard my son would laugh at a phrase like that! hehehe) Wishing you much strength to stay strong!

elizabeth

adventurebob

ekdennie said:

thanks!
thanks jimbo! I have been trying to keep up my exercise levels...I will just have to try harder! I am nearing the end and fatigue has become my constant companion, so I will try walking more...it will give me something easy I can do with my kids!
-elizabeth

Exercise
Hi Elizabeth,
I've been reading your posts. Sorry for all that you've been through and are going through. You're tough.
I wanted to let you know about rebounding for exercise. It's really just bouncing on one of those mini trampolines but the value is huge and comes in alot less time than most other forms of exercise. The reason is the g-forces that are put on every cell of your body. At one point they are negative and the next they are positive. Your cells get tremendous stimulation through this process and your entire body benefits. NASA has been using rebounding for years to train the astronauts. It is simply not possible to get a better workout in a shorter amount of time than through rebounding. There are a lot of good references on the web that go over the basics. Really, 10 minutes daily could make a huge difference and is much gentler on the body than most other forms.
Stay strong. You and your family are in my thoughts and prayers.

Bob

kingcole42005

ekdennie said:

speed bumps
It sounds like you are dong a good job of being positive too! I really feel that it will help make this time go a little faster. the days I am happy go by so much faster than my bad days. I have been told by my radiation oncologist that I might lose my hair too...it hasn't happened yet, but I think it will start soon. I don't think having issues with losing your hair is stupid at all. as women we are praised for our hair, we spend a ton of time getting it done, colored, highlighted, cut, and then styled. it is a physical sign that you have cancer and brings so many "sad eyes" your way unless you wear a good wig. I think that speed bump will affect me the most...and my kids. right now my face is slowly turning a mix of red and tan. I have developed sores from the radiation so I sound funny when I talk. I have some great meds to treat it, so hopefully it doesn't get too much worse! no one notices anything until i start to talk...I sound very funny, but not as bad as I did post-surgery (very hypernasal). I have a hole in my hard palate now that will be permanent, but I will get a permanent prosthetic several months post radiation. I have an interim one now and I sound more like myself!
I completely understand about not wanting people to feel sorry for you. I hate when I tell someone that I am battling cancer that I get these poor you looks. or when they can no longer look me in the eyes. I know it isn't anything personal...they just don't know what to say.
I have a strong support system here as well. it helps, but being able to tell someone how I feel who isn't family has helped the most. it is so hard for my family to see me in pain or to hear about it. I have pain...but it isn't unmanageable...just frustrating! everyone keeps asking what they can do to help me, but none of them seem to understand that what I need the most are people who will spend quality time with my kids while I sleep. that is what they miss the most. I have been trying to make one day a week a mommy and kid day (with a lot of naps for me!)
The radiation procedure itself is not bad, no pain, I just close my eyes and pretend that I am at a spa with a facial...I am placed in a tight mask...it helps me not feel confined to think of it as a very expensive spa treatment! my husband saw the machine for the first time wednesday...he says I have big brass balls after he saw it! that just makes me laugh. I can look at it as being something scary and get upset or as a means to an end...to be cancer free in 5, 10, 15, 20 years. I keep being told I have a great attitude about this, but it only does me harm to not be positive and to try to smile every day. the days I don't try to smile I get so tired and worn out and feel so depressed...and I hate being depressed!
oh, I almost forgot...I have heard that women who go get a portrait taken with their wig on (or even without it) feel so empowered by the experience. I am planning to have my picture taken after I finish my treatments for the same reason. If I lose my hair I will be getting a portrait, just a little sooner...just for me!
I am getting sleepy from my pain meds!
good luck with chemo...I hope you stay positive too! huge hugs to you! wishing you have more good days than bad!
elizabeth

Hi Elizabeth
I was diagnosed with MEC in August. I have/had intermediate to high grade in the floor of my mouth. I had surgery to remove it on 10/13, they removed the whole floor of my mouth on the left side with a skin graft from my leg and a neck disection. I have my first appointment for radiation consult this friday. Frankly I'm terrified at times. I'm trying my best to remain positive, I really am. But I have those moments where I just lose it. The intermediate to high grade is what gets me the most. They didn't find any spread of it to my lymph nodes which is great. Also it looks as if they got it all from the floor of my mouth also great! But why don't I feel great. I feel lost. I'm glad I found this website, it does help to hear others going thru the same treatment. Your so positive, and I love reading your posts. I talk funny too, one side of my tongue is paralyzed so I'm a cross between Elmer Fudd and Daffy Duck! I've had people mimic me trying to be funny, but you know what, it isn't funny right now. It will be, but it's too fresh. I am going to counseling and will start exercising and of course my diet will have to change. I guess I just needed to vent a little as I feel a little better just writing this. It's hard putting myself out there to complete strangers, but what other options do I have? Thanks for taking the time to read this. Shelly

nkimber

adventurebob said:

Exercise
Hi Elizabeth,
I've been reading your posts. Sorry for all that you've been through and are going through. You're tough.
I wanted to let you know about rebounding for exercise. It's really just bouncing on one of those mini trampolines but the value is huge and comes in alot less time than most other forms of exercise. The reason is the g-forces that are put on every cell of your body. At one point they are negative and the next they are positive. Your cells get tremendous stimulation through this process and your entire body benefits. NASA has been using rebounding for years to train the astronauts. It is simply not possible to get a better workout in a shorter amount of time than through rebounding. There are a lot of good references on the web that go over the basics. Really, 10 minutes daily could make a huge difference and is much gentler on the body than most other forms.
Stay strong. You and your family are in my thoughts and prayers.

Bob

I have heard a ton about the rebounder and was planning to get a mini trampouline this week... supposedly great for lymphatic drainage too (which we all need), plus I think it sounds fun! I went for a fairly long walk today (5 days post chemo treatment) and it was a little rough... it's kind of daunting to get winded quickly when that never used to happen before! But I just have to keep knowing that it is my body's way of healing.

Keep up all of the positive attitudes out there... I know it's hard for me sometimes too but that's what is going to beat this thing!

Lots of hugs to everybody... stay strong and don't give up!

Nicole

cdtoledo

nkimber said:

I have heard a ton about the rebounder and was planning to get a mini trampouline this week... supposedly great for lymphatic drainage too (which we all need), plus I think it sounds fun! I went for a fairly long walk today (5 days post chemo treatment) and it was a little rough... it's kind of daunting to get winded quickly when that never used to happen before! But I just have to keep knowing that it is my body's way of healing.

Keep up all of the positive attitudes out there... I know it's hard for me sometimes too but that's what is going to beat this thing!

Lots of hugs to everybody... stay strong and don't give up!

Nicole

Shelly
Getting the path results back after my surgery was tough. There was so much positivity from the surgery itself - everyone around me was happy and excited even that it had went well - but then when I found out that it had spread to my lymph nodes - and was being being called "high grade" and stage 4 - it was a blow that took some private time to process. I got a copy of my path report and tried to research every little thing I found on there. Lot of scary terms on there like "perineural space invasion present", "blood vessel invasion noted", "resection margins positive" - and I'm thinking 'Holy crap - can this path report be any worse' (I'm sure it can be - I don't want to short sell what anyone else is dealing with). I guess what many of us probably fear more than surgeries and treatments - are those long term probability and outcome charts. We all want to be in that 90% range, and when you find out you might not be - that the odds aren't as much in your favor as you were hoping - you've got every right to have some tough moments while you process it.

My surgeon has been really good at keeping me focused on one step at a time. First we knocked out the surgery. Now - we're getting ready to knock out the treatment. Then - there's the recovery from the treatment. I think one really good piece of advice he's given me is to not short sell the 6-8 weeks of recovery needed after radiation. He's says everybody tries to get over it in less than that - and everybody ends up disappointed - so prepare to give yourself a full 6-8 weeks to recover he says. As the days go by - I find myself a lot less concerned with that path report - and I'm getting focused on the next step coming - the radiation. So - I'm trying to live in the present and tackle one thing at a time. It's OK to have some weak moments - I'm sure we all have them - but the future in front of you doesn't have anything to do with a probability outcome chart - it's treatment, recovery, and then hopefully a return to semblence of normal life. A little bit of normal life sounds pretty good to me. One day at a time - and we'll get there.

Take care and stay strong all,

Chris

ekdennie

kingcole42005 said:

Hi Elizabeth
I was diagnosed with MEC in August. I have/had intermediate to high grade in the floor of my mouth. I had surgery to remove it on 10/13, they removed the whole floor of my mouth on the left side with a skin graft from my leg and a neck disection. I have my first appointment for radiation consult this friday. Frankly I'm terrified at times. I'm trying my best to remain positive, I really am. But I have those moments where I just lose it. The intermediate to high grade is what gets me the most. They didn't find any spread of it to my lymph nodes which is great. Also it looks as if they got it all from the floor of my mouth also great! But why don't I feel great. I feel lost. I'm glad I found this website, it does help to hear others going thru the same treatment. Your so positive, and I love reading your posts. I talk funny too, one side of my tongue is paralyzed so I'm a cross between Elmer Fudd and Daffy Duck! I've had people mimic me trying to be funny, but you know what, it isn't funny right now. It will be, but it's too fresh. I am going to counseling and will start exercising and of course my diet will have to change. I guess I just needed to vent a little as I feel a little better just writing this. It's hard putting myself out there to complete strangers, but what other options do I have? Thanks for taking the time to read this. Shelly

Welcome Shelly
I completely understand about having those moments when you feel you will lose it. I cried the hardest when the doctor told me it was no longer low grade, but intermediate. I had done too much research before hand to feel very upbeat when I heard those words. Intermediate grade is still too new for me to feel comfortable with it. just a few years ago our cancer was only low grade or high grade. My doctor (ENT) told me that they had great margins, but once he said the words intermediate, my first response was when do we start radiation. The numbers and facts and percentages can be so scary when you look at them, so I chose to stop looking at them. I decided that I had to be in the long term survivor list regardless what the chances were. I am going to do whatever I have to, whatever I can to make sure I am in that list. once I came to that realization then I felt I had no choice but to be positive about this.
I was also so pissed off when I couldn't speak well, and now that my tongue is getting some of the radiation, I hate that it is numb and that I can't feel food when I try to swallow it. without my mouth piece I sound funny and no one can understand me. with this one I sound so much better, but right now it hurts to have in, so it is a toss-up...I'm keeping it in so I sound somewhat like myself.
I also understand about things being too fresh, too new. my family likes to joke that I could eat a piece of spaghetti though my nose and then pull it out my mouth...which is true, but it is not something I intend to try...or at least not on purpose, and not right now when everything is painful to eat. I eat anyway...I love, just love food too much!
who else but complete strangers can you just tell it like it is...family and friends try hard and they often mean well, but they can't really understand. you can vent any time you need to...sometimes it is all that helps. tell us your ups and downs...we may not have gone through exactly what you are, but we can sure relate!
I am sending you a giant hug through this note! Smile through the pain, smile through the frustration, and when you are ready smile when making fun of your own new voice. grieve for what is no more, but embrace what is...you. you are here. you will survive this.
HUGS and lots of prayers!
elizabeth

ekdennie

adventurebob said:

Exercise
Hi Elizabeth,
I've been reading your posts. Sorry for all that you've been through and are going through. You're tough.
I wanted to let you know about rebounding for exercise. It's really just bouncing on one of those mini trampolines but the value is huge and comes in alot less time than most other forms of exercise. The reason is the g-forces that are put on every cell of your body. At one point they are negative and the next they are positive. Your cells get tremendous stimulation through this process and your entire body benefits. NASA has been using rebounding for years to train the astronauts. It is simply not possible to get a better workout in a shorter amount of time than through rebounding. There are a lot of good references on the web that go over the basics. Really, 10 minutes daily could make a huge difference and is much gentler on the body than most other forms.
Stay strong. You and your family are in my thoughts and prayers.

Bob

Bob,
That sounds just perfect...I can also use it to exercise my kids during the winter when they want to go outside and I need them to be inside! I will getting one very soon! I love using my mom's small trampoline when I was younger...I just might have to make sure my husband and oldest son doesn't see for the first little while...loose belly skin from the baby and from so much weight loss! I can imagine my son asking why my belly moves like jelly! hehehehe
elizabeth

ekdennie

cdtoledo said:

Shelly
Getting the path results back after my surgery was tough. There was so much positivity from the surgery itself - everyone around me was happy and excited even that it had went well - but then when I found out that it had spread to my lymph nodes - and was being being called "high grade" and stage 4 - it was a blow that took some private time to process. I got a copy of my path report and tried to research every little thing I found on there. Lot of scary terms on there like "perineural space invasion present", "blood vessel invasion noted", "resection margins positive" - and I'm thinking 'Holy crap - can this path report be any worse' (I'm sure it can be - I don't want to short sell what anyone else is dealing with). I guess what many of us probably fear more than surgeries and treatments - are those long term probability and outcome charts. We all want to be in that 90% range, and when you find out you might not be - that the odds aren't as much in your favor as you were hoping - you've got every right to have some tough moments while you process it.

My surgeon has been really good at keeping me focused on one step at a time. First we knocked out the surgery. Now - we're getting ready to knock out the treatment. Then - there's the recovery from the treatment. I think one really good piece of advice he's given me is to not short sell the 6-8 weeks of recovery needed after radiation. He's says everybody tries to get over it in less than that - and everybody ends up disappointed - so prepare to give yourself a full 6-8 weeks to recover he says. As the days go by - I find myself a lot less concerned with that path report - and I'm getting focused on the next step coming - the radiation. So - I'm trying to live in the present and tackle one thing at a time. It's OK to have some weak moments - I'm sure we all have them - but the future in front of you doesn't have anything to do with a probability outcome chart - it's treatment, recovery, and then hopefully a return to semblence of normal life. A little bit of normal life sounds pretty good to me. One day at a time - and we'll get there.

Take care and stay strong all,

Chris

outcome chart and reality
chris-
Plus you have to remember that those charts include people who were much older when they were diagnosed. they don't indicate the root cause of why they are not here so many years later. I read one report that made me smile because they put a HUGE disclaimer on it. they wrote that the facts and figures contained inside the graph needed to be interpreted with care, as the numbers didn't indicate if they had clear margins, had any spread, what types of treatments they had, how old they were, if there were other health concerns present, nor did they indicate age at time of treatment! so pretty much they have numbers, how many had it and how many of them made it five years, but the study was based on treatments in the early 1980's -1990's. medical advances have gotten so much better since then!

our cancer (MEC) can hit anyone, regardless of age. there is no rhyme or reason for it. young children get it, the elderly get it, and those in between. there is nothing any of us could have done to prevent it. but we are lucky...we found out we have it, and we are able to get treatment for it. we have doctors who know how to treat it and they do not do things carefully...if it isn't low grade...get radiation. if you don't have clean margins, get radiation. radiation causes its own issues, but we are here to feel it. each day I have pain I just remind myself, it is one less day of treatment...I am one more day closer to being done. one more day closer to having to wait for my next appointment. one day closer to being able to say I am cancer free. what wonderful thoughts!

One step at a time is all we really can do. I think sometimes it is harder to say, I have cancer. you know, to admit it to yourself. but once you do and once you are able to freely talk about it...wow! it has helped me so much to know I am not the only one with it. that I am not alone. when I am feeling down I just read what everyone else has written and what I have written. then I give myself a kick in the rear and say stop moping...it doesn't make the time go any faster! stay strong. this too will pass!
Huge Hugs and Prayers!
elizabeth

ekdennie

cdtoledo said:

Shelly
Getting the path results back after my surgery was tough. There was so much positivity from the surgery itself - everyone around me was happy and excited even that it had went well - but then when I found out that it had spread to my lymph nodes - and was being being called "high grade" and stage 4 - it was a blow that took some private time to process. I got a copy of my path report and tried to research every little thing I found on there. Lot of scary terms on there like "perineural space invasion present", "blood vessel invasion noted", "resection margins positive" - and I'm thinking 'Holy crap - can this path report be any worse' (I'm sure it can be - I don't want to short sell what anyone else is dealing with). I guess what many of us probably fear more than surgeries and treatments - are those long term probability and outcome charts. We all want to be in that 90% range, and when you find out you might not be - that the odds aren't as much in your favor as you were hoping - you've got every right to have some tough moments while you process it.

My surgeon has been really good at keeping me focused on one step at a time. First we knocked out the surgery. Now - we're getting ready to knock out the treatment. Then - there's the recovery from the treatment. I think one really good piece of advice he's given me is to not short sell the 6-8 weeks of recovery needed after radiation. He's says everybody tries to get over it in less than that - and everybody ends up disappointed - so prepare to give yourself a full 6-8 weeks to recover he says. As the days go by - I find myself a lot less concerned with that path report - and I'm getting focused on the next step coming - the radiation. So - I'm trying to live in the present and tackle one thing at a time. It's OK to have some weak moments - I'm sure we all have them - but the future in front of you doesn't have anything to do with a probability outcome chart - it's treatment, recovery, and then hopefully a return to semblence of normal life. A little bit of normal life sounds pretty good to me. One day at a time - and we'll get there.

Take care and stay strong all,

Chris

radiation day 23
I am on radiation day 23 today. I have about 7 more treatments left, unless they add a couple to the end. I love sundays and mondays, but by wednesday the radiation starts to make me more and more tired. I am able to eat again though...which makes me do a little happy dance each time I am able to eat anything. very very small meals, but it is working my jaw muscles! I can't wait until treatment is over and my sores are healed up...people better watch out...I will be plowing my way through some good food. I won't eat any so so food...If I am going to take the time to eat...it is gonna be good. I hope my husband is putting money aside! if you have radiation...do your jaw exercises...if you are not given any...open and close your jaw twenty times three times a day. my jaw has gotten so stiff, but the exercises are helping so much! I am now doing mine every time I take my pain meds!
my 4 year old son told me he doesn't think he likes the machine anymore...it is making mommy's face too red and mommy sleeps too much. I sat him down and told him that mommy sleeps to get better. would he rather have mommy be awake and be cranky mommy and not get well or would he rather mommy get her sleep so that when she is awake she is happy mommy. he looked at me like I was crazy and said, "I don't like cranky mommy...you better go back to bed!" hehehe what a sweetheart! my daughter keeps coming in and giving my arm kisses and then saying...love momma, get better. warm fuzzies!
Smiles, hugs, and prayers for you all!
elizabeth

kingcole42005

ekdennie said:

Welcome Shelly
I completely understand about having those moments when you feel you will lose it. I cried the hardest when the doctor told me it was no longer low grade, but intermediate. I had done too much research before hand to feel very upbeat when I heard those words. Intermediate grade is still too new for me to feel comfortable with it. just a few years ago our cancer was only low grade or high grade. My doctor (ENT) told me that they had great margins, but once he said the words intermediate, my first response was when do we start radiation. The numbers and facts and percentages can be so scary when you look at them, so I chose to stop looking at them. I decided that I had to be in the long term survivor list regardless what the chances were. I am going to do whatever I have to, whatever I can to make sure I am in that list. once I came to that realization then I felt I had no choice but to be positive about this.
I was also so pissed off when I couldn't speak well, and now that my tongue is getting some of the radiation, I hate that it is numb and that I can't feel food when I try to swallow it. without my mouth piece I sound funny and no one can understand me. with this one I sound so much better, but right now it hurts to have in, so it is a toss-up...I'm keeping it in so I sound somewhat like myself.
I also understand about things being too fresh, too new. my family likes to joke that I could eat a piece of spaghetti though my nose and then pull it out my mouth...which is true, but it is not something I intend to try...or at least not on purpose, and not right now when everything is painful to eat. I eat anyway...I love, just love food too much!
who else but complete strangers can you just tell it like it is...family and friends try hard and they often mean well, but they can't really understand. you can vent any time you need to...sometimes it is all that helps. tell us your ups and downs...we may not have gone through exactly what you are, but we can sure relate!
I am sending you a giant hug through this note! Smile through the pain, smile through the frustration, and when you are ready smile when making fun of your own new voice. grieve for what is no more, but embrace what is...you. you are here. you will survive this.
HUGS and lots of prayers!
elizabeth

Thank you Elizabeth
Thank you Elizabeth. I have read many of your posts and they are an inspiration. I start radiation on 11/29 and really I don't want to at all!! I know I have to, it brings my odds up tremendously but I feel like a petulant child stamping her foot. Damnit I don't want to! I read about your mask advice and you know what I just found out is I'm clausterphobic and don't like being pinned down. What a time to figure that one out. So I guess I'll have to be med'ed out for the first few times I get it done until my brain figures out it's not going to kill me. One of the problems is they put a mouth piece in to hold my tongue up and out of the way. So I feel so helpless and I can only breath through my nose. I hope it's fast, do you have any idea how long you have to wear the mask for? They told me the first time like 15 to 20 minutes. I have to do 33 treatments but luckily don't have to do chemo. Yeah, I need to smile and I do but I want this to all be over and done with and get on with my life and the "new" normal!

ekdennie

kingcole42005 said:

Thank you Elizabeth
Thank you Elizabeth. I have read many of your posts and they are an inspiration. I start radiation on 11/29 and really I don't want to at all!! I know I have to, it brings my odds up tremendously but I feel like a petulant child stamping her foot. Damnit I don't want to! I read about your mask advice and you know what I just found out is I'm clausterphobic and don't like being pinned down. What a time to figure that one out. So I guess I'll have to be med'ed out for the first few times I get it done until my brain figures out it's not going to kill me. One of the problems is they put a mouth piece in to hold my tongue up and out of the way. So I feel so helpless and I can only breath through my nose. I hope it's fast, do you have any idea how long you have to wear the mask for? They told me the first time like 15 to 20 minutes. I have to do 33 treatments but luckily don't have to do chemo. Yeah, I need to smile and I do but I want this to all be over and done with and get on with my life and the "new" normal!

appointments are short!
My doctor fitted me with one mask with the tongue piece, but decided not to use it, but I fully understand how uncomfortable it can be. I recommend using a neil med sinus rinse before each treatment, that way you know your nose is clear. I used them every day...it helped me stay calm. the mask with the mouthpiece didn't block out enough of my tongue, so my doctor used a regular mask, but I had to wear a special mouthpiece when I was in radiation...my regular one has metal hooks on the end. my treatments were very fast. it took about 5 minutes for a scan to make sure I am lined up correctly, then you come out of the unit, they adjusted my settings and then I went back in for between 5 and 10 minutes. I don't know if you are having IMRT, but if you are...it was very quick!
I just finished my 30 treatments on friday. I broke down and cried that night, I am still not sure if it was because it was all over or because I am so thankful that I have a chance at watching my kids grow old, or if I was just so tired from a long day. I think it helps that when your treatments are over that you think like you would after a surgery...plan that once the procedure is over you need time to heal. don't expect too much, but push yourself. I won't try to pull any punches...it is going to hurt, not the procedure itself, but after a week or two of treatments, you will hurt where the radiation is hitting. let your doctor know. mine has put me on some very strong pain meds, but they work...expect when I want to eat...but i use a mouthwash to help with that. I keep forcing myself to eat even when I am tired, when I am in pain, or when I just don't want to eat. I have lost some weight...it is important to try to not lose too much...it can delay your treatment.

you will do great. 33 treatments will be over before you know it. you will be tired after the treatments...get as much sleep as you can. just let your doctors know that you feel nervous about it, they will get you meds. try to avoid people who are sick...getting too sick can also delay your treatments. I wasn't clausterphobic before...I am now. i don't like anything going near my face unless I am putting it there. I will overcome it...it will just take time.
I will say a prayer for you that you breeze through this. that you find a way to get your mind off the mask...I chose to view it as a facial at a fancy spa (it made it seem like less of a big deal that way)...and that you can get on with your life and your new normal, very soon.
best of luck to you!
hugs and smiles!
elizabeth

Scambuster

cdtoledo said:

Shelly
Getting the path results back after my surgery was tough. There was so much positivity from the surgery itself - everyone around me was happy and excited even that it had went well - but then when I found out that it had spread to my lymph nodes - and was being being called "high grade" and stage 4 - it was a blow that took some private time to process. I got a copy of my path report and tried to research every little thing I found on there. Lot of scary terms on there like "perineural space invasion present", "blood vessel invasion noted", "resection margins positive" - and I'm thinking 'Holy crap - can this path report be any worse' (I'm sure it can be - I don't want to short sell what anyone else is dealing with). I guess what many of us probably fear more than surgeries and treatments - are those long term probability and outcome charts. We all want to be in that 90% range, and when you find out you might not be - that the odds aren't as much in your favor as you were hoping - you've got every right to have some tough moments while you process it.

My surgeon has been really good at keeping me focused on one step at a time. First we knocked out the surgery. Now - we're getting ready to knock out the treatment. Then - there's the recovery from the treatment. I think one really good piece of advice he's given me is to not short sell the 6-8 weeks of recovery needed after radiation. He's says everybody tries to get over it in less than that - and everybody ends up disappointed - so prepare to give yourself a full 6-8 weeks to recover he says. As the days go by - I find myself a lot less concerned with that path report - and I'm getting focused on the next step coming - the radiation. So - I'm trying to live in the present and tackle one thing at a time. It's OK to have some weak moments - I'm sure we all have them - but the future in front of you doesn't have anything to do with a probability outcome chart - it's treatment, recovery, and then hopefully a return to semblence of normal life. A little bit of normal life sounds pretty good to me. One day at a time - and we'll get there.

Take care and stay strong all,

Chris

To everyone going through or about to start treatment
Just a note to those about to start or recently started the journey through treatment, I usually chime in somewhere about here to throw some ideas out which may lead to better outcomes for all. This is basically about nutrition and diet and the effect on your general health and ability to beat this disease and also reduce incidence of recurrence. While most of your Doctors still do not believe nutrition plays a significant part in this fight, I do believe it plays an important role. I figure that something wasn't quite working right for us to be affected by cancer, then our bodies are subjected to very heavy and distressing treatments which weaken our immunity and general condition, then we are expected to continue as we were, in a new weakened state. My view is we need to rebuild the body so that it is actually stronger and more able to resist and fight disease, than when we were first invaded by cancer. I am generalizing of course as there are many known and unknown reasons for why we have been affected by cancer. Many of us were very fit and healthy, others no so fit. My aim here is not to answer those questions, simply to use common sense and look at some simple behavior and lifestyle changes that may improve our chances of a long and healthy life after cancer.

Nearly all the complimentary and alternative studies and literature pretty much agree that diet and nutrition are important.

The simple rules being that we should eliminate all animal proteins (meat, fish & dairy), unnatural sugars, processed foods, fried foods and basically consume fresh fruits, vegetables, nuts and pulses. This also means consuming as much food in the raw state (i.e. salads and fruits) as possible. I also believe we may need additional support in the form of supplements to boost the bodies vital organ functions and restore and rebuild our all so critical immune systems. Basically give the body everything it needs and nothing it doesn't need. 'Moderation' is not a valid argument, just an excuse. Moderation is like putting smaller bullets in the pistol when playing Russian Roulette, they are still bullets.

There are many books quoted on these pages. i personally found 'The China Study' to have helped guide the way to going Vegetarian. There are many other good reads but the point is that once all the dots start to join up, then it is just good sense to look seriously at this path. The good thing is there no real downside and if you do go down this path, then re-evaluate after say 12 months and at least you have given it a go and you will see the difference the change in diet has made.

The change in eating is a bit of a challenge at times but it is often a a case of mind over matter, but I figure my wife and 2 little kids deserve my very best attention to making sure I stay around so the choice at meal times becomes very simple.

For the next period, some of you will need to focus on just getting in enough calories to maintain weight, and we all know that can be a challenge. You can however choose your nutrition and PEG food with the above in mind and avoid the milk protein packed supplements most of us are steered towards through the rough periods. By carefully choosing your nutrition now and during recovery, you should find your rebound after treatment is faster and maybe more thorough. No guarantees as we all get affected in varying degrees, but every bit of proactive thing you can do, will help in some way, be it diet, exercise, spiritual or mental gymnastics. Do everything you can.

I know it's a lot to take on board for many of you, but with support from your family, friends, carers and of course the great people on these boards, you can hit this cancer from every side, beat it back and build a healthier you for your new life. You are worth it.

Scambuster

ekdennie

Scambuster said:

To everyone going through or about to start treatment
Just a note to those about to start or recently started the journey through treatment, I usually chime in somewhere about here to throw some ideas out which may lead to better outcomes for all. This is basically about nutrition and diet and the effect on your general health and ability to beat this disease and also reduce incidence of recurrence. While most of your Doctors still do not believe nutrition plays a significant part in this fight, I do believe it plays an important role. I figure that something wasn't quite working right for us to be affected by cancer, then our bodies are subjected to very heavy and distressing treatments which weaken our immunity and general condition, then we are expected to continue as we were, in a new weakened state. My view is we need to rebuild the body so that it is actually stronger and more able to resist and fight disease, than when we were first invaded by cancer. I am generalizing of course as there are many known and unknown reasons for why we have been affected by cancer. Many of us were very fit and healthy, others no so fit. My aim here is not to answer those questions, simply to use common sense and look at some simple behavior and lifestyle changes that may improve our chances of a long and healthy life after cancer.

Nearly all the complimentary and alternative studies and literature pretty much agree that diet and nutrition are important.

The simple rules being that we should eliminate all animal proteins (meat, fish & dairy), unnatural sugars, processed foods, fried foods and basically consume fresh fruits, vegetables, nuts and pulses. This also means consuming as much food in the raw state (i.e. salads and fruits) as possible. I also believe we may need additional support in the form of supplements to boost the bodies vital organ functions and restore and rebuild our all so critical immune systems. Basically give the body everything it needs and nothing it doesn't need. 'Moderation' is not a valid argument, just an excuse. Moderation is like putting smaller bullets in the pistol when playing Russian Roulette, they are still bullets.

There are many books quoted on these pages. i personally found 'The China Study' to have helped guide the way to going Vegetarian. There are many other good reads but the point is that once all the dots start to join up, then it is just good sense to look seriously at this path. The good thing is there no real downside and if you do go down this path, then re-evaluate after say 12 months and at least you have given it a go and you will see the difference the change in diet has made.

The change in eating is a bit of a challenge at times but it is often a a case of mind over matter, but I figure my wife and 2 little kids deserve my very best attention to making sure I stay around so the choice at meal times becomes very simple.

For the next period, some of you will need to focus on just getting in enough calories to maintain weight, and we all know that can be a challenge. You can however choose your nutrition and PEG food with the above in mind and avoid the milk protein packed supplements most of us are steered towards through the rough periods. By carefully choosing your nutrition now and during recovery, you should find your rebound after treatment is faster and maybe more thorough. No guarantees as we all get affected in varying degrees, but every bit of proactive thing you can do, will help in some way, be it diet, exercise, spiritual or mental gymnastics. Do everything you can.

I know it's a lot to take on board for many of you, but with support from your family, friends, carers and of course the great people on these boards, you can hit this cancer from every side, beat it back and build a healthier you for your new life. You are worth it.

Scambuster

my dr's opinion is not quite the same
scambuster and everyone-
I talked at length with both of my doctor's about nutrition. they both agree with you as far as eating fresh fruits and veggies as close to a natural state as possible, but they both said to make sure that each meal I eat is at least 1/4 protein. my ENT suggested eggs for when the eating was rough, but he also said to eat beef when I was able to, although he did say to try to avoid processed foods. my radiation oncologist also suggested 1/4 protein per meal...more if I could manage it. protein helps our body heal and she recommended milk as a good source of protein while I am healing. whole milk mixed with extra protein powders, such as scandishake or carnation instant breakfast.
both of my doctors recommend eating a wide variety of foods when I am able to, including meat. This type of cancer has no known cause, it can occur in anyone, even young children and a bad diet did not lead to it. eating healthy is always a great option, but I do not believe that becoming vegetarian is the answer for everyone, I am glad that you feel it is the right choice for you and that you want to pass the word on, but my doctors both disagreed when I asked them. we have been very focused on my diet and what I will be eating as the weeks go by, but they don't feel I need to go so far as to cut meat out of my diet.
best of luck to everyone!
elizabeth

cdtoledo

ekdennie said:

Bob,
That sounds just perfect...I can also use it to exercise my kids during the winter when they want to go outside and I need them to be inside! I will getting one very soon! I love using my mom's small trampoline when I was younger...I just might have to make sure my husband and oldest son doesn't see for the first little while...loose belly skin from the baby and from so much weight loss! I can imagine my son asking why my belly moves like jelly! hehehehe
elizabeth

9 Treatments Down 23 to Go
Two more radiation treatments this week - and I will be a third of the way home.

My routine starts out each morning at 6am. I wake and try to get something in my stomach. At 6:30, I take my anti-nausea meds Zofran (daily), Atavan (daily), and a steroid (3x per week). I have to clean my peg feeding tube and put the flouride trays in my teeth before grabbing a quick shower. I arrive at the cancer center at 7:30 to receive an Ethyol (nausea causing med that is supposed to protect my salivary glands during radiation) injection into each arm - then chill for 45 minutes while they take my blood pressure every ten minutes. At 8:20 - they clear me for radiation - and I get on with the daily mugging. I describe head and kneck cancer radiation to friends as a 30-40 minute voluntary daily abduction of being kidnapped, gagged, blindfolded, confined and stuffed in the trunk of a Yugo. But they do let you bring your own music; and I get to keep my pants on under my gown.

At first - I wasn't prepared to handle how confining the mask was - but I'm used to it now. Nausea was a problem the first week - and I refused the Ethyol until my oncologist came up with a new plan for the nausea - which thankfully - he did right away - and it's been working OK. No real pain yet - and I'm still eating on my own - but my saliva is getting thicker - and there's a bad taste in my mouth all the time. I'm using the water/salt/baking soda rinse - along with a rinse called Biotene that helps as well. I'm using Aloa on my skin. The areas behind my ears are really getting burned fast - and my left ear is already overly sensitive from my surgery - just something that I'm going to always have to deal with - I guess. My oncologist says that I can probably expect the soar throat/mouth and swallowing issues to begin in the next week or so. I'm doing everything that my speach therapist and dietition tell me to do. When I get home - I usually nap until lunch time.

I hope everyone is doing well. Keep the day to day focus - and knock them down one day at a time. You're all in my thoughts and prayers each day - wishing everyone the best.

ekdennie

cdtoledo said:

9 Treatments Down 23 to Go
Two more radiation treatments this week - and I will be a third of the way home.

My routine starts out each morning at 6am. I wake and try to get something in my stomach. At 6:30, I take my anti-nausea meds Zofran (daily), Atavan (daily), and a steroid (3x per week). I have to clean my peg feeding tube and put the flouride trays in my teeth before grabbing a quick shower. I arrive at the cancer center at 7:30 to receive an Ethyol (nausea causing med that is supposed to protect my salivary glands during radiation) injection into each arm - then chill for 45 minutes while they take my blood pressure every ten minutes. At 8:20 - they clear me for radiation - and I get on with the daily mugging. I describe head and kneck cancer radiation to friends as a 30-40 minute voluntary daily abduction of being kidnapped, gagged, blindfolded, confined and stuffed in the trunk of a Yugo. But they do let you bring your own music; and I get to keep my pants on under my gown.

At first - I wasn't prepared to handle how confining the mask was - but I'm used to it now. Nausea was a problem the first week - and I refused the Ethyol until my oncologist came up with a new plan for the nausea - which thankfully - he did right away - and it's been working OK. No real pain yet - and I'm still eating on my own - but my saliva is getting thicker - and there's a bad taste in my mouth all the time. I'm using the water/salt/baking soda rinse - along with a rinse called Biotene that helps as well. I'm using Aloa on my skin. The areas behind my ears are really getting burned fast - and my left ear is already overly sensitive from my surgery - just something that I'm going to always have to deal with - I guess. My oncologist says that I can probably expect the soar throat/mouth and swallowing issues to begin in the next week or so. I'm doing everything that my speach therapist and dietition tell me to do. When I get home - I usually nap until lunch time.

I hope everyone is doing well. Keep the day to day focus - and knock them down one day at a time. You're all in my thoughts and prayers each day - wishing everyone the best.

radiation over for me
hey cdtoledo,
I finished my radiation treatments just about 3 weeks ago. I didn't get thick saliva until the last couple weeks of treatment and it is starting to get better. If you develop sores, let your dr know right away. i had to be on morphine for about 4-5 weeks. I am off it now, and most of my sores are gone...I have three that just don't want to go away yet...but they are the same ones that have been here the longest.
I have the bad taste as well. It is worse when I have a cold, which I have right now...too much mucus gathers on my mouthpiece, but I just use extra Polident rinses as well as neil med sinus rinses and it seems to help a lot. I am also using Biotene, but I am mostly using the toothpaste. regular toothpaste burned when I would brush. I am still using my caphosol when my saliva gets too thick...it helps a lot, it also seems to help with the sores.
I am happy to hear that your treatment is going fairly smoothly. I don't know if they are having you do jaw exercises...but if so, do them! I had to add in extra exercises as my jaw began to get painful to open fully. It isn't back to normal, but it is so much better than 2 weeks ago!
I am glad you are still eating on your own! You may find that you will be napping more often these next couple of weeks. My ears got pretty red during my treatments, and by the end you could tell I had radiation treatments...although it made me wish I lived in Colorado...because it kind of looked like windburn from too much skiing! across my nose and cheeks, on my ears, and little on the back of the nape of my neck!
One day at a time is a good way to look at it. Right now I am just working on healing from the treatments. I will see my doctors again after christmas (rad onc) and the new year (ENT). until then I am working on eating and healing!

I hope you and your family can have a very joyous holiday season. There are so many things to be thankful for and so many wonderful blessings. I am so happy that if I was going to get cancer, that I got it at a time when there were good surgical and radiation treatments available. the arthroscopy that my ENT did, left no visible scars (just 5-10 years ago they would have had to remove my nose and then try to put it back on for the same tumor removal) and the IMRT (I am so thankful that this kind of technology exists, to help minimize side effects!) gave me sores, but my saliva is thicker, but not in a bothersome way!

Wishing you the best! You and your family are in my thoughts and prayers! I hope the next third + a couple of days goes smoothly!

doc1955bob

ekdennie said:

I have/ had mucoepidermoid carcinoma too
Hi nicole. I am also 31 years old. I was diagnosed with mucoepidermoid carcinoma of the minor salivary gland (hard palate) in june 2010. mine started out as low grade, but after my surgery it was bumped up to intermediate grade. I am not having chemo like you are, but I am on day 14 of 30-35 radiation treatments.
I completely understand about being scared. there are days when I am scared out of my mind...others when I just feel so calm. my emotions are all over the place.
I have decided that the best way for me to cope is to view my treatments as a method to scrub away any cancer cells that my surgery couldn't guarantee were gone. I "evicted" the cancer through surgery, and now I am doing a deep clean with the radiation.
I have been having some bad days lately, but I am doing my best to smile through it. I hope you can do the same.
feel free to ask me any questions you have. I will do my best to answer, but I do not log on every day...I am too busy with three small kiddos. (8 months, almost 3 years, almost 5 years).
good luck and hugs! wishing you strength for the battle you have begun and the battles that you will still fight. sending you hope for a cancer free future. and praying that you can find a way to smile through it all (I know I sure am trying!)
-elizabeth

my daughter's fight with MEC
Dear Elizabeth,
Nice to get acquinted with you, who had gone thro' the surgery and Radiotherapy for Mucoepidermoid of Palate. I was inspired by your attitude and I hope you will guide me and my daughter. My 20yr old daughter daignosed with MEC of minor salivary glands of hard palate. Surgically removed Oct 2009. But doctors didnt advise radio or chemo. I dont know whether to just keep watching or go for radiothrapy as you were treated.

doc1955bob

cdtoledo said:

New Member
I just joined the site after finding this thread. I'm a 40yr old husband and father of three; and I found out that I have cancer in early September. Two and a half weeks ago, I had surgery to remove a tumor from the minor salivary glands in the back of my mouth and three areas of concern from the lymph nodes in my neck. The good news from the surgery - they were able to remove the entire tumor without much problem and they didn't have to do a skin or tissue graph to repair my mouth. The not so good news was that the tumor ended up being about double the size they expected and the cancer had spread to my lymph nodes. My official diagnosis from the tumor is Stage 4 High Grade Mucoepidermoid Carcinoma. Next up - I start 6.5 weeks of radiation treatment in mid November. I'm recovering well from the surgery - eating and talking well - and my spirits are good.

I was happy to find this site with some others who are going through similar treatment to compare notes. I will be happy to share information about my treatment if others are interested.

Take care and stay strong all.

Chris

Hi Cris,
Sorry to
Hi Cris,
Sorry to know about your condition. I hope you had gone for your radiotherapy and better now. My daughter also had MEC of hard palate, removed surgically in Oct 2009. No radiotherapy. She's Ok now.

doc1955bob

rose_hadds said:

mucoid epidermoid carcinoma long term survivor
Hi there - sorry for the journey you have started. I wanted to give you some positive news.
My brother is a 15 year survivor of this cancer. He had radical head neck surgery and 30 rads and he has remained cancer free. Medicine has come a long way in 15 yrs - He beat it and so can you!!!

Leanne - I am also a survivor of a different cancer - so I can relate to what you will go through...stay strong!!! You can do it!!

nice to know
Hi Rose'
Nice to know your brother survived for 15 years after Mucoepidermoid. Last Oct 2009 my 20yr daughter was operated for MEC of hard palate. I hope she is free from cancer now.

ekdennie

doc1955bob said:

nice to know
Hi Rose'
Nice to know your brother survived for 15 years after Mucoepidermoid. Last Oct 2009 my 20yr daughter was operated for MEC of hard palate. I hope she is free from cancer now.

hey doc1955bob
i had it removed from my hard palate in august of this year. I have been told that I should be cancer free or at least with no evidence of disease (NED)...I wish the same for your daughter!