Mucoepidermoid Carcinoma

Welcome
Hi Nicole. So sorry for your cancer situation but glad you found this board. There are so many caring and helpful people here. I'm 39 and have nasopharyngeal cancer, also rare but I don't think as rare as yours. I imagine the treatments are similar so I'd be happy to share my experiences with that so far anytime it might be helpful to you. I've only been getting treatment for a few months now but a lot happens in a short amount of time. For me, diet and exercise have been huge in minimizing the side effects of chemo and restoring my body to health. Again, sorry that you're going through this. Welcome here though.

Bob

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

nkimber said:

Hi Elizabeth!
You seem so strong and upbeat... I truly feel that makes a world of difference. I would say that so far (with the exception of week 1 after diagnosis) I have been ultra positive about 90% of the time. The rest? Total roller coaster! The plan for me is Chemo first (the beast has spread to my lymph nodes), then surgery and/or radiation. My tumor is a bit low and starts from the inside of my trachea, so my doctors are trying to spare me a fairly extensive surgery. I truly feel incredible right now, and am trying to make the most of it before my next chemo treatment next Thursday.

Had a little speed bump yesterday... Lost my hair I am lucky to have a beautiful wig and an amazing hairdresser/ friend who made the process as good as it could possibly be, but I have to say it's a little traumatic. You would think I'd be able to deal with something as stupid as this, but I guess it's just the fact that now others will see me differently. That is what I wanted to avoid... I love that there are so many people who care so much about me, but I just don't want them to feel sorry for me.

So, how is radiation going? Stay positive and I know you will be able to get through it with minimal side effects!

Lots and lots of hugs to you... You seem like an amazing mom!!!

Nicole

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!!

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

Nicole & Elizabeth
Wellcome to CSN. I am happy you found this site as the support & friendship are wonderfull. You both are young, strong & positive & will do great! As far as hair go's at first I was devestated to hear that I may experience hair loss, but that was the least of my worries. I did not loose much but decided that maybe it would be one less thing to worry about. Bigger fish to fry. I wish you both my best with your treatment & recovery!
Roz

nkimber said:

A couple more ideas
I was also told that drinking aloe vera drink can be incredibly helpful... not sure if it is true for anythign other than radiation on the throat but thought I'd pass it along. Not the kind you put on your skin

I am going to try to exercise more through this next round of chemo... last time I took about five days off at first, but I am reading so much about the benefits of exercise through chemo and radiation. It can actually help fatigue by giving you some energy, and by helping you sleep better through the night. I know thinking about taking even a walk was difficult last time, but I'm going to make it happen

Round two is this Thursdsay and I plan to exercise before the treatment on Thursday, and Friday and Saturday... the test will be whether or not I feel good Saturday night when my boyfriend and I drive a couple hours away to see a college football game!!!

Lots of hugs and warm wishes to everybody

Nicole

aloe and exercise!
Nicole-
I have been told about the aloe before. I had a professor who used it for IBS. I am sure it would work great for radiation. it tastes yucky, but I have heard some people will gargle with it to help with sores.
I try to do as much as I can and then rest when I get tired. I wore myself out over the weekend and this week though. My mouth sores got pretty bad and I am now on morphine for them, but they are now mostly healed up...I was able to eat some macaroni for lunch today! that made my day to eat something and not to just drink it! My family keeps joking that they want to go on a liquid diet...I keep telling them, why would they do that when they get to eat bread...they just look at me like I am crazy! I have managed to stop losing weight, which is good...I don't want a delay in my treatment, which will happen if I lose too much weight. I hope things are going well for you and that you are able to enjoy the game!
lots of hugs to you!
elizabeth

cdtoledo said:

Nicole and Elizabeth
Thanks for the replies. Both of your positive attitudes and courage is inspiring.

Nicole - It sounds like your tumor was in a tougher spot than mine was for surgery. My tumor also was starting to affect my ability to eat - so it had to come out of there. I'm fortunate that I have a big family and have several immediate relatives in the medical profession - so I had a lot of connections to give me direction with doctors. At first, I thought that I would look outside of the Toledo,OH area for a bigger cancer hospital for treatment, but I was able to get in with the best head and neck cancer surgeon in the area, and he convinced me that he could take care of me. So far - he hasn't disappointed - he's just been terrific. I haven't been quite as happy with my oncologist team, but my surgeon is directing my treatment - and I trust him. After radiation, there's a chance that I still may need chemo at some point - but they are expecting me to have a pretty hard time eating with the radiation - so they didn't want to do both right now. They also feel like there's a decent chance that after the radiation - I'll be in the clear for a while - so that's what we're hoping for. Sounds like you're taking on the chemo with a great attitude and doing well with it - I hope it continues to go well for you - and those little tumors get squashed by it.

Elizabeth - Sounds like our situations are pretty similar. My tumor was in the soft pallet in the very back of my mouth - so that might have made the mouth part of my surgery a little easier than yours - I don't know. My surgery ended up being 5 hours - but 3.5 of that was taking out the lymph nodes in my neck. Initially, they thought that the rebuild of my mouth was going to be extensive and require a prostetic, but they were able to close it up cleanly with just the tissue in my mouth - and now three weeks after the surgery - I'm not having much mouth pain for the first time in a couple months - so that's good - for now. I've lost 18 pounds so far - but am trying to gain some back before the radiation - and in the last week have finally been able to eat just about anything. I know that's not going to last when the radiation treatment starts - so I'm enjoying it while I can. They are going to put a feeding tube in my stomach before my radiation starts - are you using one? I'm getting fitted for my mask this week and next week I'm getting fitted for the flouride trays for my teeth. What you're going through with the radiation - sounds like what they are preparing me for. Since I'm getting it on my neck for my lymph nodes as well - they are waiting a little longer for my incision to heal more. I guess I'm pretty nervous about what that incision is going to look like after the radiation. Thanks for the info on your radiation treatment. I hope things continue to go well as they can for you.

I've been able to stay pretty positve through most of this. I don't like the night before doctors appointments - although I think I've gotten most of the bad news that I can get for a while - and now it's just a matter of getting the treatment going. Through all of this time seems to be moving really fast - even the tough days - so hopefully that will continue to be the case. I've got a big family and a big "work" family - so I started a Caring Bride Site to keep people informed - and that's been great for me - it just makes it so much easier to comunicate with people. I'll try to post a link here for it.

http://www.caringbridge.org/visit/chrisdrouillard

Take care and stay strong all.

Chris

radiation and PEG tube
chris-the doctor is hoping to avoid a PEG tube, as most of my radiation is hitting what remains of my hard palate, my jaws, my sinus cavity and my soft palate and as they were able to block most of my neck and throat, I am not on a PEG tube. I have had some problems with eating and swallowing has become difficult. I use a numbing rinse before and often during my meals. I was on liquids only for about two weeks when sores appeared on my soft palate, my gums, and my tongue. they have mostly healed up. I strongly recommend getting Caphosol. it is a mouth rinse that mimics your natural saliva. when the sores appeared I upped my dosage to 9 times a day, and it has helped so much. When I had any discomfort (discomfort isn't the right word, but it sounds better than pain) in between doses I would rinse with a baking soda and salt rinse. I'll be honest...there were times that suck. there have been times when I have just been too tired or in too much pain. It didn't help that when I couldn't eat last week I was also sick, but this week I can eat and my cold is working on ending...I hope! It isn't a lot of food...but it is some food! I do my own personal happy dance after each meal. I am just so happy that I live in a time where they are able to treat this cancer, where they were able to remove my tumor (about the size of a golfball) from my sinus/palate without removing my nose...they did the surgery with scopes and then opened my palate (it had to go anyway). They were able to save my jaw and my teeth by just burring a part of it away.
I could focus on the things that I can not do right now, but I am not going to let cancer win. The things I can not do now, I will do...just not right now. I fully intend to eat al my favorite foods, and not just soft foods. My tongue has been affected by the radiation and as a result my taste buds are off, but in really weird ways. I can't taste salty foods, and sweet foods vary between being too sweet and being kind of bland. foods with spices in it (like basil or pepper, or garlic) taste strongly...it is a good thing I like garlic! I taste it very strongly.
The prosthetic that I use has been both a blessing and made things harder. I am able to eat, breathe, and sound more like myself with it in, but it hurts (because of the radiation). without it, I sound funny, I can drink, but not eat, and food and liquid go up my nose. this one fits so much better than my surgical one, but it is harder to eat as food gets stuck between it and my teeth, but my old one didn't cover the entire hole!
Chris- I love caringbridge.com. we used it all the time when one of my cousins son's had cancer. he lost his battle with glioblastoma maleforme a year or two ago, but he is my inspiration. he was 12 when he was diagnosed and he outlived their expectations. he had a smile on his face through it all, even when he was in pain those last couple of months. he also had to have a radiation mask. when I start to panic, I just think about him having to be in a similar room by himself with his mom outside the door. he makes me feel brave, he gives me strength.
oh, and I am having IMRT radiation. the side effects are less and the time in "the machine" (as I call it for my kids) is less. I am using Radiaplex RX gel on my skin. I have a couple of scars on my face that are right in the middle of the radiation zone, but I think the gel has helped keep the redness down to a minimum. I strongly recommend it from the beginning. my skin is very pale, and I mostly look like I have been in the sun a little too much, except by the end of the week...when I look much redder. I have to go get my kids to bed. friends and family make all the difference. I hope you can stay positive throughout all of your treatments. I really feel it makes all the difference...that and prayer, lost of prayer!