Mucoepidermoid Carcinoma

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

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

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

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

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

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!

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

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.

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

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.