Cancer Survivors Network

I just finished up my IMRT radiation treatments on Tuesday and yes I did keep my mask. Not sure what I will end up doing with it, but after that experience I just couldn't let it go without taking an opportunity to think about it first.

I did have a moment of panic. The techs did not explain what they were doing and next thing I know they are stretching this hot plastic thing over my face, I about flew off the dang table! After they explained what they were doing and how they were doing it, mask #2 fit just fine.

BILL

i got 2 masks i lost wieght so they had to make another
i use them to strain my pasta and wash my veggies

I lost50 lbs. and a year out an still under weight. I tell eeryone it took me nearly 50 years to get this skinhy. How about you. In drank water and protein shakes for 6 months and then had to learn to eat again. Bread and meat are still difficult to eat. I have my mask. I want to burn it some day.

I am a little claustraphobic and of course finding out I had the big C didn't help, but I told my Rad Oncologist and he prescribed Ativan for me. I had to take either 1/2 or a whole one for almost every treatment. But you know what? Whatever it takes to get through and Git-ur-Dun!!

HEY DLUGO48 if you are still having neck irritation try pure Emu oil. It worked wonders for me.

Be well

im on my 2nd week i do take something ...i call it the chill pill. i wouldnt be able to put that mask on without it..lol and when im done im gonna keep mine and paint the dang thing hang it on my wall..........lmao

I WENT THRU IT TWICE RADIATION 2 TIMES A DAY ALONG WITH CHEMO 2 TIMES A DAY 9 YEARS AGO & 4 YEARS AGO. THE FIRST TIME I HAD MY MASK MOUNTED LIKE A DEER HEAD AND HUNG IT ON THE WALL.
WHEN I HAD THE RELAPS. I TOOK IT DOWN AND BURNED IT. I LIKE YOU HAD TO TAKE A CHILL PILL ALSO
DO NOT GIVE UP NEVER GIVE UP!!!

What kind of cancer did you have that you got a relapse?

I know the feeling.
I took zanex the first week.
Finally I could handle the anxiety( not completely, but enough to focus on the process ans not my anxiety )finished the radiation and chemo begining of april 2009
Good luck to you...Blue Skies...Richard

jkinobay that sounds like $$$ in peradise im checking out the total lunar eclipes its awesome. best things in life are free this is one of them,the heavens in motion.I had my external radiation back in nov. 2006 i used alovara gell over the counter the cheap stuff, worked better then the 8 ounce 30$ coat lotion/gell i bought.thanks for your info.jerry mtc survivor

I was 13 when i had my mask fitted and I was so scared that i made my dad make one first. LOL

dlugo48, i didn't keep my mask as I didn't want any extra reminders of what I'd been thru. I did panick twice and had the girls take it off so I could catch my breath. After a few minutes I was able to get the treatment.
debbie

Finished my chemo and radiation 4 weeks ago, yes i had two panick attacks on teh table, where they had to stop, i had teh phlem thing going on and was at the pioint feeling like i was choking to death. Right now I have mixed emotions on my mask, i want to burn it emotional, yet after reading the articles here i may keep it...as a badge of honor, can anyne tell me when this phlem thing subsides or stops, I'm tired of the soreness at night, they tell me this is from sleeping with my mouth open, to drinking water and spitting all day, any positive reinforcement here. Thanks Guys, What a Great Site!

After they made my mask, which was terrible but I got through it, my Dr. told me the angle was wrong and they had to make another one. Without even thinking, I immediately backed into the corner. Dr.knew what was up and was very re-assuring. Prescribed adavan for the re making and my sessions. I tried to go to one of my later sessions without the meds and couldnt do it. I'm not claustrophobic in small rooms but couldn't handle the mask. I did keep mine. I have it hanging on a wall with a cigarette sticking out of the mouth area. Don't be ashamed if you panic, it happens to many patients.

After they made my mask, which was terrible but I got through it, my Dr. told me the angle was wrong and they had to make another one. Without even thinking, I immediately backed into the corner. Dr.knew what was up and was very re-assuring. Prescribed adavan for the re making and my sessions. I tried to go to one of my later sessions without the meds and couldnt do it. I'm not claustrophobic in small rooms but couldn't handle the mask. I did keep mine. I have it hanging on a wall with a cigarette sticking out of the mouth area. Don't be ashamed if you panic, it happens to many patients.

LOL, I never thought of it like that. I saw mine more like chickenwire, enough chickenwire to keep the big chicken on the table!

BILL

lol.......i put a pic of me wearin mine in the gallery.....man i hate that mask.....but its still goin on the wall,,,,,lmao

I also don't know why I kept it....lobbed it to the back of a high clset shelf and occassionally freak myself out when i found it. Want to get rid of it, but is not the sort of thing you put in the trash! How many years do you think it would take to biodegrade? So the big question - what do you do if you kept it, but don't know what to do with it when you want to get rid?

Have to say, although I hated it, it was a turning point in my life as my life has never been the same since I had it - my whole way of swallowing, the constant sniffs, hearing aids and tinitus, my unique way of keeeping balanaced...it is really part if the new me that after 8 years shows no sign of going away.

I did keep my mask, but freaked my wife out so i put it in my office at work - good conversation piece for coworkers and visitors that smoke. Have been away from there about a year and need to get it back.

No way, was just so happy to walk out of there for the last time, have no idea what they did with it, never want to see that place again. They want to do a PETscan, I don't think so. Has anyone had it?

Definately get the PET/CT. They call it "God's GPS for cancer". It covers eyes-to-thighs. You have to fast before it, they inject a radioactive glucose. When fasting, the only cells that will uptake the glucose are cancer cells, so they show up no matter how small. It is a great way to know you are still cancer-free or to early diagnose a problem if there is one.

GET IT>......................JK

A Pet Scan is nothing to be afraid of......look up the procedure online. If your Doctor suggested it.....you should take his or her advice as he or she got you this far! I have had them and I would have them again if it meant preventative care. Good Luck, Good Health and God Bless!

HELLO TO MY 1 ST. REPLY
YES I JUST HAD A PET SCAN 3-4 WEEKS AGO ! IT LIGHTS UP ANY AND ALL CANCER THAT MAY BE IN YOUR BODY ? I HAVE NASOPHARENGEAL STAGE 3
WORST THINGS THEY TOLD ME IS : YOU HAVE TO GET ALL YOUR TEETH PULLED AND THEN YOUR HAIR WILL MOST SURLEY FALL OUT , AND YOU ARE GONNA HATE THE DR.S AND WISH YOU WERE DEAD AND THEN HE SAID THE RADIATION WILL BURN YOUR TASTEBUDS OUT OF YOUR HEAD AND THE SALIVA GLANDS TOO ! SO, I ASKED FOR HONESTY AND THAT MASK ? O M G !!!!!!!!!!! I CANT HARDLY BREATHE OUT OF MY NOSE AND WHEN THEY PUT THAT THING ON MY FACE I THOUGHT I WOULD SUFFOCATE AND I CRIED SO HARD AND SHOOK SO BAD AND SHE FINALLY TOOK ONE OF THE PADS ?OUT AND THAT GAVE ME ABOUT 1/8 OF AN INCH SPACE AWAY FROM MY MOUYH ! IT WAS HORRIBLE ! I START CHEMO NEXT THURS. JUNE 11 TH AND MAYBE MONDAY WITH THE RADIATION >? THIS ALL STARTED WITH A LUMP ON MY LEFT SIDE OF MY NECK , WORSE PART OF ALL , I HAVE NO INSURANCE , BUT THAT IS THE LEAST OF MY WORRIES NOW ! I JUST RECEIVED MY DISSABILITY DEC. 2008 WITH NO INS. BECAUSE I AM 61 YRS YOUNG AND GOT THE DISS. IN 4 MONTHS TIME ! SOOOOOOOO>????
WHAT A GREAT RETIREMENT PARTY THIS IS GOING TO BE ! I HAVE TO HAVE 6 WEEKS OF RADIATION AND 3 CHEMO TREATMENTS AND AFTER THE RAD.IS OVER I HAVE 3 MORE DOUBLE DOSES??
MY DR. SAID I WONT HAVE A FEEDING TUBE BUT WILL BE ON ALL LIQUIDS? I GUESS I WILL LIVE OFF MY FAT ?? I HAVE BEEN HAVING A TERRIBLE TIME WITH ALL THIS HORRIBLE NEWS ! I KNOW IT COULD BE WORSE BUT GEEEEEEEEEEEEEEEEEESSSSSH ! I AM SUCH A CRY BABY THESE DAYS AND THE FEAR IS BEING PRAYED AWAY {THANK GOD ! } SO ?? ANY HELP ANYONE CAN GIVE ME AS TO HOW FAST I WILL GO DOWN HILLL AND HOW FAST I WILL START BACK UP TOWARD THE GOOD SIDE ? AND WHEN WILL I FEEL LIKE LIVING AGAIN ? MY NIECE {MY GODCHILKD} IS GETTING MARRIED IN DEC???????HELP

keep your head up i was stage 4 with no chance and i BEAT IT !!!! if you need any help with any aspect of the treatment or any emotional support i am here for you

Woo Thunder 101, lol this is Paaatriot101 (Coincidence on the 101?) I was so glad to see that you said you beat IV. Long story short I have just been diagnosed stage IV B, and have been unable to find anyone who had beat that stage:) You Just made my night, cool on the 101.

Me too. I had stage iv golf ball size tumor growing on my right tonsil. 2 chemos and 39 radiation treatments in june, July Aug of 2008 and I am still hear.
viking

Dear antmeme17, hang in there! It's not the end of your life, even if you may think that at times. I found a wonderful product called Metagenics Medical Food. I found I was malnourished with Boost and Ensure and that is not what you need when you are trying to heal from chemo and radiation therapies. I drink it mixed with Ben and Jerry's Phish Food ice cream, whole milk, a banana and a 1/4 whole peeled pineapple. Yummy - and it provides you with all the nutrients, minerals and vitamins you need every day as well as about 1500 calories. Believe it or not, if you can keep your weight up you will heal much faster. In the middle of healing time you'll feel like it'll never end but what kept me going is "this, too, shall pass". And it does. I am now 2 and 1/4 years past my chemo/rad therapy for stage 4 tonsil cancer. I am now able to eat some soft foods as well as my Metagenics suppliment drink and am no longer struggling with malnutrition. Keep your chin up and smile, every day. You'll feel better and so will those around you. Keep your godchild's upcoming wedding in front of you as a goal to work toward so you don't get bogged down with the day to day trials. Keep us posted with your progress. What are you going to wear?

Hi Antmeme17,
I was wondering how you are doing now? I know you made this post back in June so I wanted to see if you had started treatments and how that is going?
My mom was diagnosed with nasopharengeal cancer about a month ago and starts treatments on thursday. Any insight that I could pass onto her would be great!

So sorry and no doubt like everyone here, I know the fear and the shock of it all. I cried every day for months - the whole family got used to it, often cried with me, and learned beautifully how to just let whatever needed to come out that day express itself and we'd move on.... Initially I felt so much shock, I felt as if all of a sudden I had been robbed of my good health and terrified of the future. But somehow getting started on treatment helped, I thought of it as getting on board the train to wellness. Doing what needed to be done and taking the very best care I could of myself, letting others help, and NOT thinking about the future was all of great benefit. Mine was staged T4 and it is possible I have metastatic nodule, but it is too early to tell. It has only been 7 months since my journey with this cancer began - it took me roughly five months to really start feeling stronger again. Today I am in better shape than I had been in a few years - so I would definitely plant some goals every few months, like plan on enjoying that wedding. Be strong, walk tall, and look for a little joy in each day. All the best to you! jil

So sorry and no doubt like everyone here, I know the fear and the shock of it all. I cried every day for months - the whole family got used to it, often cried with me, and learned beautifully how to just let whatever needed to come out that day express itself and we'd move on.... Initially I felt so much shock, I felt as if all of a sudden I had been robbed of my good health and terrified of the future. But somehow getting started on treatment helped, I thought of it as getting on board the train to wellness. Doing what needed to be done and taking the very best care I could of myself, letting others help, and NOT thinking about the future was all of great benefit. Mine was staged T4 and it is possible I have metastatic nodule, but it is too early to tell. It has only been 7 months since my journey with this cancer began - it took me roughly five months to really start feeling stronger again. Today I am in better shape than I had been in a few years - so I would definitely plant some goals every few months, like plan on enjoying that wedding. Be strong, walk tall, and look for a little joy in each day. All the best to you! jil

So sorry and no doubt like everyone here, I know the fear and the shock of it all. I cried every day for months - the whole family got used to it, often cried with me, and learned beautifully how to just let whatever needed to come out that day express itself and we'd move on.... Initially I felt so much shock, I felt as if all of a sudden I had been robbed of my good health and terrified of the future. But somehow getting started on treatment helped, I thought of it as getting on board the train to wellness. Doing what needed to be done and taking the very best care I could of myself, letting others help, and NOT thinking about the future was all of great benefit. Mine was staged T4 and it is possible I have metastatic nodule, but it is too early to tell. It has only been 7 months since my journey with this cancer began - it took me roughly five months to really start feeling stronger again. Today I am in better shape than I had been in a few years - so I would definitely plant some goals every few months, like plan on enjoying that wedding. Be strong, walk tall, and look for a little joy in each day. All the best to you! jil

Sorry for the double entry - it was so slow to post...is there a way to delete an entry?

First, dont write in caps in represents you hollaring at everyone. You will be fine, hang in there. I have been through it all, and still here.

Hello Jeepie

Yes, I did have a pet scan. I am 6 years out and was DX in 2003 with SCC and had 3 lymph nodes removed. I now see my docs twice a year. The first 5 years it was every 3 months. I alternate between PET scans and CT Scans with contrast. Neither one is a big deal. If you have had an MRI or CT scan you can get a PET scan. The only difference is that you get a small amount of Nuclear medicine injected into your arm, sit quietly for 2 hours, which go by quick, have the scan and they do the entire body versus just the effected area with CT and MRI and it takes about another 1 to 2 hours and your done. The thing that is great about the PET scan is it gets down to cellular level and tells the docs if you have any cancer cells in your body before they turn into a tumor. I insist on this scan every other year and my doc. tells my insurance company it is needed and viola they approve it. Trust me, it is the best first defense in detecting cancer and stopping it before it starts. It is not painful, just boring.

Pete

I have posted a few pictures of mine on a talk back board elsewhere in my life. Anytime someone posts that they just can't seem to quit smoking I post it along with a VERY detailed message of what comes with it. So far about 4 people have said it haunts them when they even think of lighting up!

BILL

im realizing that i made a big mistake i should of taken my kids to see what i was going through during my external radiation treatment,while i was being strap down to a table with the mask.but i did not want to infringe in their privacy or scare them.plus im so freaking private.maybe by seeing this they would consume the right foods and see life in a different way.i should of kept the mask as a reminder.live and learn.

Hello USA from Bonnie Scotland.

Yes I kept mine - had it since 1995 - and when Im a bit down I go and look at it and remember what bad times really were. It soon brings me back into line!!! I lost (what we call here in Scotland) my "lollipop" that I used to have to put in my mouth every radio blast. God knows what the guy who bought our house will think if he found it!!!

I had nasopharyngeal cancer with 4 tumours in my neck but Im now clear.

The reason im on this site is that I cant find one similar in GB.

Great site here and look forward to more visits to share with others the trials and tribulations of The Big C

Regards to all

Ron

It is called http://share.macmillan.org.uk/Share/Forums/?topic=1006252

oh by the way, I didn't keep my mask. My neck was so burned , I mean

burned like a crisp I almost couldn't go through with the last treatments

a reminder of which, personally, I can do without!

Hi,

My husband didn't keep his mask and didn't even think about it.....possibly because on the way for his last day of radiation my doctor left a message on my cell phone that I had basil cell carcinoma which totally freaked me out. I am fine and treatment went great; unfortunatly my husband is still suffering greatly! Cancer over but keeps getting aspiration pneumonia and now they want to replace his peg tube with a J tube and am having a very difficult time finding info out on that................one dr said he wouldn't do it and others say go for it! Our daughter who is now teaching nursing does not want him to get the j either??????? Very confusing!

There is most likely a picture of you on the table in your file, they use it for alienment(sp?) during your treatment, it is not your mask, but shows you in it.

BILL

I stop in the chemo area to see my favorite nurses! The biggest problem I have as a "big strong man" is not breaking down and crying my eyes out when I am in there talking with the people I see as Heros in my life, I love them each and every one!

I had it for years after I was done but my house was damaged in a hurricane and with all the mold I had to get rid of it.

...for your understanding and support. Your husband is a lucky man!

My wife, a nurse who should know better, also cried when I brought the mask out with me to the waiting room (I took valium and couldn't drive myself home :) ). I live in a Navy town, and perhaps that is why someone who had survived it donated a brass bell that was attached to a wall. When you finished, you were permitted to ring the bell, and that I did! With relish (little knowing that would be the only relish I had for quite some time :) ).

I kept my mask, too, macabre as it seems to me. At Halloween I put it in a window and consider it the scariest thing on the block. Otherwise, it is hidden away. Keeping it seems like a perversion in a sense, as it serves no purpose but to remind me of the 'torture' you reference.

So, I can't say why I keep it. It is certainly not a trophy to me.

But keep it I do.

Take care,

Joe

personally, I just don't want to be reminded of those days. The terrible burns on my neck, the damaged saliva glands, the burns to my tongue and under the tongue....no if I never see a "mask" again that'll be too soon for me!
MArk

I hope this doesn't sound too flip, But my 85 yr old mother never thinks I visit enough. She also has Alziemers and her short term memory is really bad. So I took my mask and put it in her easy chair. That way she would remember why I wasn't there all the time and I could get the mask out of my sight.
Having those treatments with the mask has got to be the most diabolical things ever. The only good thing I learned about the process is the techs had to have masks made for them and get strapped down too so they would know what it's like. All the techs at U of MIch were awesome. Tom

5 years out from my cancer and my mask is in my closet. And I can't say why I kept it. I was more than happy to get rid of the mouth mold that would choke me during my radiation treatments. I guess it was a matter of showing my wife and kids what I was going through during my treatments as I was alone during my 5 weeks away from home. I also have copies of all my medical files and some x-rays and MRI films. Its all a reminder of when my life made a complete change from a very active member of society to an individual that struggles daily. Kinda like keeping my old snowmobile racing helmet or items from being in the military. I guess I hold on to good and bad reminders. Some people just prefer to have the good stuff around. But it was a big part of my life good or bad. Slickwilly

Dec 30th was my last head/neck radiation treatment and I had to force myself to go to radiation, sick or not as I didn't want to prolong treatments any further. My last 2 days were "make-up" days for days I missed earlier due to severe nausea, vomitting, etc. When I was done, I was thrilled to get the mask so I could show my family and friends what it was like to be bolted to a table with this mask ... more like a cage ... unable to move or swallow!

I think of my mask/cage as a trophy, like an Academy or something, for enduring one of the toughest experiences in my life. It's hard to describe to others what it's like, but showing them the cage, letting them put it on helps them understand how scary it can be. They always ask, "Does it hurt?" and it's hard to explain the sense of panic from confinement, feeling nothing during the procedure, but the pain from the accumulation of radiation exposure.

Thank God I made it! The burns and blisters are no longer bleeding and I'm starting to form new skin. I still can't taste food, but at least I can keep it down so I'm regaining some strength.

I will keep my trophy as a reminder of what I, we, endured last year and the hope and promise of a better year, this year!

Happy New Year to all of you and Hope this will be a better, healthier year for all!

I'm a newbie--skull cancer that didn't (thank God) hit the brain.

Radiation therapy only, 7 weeks 5/week.

They told me to expect massive fatigue after therapy over. Further, that recovery might begin after two months.

Fatigue and muscle weakness along with coordination difficulties still with me ten weeks after radiation finished.

What was your experience?

I took my mask, but never planned to use it as a memory trigger. I destoyed it by placing in the middle of the street, saying a thank you prayer to god then I ran it over with my truck. It felt good!!!!

on my final day of radiation,they asked me if i was going to keep it and if so;what i would do with it,if anything.i said yes i was keeping it and i would turn it into a scarecrow for my garden.to me it was the scariest thing i'd ever seen...but apparently birds have a different perception of"scary" they land right on it!!

I like what you did with your mask!!! I had a party with family and friends and we burned it!!! It was a great feeling!
As of May 31, 2009 I have been cancer free for 8 years.

I wish I had done that...I just told them no.

Great story

I like your daughter's idea better. A talisman. And if you can't poke fun at it once in awhile, this cancer thing, what good is it anyway?

Take care,

Joe

PS I had missed Victor's post originally. Now I am perpelexed, however: if you strain stuff through the mask, do you still need to microwave it?

ive had a few people who thought it was a little too adams family-ish.
Been asked about the radiation it might contain.
But they are great for rinsing veggies and straining potatos
It gets a little creepy looking with spagetti thou.
Wondered about putting it in the microwave?

spaghetti, HA!! now thats a great one!!!

This is the first thing that has made me smile about my mask!

My last treatment is on March 18th. Eating is hard, all mental now. Skin on neck and ear is real dry. My brother is going to paint my mask like an old school Hockey Goalie mask. Going to have some with it.

GLAD YOU ARE ALMOST THERE! MINE WILL BE MARCH 31- GETTING HARD TO FIND THINGS TO EAT OTHER THAN YOGURT AND SHERBERT- USING AQUAPHOR ON MY NECK SEEMS TO HELP- ALSO ALOE VERA

I kept my husband's mask. Every time I see it, I am reminded of how tough this has been. I don't ever want to forget. It broke my heart to see him locked to the table every time. He took Ativan before each session. The staff at HUP were so kind and compassionate and explained things any time I asked. He had a PEG tube put in before treatment. Smart move. He completed his radiation a year ago. It has been a challenging year with a few hiccups along the way, but a very good one as well. He lost 50 lbs and today he is maintaining his weight, eating better, hitting golf balls and is cancer free. Salivation has returned and taste is back to about 90%.

My husband drank milkshakes, ate ice cream, puddings, cream soups and apple sauce. Hang in there. Someday this will be a distant memory.

I kept my mask, at 1st I thought I would give it away as a white elephant gift, now I'm not sure I will do that.

my dad kept his mask and also loves the idea of using it as a vegie strainer lol my mom has some objections to that

elaine

Sorry to hear that you were layed off. They say when one door closes and window opens. New things ahead and a healthy start! Good Luck!!!
Sirena

THERE IS SOMETHING BETTER OUT THERE FOR YOU- I just finished 33 radiations treatments on tues and yes I kept my mask- they gave me a certificate of merit for completing my treatment - my oldest son and my best friend went with me for the final treatment - brought me flowers and everyone cheered! Glad its over- just hope it worked. Mine was on my vocal cord- hard having patience for it to heal- this is the worse i;ve felt thru it all- no energy at all. My mask is a symbol of triumph - I truly believe I beat it- guess we will see

Same here, Spillercj! I got mine last year and decorated it for Halloween and Christmas. I'm thinking of painting it for my crafts room wall. When I was undergoing treatment, I thought about the time it would go in the trash - but now I look at it and think how wonderful it was to fight the fight and survive.

My husband completed radiation last month for oral cancer. What an ordeal before, he had his first surgery to remove his upper jaw and a portion of his soft palate and 2 months later had surgery to remove tumors in his cheek and 27 lymph nodes. 4 of these were malignant, thus he had to have several chemo treatments and 34 radiation. He got very sick half way through since he could no longer eat (had a g tube inserted) and finished treatments like a trouper (he is 76 years old). We saved the mask and I hope to do a presentation at our school using it as a tool to explain to young people what can happen if you start smoking. Surely when you explain to them how you get screwed to the table for 30 minutes some of them will think twice about starting to smoke. Guess I best not tell them that my husband is not a smoker or drinker.

Congrats to your hub on his survivorship! And yeah, it is probably a good idea to keep out the part about how he isn't a smoker or drinker, although that makes him a 5%er :).

Congrats to you, too, for using this as a positive experience, a useful one, for the youth in your community. I have been known (regrettably, in my wife's opinion) to walk across the street when I see teens smoking and lifting my shirt to show them my j-peg tube (g tube, i can't figure out really which one I have, so I use both terms) along with the scars from a subsequent lobectomy and all it does is make them move down the street to get away from the weird dude :).

Best wishes to both of you.

Take care,

Joe

yes I kept my mask look at it every night before I go to sleep keeps me in check as to what is really important

I would go with the spaghetti strainer concept dude :).

Glad, really glad, to have you back.

Take care,

Joe

The beloved Radiation mask... I like you thought it was gonna be a hockey type mask, to protect my face, how wrong I was. The radiation mask is used to hold your head and neck still during treatments. If you go online and then to Google, key in "Radiation Mask" you can see a link to "YOU TUBE" and actually can see some informative video clippings filmed at MDAnderson, you can also click on images, and you can see photos. I dont know what it is made of, they get a huge sheet of it wet, it gets all warm and actually feels good when they put it on your face, I was like hmmm a mini facial, then it dried and I wasnt as excited as I was before. It molds and dries to the contours of your face. Once complete it comes with T-brackets that attach to the radiation table. Yes, your husband will lay flat on the table, and the mask will be placed over him, and he will be attached to the table. Arms will be secure and he will not be able to move.

My mask was really tight (as most are) after each treatment, it left "waffle" type imprints on my face. Treatment sessions lasted about 15 minutes, with most of it being "set up" time. The actual treatments I think lasted 7 minutes. No pain during treatments, just lay there and listen to the music in the background and the machine just moved around me and zapped away. :)

I was very nervous, but once I got through the first couple treatments, I calmed down.

My doc recommended Aquophor for use to help heal the skin. I used in religiously as often as I could (cant put it on before treatments as they dont want anything on the face) but I caked it on after each treatment. That and 100% aloe vera gel. I really didnt start showing burn until the last week of treatments and then it was only like a weird sunburn. I have pictures of my face on my last day of treatment. Just click on my username and look at the photos.

Please feel free to email me or post here, or if you just want someone to talk to, you can email me at my personal email address sirenaf40@aol.com. I had no one to talk to or help me that had "experience" and I would have loved to have someone say, Ive been there, done that, got the scars to prove it.

Hang in there, the road to recoverey is a long one, but the experiences along the way will make you and your husband appreciate the little things sooo much more :)

Sirena

Hi
I too was diagnoised with Stage IV cancer in the left tonsil and had swollen lymph nodes from cells in them. Our choices were surgery or chemo and then 7 weeks of radiation and chemo together. The surgery sounded pretty bad even though the chemo was rough I am glad I went that way. The chemo really took it's toll so your husband needs to be prepared for that but it worked for me and shrunk the tumor until it did not show on a CT scan. Be sure to get a PEG tube for feeding, it was a life saver for me and get it before treatment starts. Get plenty of fluids. This helps with both the chemo and radiation. As for the radiation the worse effects I have is mouth sores. They are bad enough that right now I can not eat by mouth. I have 9 more treatments so i am almost done. Of course like anything medical it will require some recovery time after that. As for my skin I am using Neutrogena oil free lotion to keep my outer skin moist. I apply it after treatment and at bed time. Yhis is a scary journey and my best advise is get all the information you can. Write questions down as you think of them and take those to the doctor. You have to be an advocate for your husband as I found out while on the chemo or medications I thought I was "of sound mind" but really missed some signs and got in troubl health wise a couple of times by not getting enough fluids. I was also blessed with a strong support of prayer from friends, family and my church. Good luck it is not all dark there is a light out there.
Tim

Two other thoughts in addition to the great responses you got:

>> It's primary purpose is to provide 1/2mm. accuracy during each "shot" of the IMRT. In my case, the machine moved 6 times on each side of my neck, total 12, each with a duration of from 16 seconds to slightly over one minute. Precision with delivery is key to killing the cancer and containing the residual effects so that you have less good tissue damage which will have a bearing on taste buds, saliva glands, recovery time, etc. going forward.

>>Do whatever it takes to endure the mask. If claustraphobis is an issue ask for Ativan, Xanax or something similar. In my case I had to start out with 1.5mg. Ativan because (and I didn' know) come to find out my chemo contained a large dose of a steroid that really increased my anxiety. (my wife loved it, because on those days I would be up to midnight cleaning the house, vaccuming, washing dishes, folding clothes......just could not sit still.) I figured out the problem early on and asked if we could reverse the procedures on chemo day such that on that one day I would do IMRT before chemo. It really made a difference.

>>GET THE PEG tube if the Doc recommends it. Even if not used it is a good idea to have it in by the end of the 2nd or 3rd week of treatments. If you wait too long your health may have deteriorated to the extent that the placement procedure could be that much tougher on the patient.

>>Go to see a Dentist with HNC experience if at all possible. He will talk to you about a strict regimen using non-alcohol mouthwash (such as Biotene), liquid Lydocaine for soreness, Miracle Mouthwash for prevention of mouth sores and yeast infection.

>>In my case for skin care I found out from a fellow survivor about Emu Oil. I used it religously for 2 weeks prior to treatments, all during and for a few months afterwards. Never had more than a minor sunburn effect. I know there are others too, but Emu Oil worked very well for me and it has for others that I have recommended it. Very important that he not use it before the treatment but carry it in the car so that immediately afterwards he can apply it.

>>HYDRATION AND NUTRITION: again, if recommended, get the PEG. Take a notepad and note everything that goes through it. You will probably get a prescription for a liquid nutrient. They will calculate the number of calories he should have in order to maintain a certain weight. Follow that to the letter. Also, for water, through the tube shoot for at least 80 ounces a day. Toward the end of treatments I was taking 100+ and still had to go to the treatment center for rehydration IV. Radiation will really sap the liquids from his system. Also, as treatments advance consider making the water intake 50% Pedialyte. My Doc recommended that an it helped. Again, adequate hydration and nutrition are key to recovery and withstanding the treatments so that you get this done the first time.

>>Tell your husband to take something by mouth as often as he can but at a minimum of once a day, if even only a glass of water. This will keep his swallow mechanism active. If he should go without swallowing for even a few days he may end up having to have therapy to retrain that mechanism. It may be that his throat gets too sore to swallow even water, but he has to do it at least once a day. That is what the liquid Lydocaine is for. Short term deadening of the throat.

>>Pain management, as in all cases, is critical too. If he wants to be a tough guy, and we all do, he has to manage the pain as well. By that I mean if he gets to feeling too bad it will affect his attitude about treatments, about exercise, oral care, adequate PEG hydration/nutrition, etc. And that will affect his prognosis. In my case, toward the end of treatments, I used Roxicet syrup (liquid Percocet). You take 1/2 to 2 oz. of it through the PEG and it will really do the trick. It is habit forming though so be careful of extended use. Ask his Doc for his opinion. You may want it standing by.

>>Radiation continues to work in your system for 2-4 weeks after the last treatment. He will start feeling better shortly but continue to force the oral care, the hydration and nutrition minimums, etc. He can't let his guard down just yet.

OK.......a lot to ponder. Let me know if I can help in anyway. (jkinobay@gmail.com)

JK

Hello Needhope 1, I was diagnosed with Stage lll SCC of my left tonsil. May 31st I just celebrated my 8th year cancer free. I had my tonsil and tumor removed and 33 radiation treatments. I never had the feeding tube put in but should have because I lost 40lbs. and was very sick and weak.
The best thing that we found that I could get down was Breyers Vanilla Ice Cream mixed with Vanill Boost. I lived on that for quite awhile. I lost my taste to some things but still eat them.
Aquafor is the best for the burning. It's cooling and not greasy.
Good Luck and hang in there.
If you want to contact me: sslobodnik@yahoo.com
Sharon

You just got the power class from several well-spoken people!

I would heed all of their advice, and, in particular, note the advice re the anti-burning agents. It is imperative that your hub not neglect this vital aspect of his treatment. It is critical that the agent he uses NOT be petroleum (or oil) based. I think jkinbay suggested emu oil, which is new to me, and someone else advised aquaphor, which is not. In my case, I used something called Biafene (sp?). The main thing is that it should be water-based rather than oil/petroleum-based.

My rad treatments took longer than some have estimated, and I took a tiny valium pill, frankly (prescribed) before each morning's nuking until I finally, in the last couple of weeks, got sort of used to it. Whatever gets you through the night and all of that, you know?

I must say that, in my opinion, you have received some excellent advice from those who have previously posted.

Best wishes to your husband and his family, including his primary caregiver.

Take care,

Joe

Hello Needhope 1,

I hope you and your husband are doing well. By now I am sure you know what the mask is and how it is used. It is an important piece of TX. I highly recommend a sedative of some sort prior to each radiation TX. It helps. Make sure he uses and keeps the G-Tube clean. He will need it. For me, I kept weight on by using the G-Tube and eating small soft things during the day. I would use the G-tube at night with the pump. So, I would continue to work my swallowing muscles during the day. They really take a beating from the radiation. Remember too, that each patient is different and reacts and heals different from the next. So when you read these posts, take that into consideration. I am a six year survivor of SCC at the base of tongue and had 3 lymph nodes removed from the right side of my neck. The surgery was the easy part, the Chemo and Radiation was the hard part. When TX finished in 12/03 I could only eat meatloaf, ice cream and drink water. I was also using the G-Tube at night taking in about 4000 calories a day and still losing weight. It seeks when I finished TX is when I really started to lose weight, your body takes a beating from the Cancer TX and it requires a lot of nourishment when it is recuperating. I have finally leveled off at 193 lbs at 6 feet. A little on the skinny side, but I can live with it. When I left the hospital I left the mask behind. I did not want it for a trophy or reminder of what I went through and it spooked my wife. Finally, make sure you have a good support system around you and call on friends and family to help. And take some personal time for you to re-charge batteries when your husband is at home resting or have someone other than you take him for a TX. You need to maintain your health and especially your psychological health. As both will be taxed as you BOTH go through Treatment. Feel free to email me at pmfennell@myfairpoint.net. anytime you have a question or want to vent. I understand. Keep a journal. Both my wife and I did this and we both visit them from time to time to reflect on those challenging days. Take care and be well to you and your husband.
Pete

This has to be the longest thread on the site. I kept my mask, I would have kept the small one also, the one used in the MRI machine, but they had already tossed it out. I don't know what I will do with it. It is not something that reminds me of a bad time, I have the real life left over effects to do that. In fact radiation to me wasn't as bad as the chemo. I really had a rough time with chemo and it makes me sick just thinking about sitting in the room getting my doses. Oh well I am done with treatment, the last radiation was two weeks ago and the last chemo was on Monday of that same week. I still have some burning on my neck and my throat is still not taking food, some mouth sores are still present but they are getting better. All this to say my mask is a symbol of survival. I made it through and plan to finish strong. I will probably not hang it in the living room but I may hang it in the garage to strike up conversations to those who don't know my story. I plan this to be one of sucess. Thanks to all of the people posting on this site with sugestions and advice. Information is the key to easing the fears the word cancer causes. God bless all of you and those of you in this journey keep your eye on the prize, getting past the treatment and to the recovery.
Tim

I kept my mask as well. I had to wear my mask for every treatment. I completed my radiation in 2003 but it still remains a vivid memory. The burning and pain in your throat and mouth will persist for months but you should be able to eat within a month or two. I was oxycodone and hydrocodone but due to the fact that they made me feel terrible I would wait until I was in excruiating pain before I took it. I had no trouble getting off the pain meds. Did you receive amifostine?

I just finished my last radiation treatment yesterday and I kept my mask. I have several reasons for keeping it. I want a constant reminder of how precious life is and that no matter what your circumstances are you need to live each day like it could be your last. It will also serve as a daily reminder that I need to take good care of my health, eat better, exercise, etc. I can also use it to show any of my friends and family who still smoke what could happen to them.

I'm not sure where I will keep it but I do know I want to decorate it with bright colors to make it a little less scary to look at :) Or maybe I could put dried flowers in the holes and make a floral arrangement - haha!!

It's just such an incredible feeling to look at it and know I will no longer have to be bolted to the table with this thing on my face. I feel like I am a VERY lucky person.

I thought of mine as a very important part of my Cancer-Fighting-Team. Thanks to that mask they were able to deliver precise doses to precise locations within 1/2mm. accuracy in 12 zones for each of 35 daily treatments. Thanks to that technology, which includes the mask, now almost 2 years later I am NED, I have about 90% of my taste and saliva back, and I am loving life.

So, though they can be a horrible challenge at first, imagine the treatments without them.

Congratulations again.............JK

I did not keep mine. It represented to me all the moments of stark fear that I had to endure. I had no choice. A commitment had been made. I said I would do what ever it takes. Each day those words haunted me. Never getting better.

I looked at some of the masks in the gallery you posted. I am surprised at how the majority of the masks depict a good vibe or happy face so to speak.

Only one mask came across with with any emotion that I could relate too. Must be why I am having a hard time feeling better. It does give me courage when I read of good things about these masks. That mask represents to me a saying that is in life very true. It only takes on aw shucks to wipe out a hundred atta boy's It is very apparent I need to get through this stage of my recovery.

Bad things happen to good people, but nothing happens with out God knowing it and giving you the strength to go through it. Happiness, laughter, is some of the best healing medicine you can take when having cancer. As far as fear goes we all have fear, fear of the cancer coming back, fear of dyeing, and fear of what is next. I learned to put though fears in Gods hand and look forward, now just being with my wife and grand children is all a man could ask for in life. You made the right choice and you are here to tell about it; you did not do it alone God was there too all the way giving you strength, and covering your fears.

Of course God has been with me. I seek and welcome God into my life. Without the prayers of family and friends I would not be here. I do have a tendency to not see what God has given me. Which produces more guilt which in turn brings more prayer. Letting go is easy. Not taking the guilt back on is what I seem to have problems with.

I have only been a member for a short time but from the moment I entered I have felt at home. I feel better every time I post. Thanks Hondo and all the members of the forum.

I had been counting down each radiation treatment until the last. The week I started my last chemo my Oncologist sat me down and told me that the worst was over, one more chemo and then healing. (2nd chemo toxic and had very bad time) That last week of chemo and the few rads into the next week I actually found myself feeling good, anticipating the finish line I guess. After that last rad I knew that each day I would feel just a little bit better than the one before. They asked me if I wanted my mask, I told them to throw it away! They did give me a "certificate of completion" which I gladly accepted but haven't given that mask a second thought. It's time to get my wife and kids back to normal. They gave up any normalcy of life for 3 months while I went through this and now it's time for me to put everything back on track as soon as possible. I could not have done it without any of them. I had to push the Doc a bit to get my PEG out ASAP but that went away on Friday. Been back to work 3 weeks. Been playing ice hockey with my 10 year old 3 weeks. I just want to put this behind me.

Mike

Mike

That is good news glad to hear you are now one of the old guys with everything behind you. Keep up the positive attitude it will help you heal faster; take care may God bless you and all your faimily

yep, i kept it. i am not usually a violent woman, but i intend on using it for target practice, and then.....i am gonna burn it. :)

i, too, am leaning towards taking it to the shooting range. it's in a box in a friend's garage right now.

I just got fitted for mine yesterday. I think after using for six weeks I will take it and throw it in a corner and decide at a later date how agressive I want to be,

I did keep mine but bowth my kids and wife said it scares them and I should get rid of it . I have it hanging on a wall in a fishing hutt out back , not sure why ? but there is something about putting on that mask 33 times and how you feel the last week of treatment just makes it hard to throw away I guess , reminds me of the movie ALIENS .
I realy hope the kind lady that is just starting treatment doesnt get upset by all this ? once you have survived it we have a different view .
The mask is very important to keep from radiating the wrong areas , Nothing realy starts hurting until your well aware of what,s going on my friend.
Be strong and get in their and fight , It will all be over in a month or so than you can heal .
Not sure about keeping the mask ? Let us know

I also don't know why I kept it....lobbed it to the back of a high closet shelf and occassionally freak myself out when i found it. Want to get rid of it, but is not the sort of thing you put in the trash! How many years do you think it would take to biodegrade? So the big question - what do you do if you kept it, but don't know what to do with it when you want to get rid?

Have to say, although I hated it, it was a turning point in my life as my life has never been the same since I had it - my whole way of swallowing, the constant sniffs, hearing aids and tinitus, my unique way of keeeping balanaced, the constant bottle of water and panic if I have lost it...it is really part if the new me that after 8 years shows no sign of going away.

It sat in my Dining Room for a few months, One day I had a Emotional cancer ride, I had a freind over and told him to get the thing out of my sight!!!!, It was part of treatment, but unfortunately i was overcooked, and little angry....ot's gone!!!!!...lOL Dennis, I don;t want to see it either.

Hubby brought mine home to show the grandson's. It is now in the garage waiting to go to the dump! The sooner the better.

My mask is sitting on the living room floor by the coffee table. It is awaiting a truck ride to the country where it has an intimate date with my Marlin 30-30 lever action rifle. I need to adjust the sights and the mask is the perfect theraputic target.

Rush

Love your plan of action lol!

I too brought mine home but have no idea why. My son has a friend who is 15 who had cranial radiation and he told me he kept his and painted it like Spiderman. I know when I look at it it is nothing but a reminder. I think I am going to let my grandson use it for Halloween...he says it makes the perfect "Jason" mask. For now it is just buried where I don't have to see it.
Debbie

PS Rush...I really do love your idea...maybe I will just my fiance have it use for the same purpose..lol.

Twinkle lights! Lol! I still need to blast mine for target practice and then burn it. I forgot about it.

Tomorrow is the last day of rads...yeah! But at the beginning of all this, my husband talked about keeping his mask. Thanks for the reminder! Twinkle lights in his mask next month for his 60th birthday. Perfect!

Where you been man....hope your finding sometime for fishing up in the TarHeel State....

Best,
John