Did you keep your mask?

katartizo2000 said:

Yes, I kept my mask.
It's in
Yes, I kept my mask.

It's in the closet. Unbelieveably, as I have told my story from 10 years ago, people have not believed me... can you imagine? They think I look too healthy. So I use it as evidence!

My kids play with it sometimes.

Mask
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.

victor53 said:

ive had a few people who
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?

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

needhope1 said:

need some more info on mask and radiation, please!
Hi dear folks,

I am new here, my husband has been diagnosed with Stage IVa SCC of the left tonsil and lymph nodes. We met with the chemo oncologist yesterday who is recommending 8 weeks of chemo, 8 weeks of radiation with chemo. We will meet with the radiation oncologist next week, who I assume will explain the radiation process to us, but I would like to find out more about this "mask" you all speak of. I assume this mask is to protect your face during the radiation treatment, sounds like it looks like a hockey mask? Does it cover your entire face, do you have to get fitted for it? Also I thought I read someone said you are strapped down during the radiation process? Is there any preventative lotions to put on to prevent burning during/after the radiation?

Sorry for so many questions, any info on the radiation process and side effects would be most appreciated!

Hi Needhope
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

needhope1 said:

need some more info on mask and radiation, please!
Hi dear folks,

I am new here, my husband has been diagnosed with Stage IVa SCC of the left tonsil and lymph nodes. We met with the chemo oncologist yesterday who is recommending 8 weeks of chemo, 8 weeks of radiation with chemo. We will meet with the radiation oncologist next week, who I assume will explain the radiation process to us, but I would like to find out more about this "mask" you all speak of. I assume this mask is to protect your face during the radiation treatment, sounds like it looks like a hockey mask? Does it cover your entire face, do you have to get fitted for it? Also I thought I read someone said you are strapped down during the radiation process? Is there any preventative lotions to put on to prevent burning during/after the radiation?

Sorry for so many questions, any info on the radiation process and side effects would be most appreciated!

The mask
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

keeping my mask
I had 20 RT sessions after acinic cell cancer of the parotid gland. The last treatment was two weeks ago. I kept my mask. I intent to use it as a mould to make a sculpture of my head and neck. But now I also consider using it as part of a sculpture to celebrate the completion of my treatments. I do not know whether TR treatments differ in intesity, but reading your comments, I realise that I got off easy. The inside of my mouth is a mess bercause of the RT, nut my skin was only a little red during treatments, and after two weeks is back to normal. I am so gratefull.

San

SIRENAF42 said:

Dang Mask
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!!!!

Mask
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.

jeepie said:

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?

PET SCAN
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

sanpieter said:

keeping my mask
I had 20 RT sessions after acinic cell cancer of the parotid gland. The last treatment was two weeks ago. I kept my mask. I intent to use it as a mould to make a sculpture of my head and neck. But now I also consider using it as part of a sculpture to celebrate the completion of my treatments. I do not know whether TR treatments differ in intesity, but reading your comments, I realise that I got off easy. The inside of my mouth is a mess bercause of the RT, nut my skin was only a little red during treatments, and after two weeks is back to normal. I am so gratefull.

San

I Kept My Mask Also
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