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NEXT PHASE OF TREATMENT

luv4lacrosse's picture
luv4lacrosse
Posts: 1392
Joined: Jul 2010

Today was the longest amount of time I have spent away from the couch and TV. I had my first Appt. with my Radiation Oncologist. My wife and I like him allot. He is going to consult with my Surgeon and his colleagues to determine if giving radiation to the left side of my neck where there is NED is warranted. He says due to the aggressive nature of the cancer in the right side of my neck, it might be a good move. I see my Surgeon tomorrow afternoon. The Radiation Doc seems to think that my saliva glands will be permanently comprimised and that my taste will be effected temporarily. He also discussed the possibility of burns and sores may develop but says everyone reacts differenly. He also thinks there is a good chance that where he applies the radiation i could have no further growth of hair. I have always shaved my head so baldness is a non issue, but I may have to let go of my goatee as the right side could have the hair loss.

I start my radiation treatments on September 8th and went throught my simulation where the fitted me for my mask. Man, the mask is going to take some getting used to. I felt like it was hard to get a full breath of air into my lungs and even had to force myself to yawn to fill them. They tell me they will give me a light sedative before I start. I also had a head and neck CT scan today that I hope my surgeon will have the results for tomorrow.

I also plan to see my Chemo Doc in the nxt 3 days to a week to discuss that plan.

Any advice on dealing with the mask or side effects is greatly appreciated.

Mike

Hondo's picture
Hondo
Posts: 5791
Joined: Apr 2009

Just relax or focus on something in the room while the mask is on. You might also get them to cut holes in the mouth and eyes area to help you better adapt to wearing it.

All the best to you my friend, keep the move going forward to a survivor the finish line is just ahead.

luv4lacrosse's picture
luv4lacrosse
Posts: 1392
Joined: Jul 2010

Thanks for the idea with the mask. I will mention this when I show up for treatment.

BEST!!

Mike

fisrpotpe's picture
fisrpotpe
Posts: 1338
Joined: Aug 2010

Mike

I am not one to paint a rosey picture when the thorns await. The hardest part for me while laying their clamped to the table was just that. Once they cut a couple holes at my mouth and eye's there was huge relief. Ask to have the holes, they tend not to offer then. Might take a couple requests.

The real problem with side effects is just the unknown. Your doctor is so right that everyone reacts to chemo and radiation treatments differently. I suggest you use the thought of What? So What! Now what? each time a new side effect starts to show it's ugly head. The major side effects I see in everyone who has done this treatment are... drymouth, sores in mouth, mucuss in back of throat, hard to swallow with both liquids and food, stiff neck, reduced ability of mouth to open fully, the feeling your neck is swollen/tight and it really is not or very little you can not see.

The most important way of dealing with these treatments is to keep a Positive Mental Attitude. It's not the physical aspects that get to you the most but the bad attitude along with physical side that takes you down. Use the Positive strength!

Reach out to those hear that have been thru it with questions and updates often. A tremendos support is given here that is not available everywhere.

Good luck.... God Loves Everyone!

John

timreichhart
Posts: 195
Joined: Aug 2010

I had to wear the mask also and they didnt want to cut any holes for the eyes for some weird reason and when I had the mask they fitted me for a mouth piece like the football players wear to keep everything straight while the radiation treatments was going on. My advice to you when you wear the mask just get relax and try take a nap while this radiation treatment is going on that is what I did just relax and take a nap for 15mins.

luv4lacrosse's picture
luv4lacrosse
Posts: 1392
Joined: Jul 2010

Great advice, and another way to look at my situation.

Thank you for offering your input, it is appreciated.

Mike

charles55's picture
charles55
Posts: 87
Joined: Aug 2010

Mike, at first, the mask's confinement really bothered me, but it was a short lived anxiety. My treatments were twice per day for six weeks. After just a few times, I understood the pace, and the repetition just started to make it feel routine. When I lost a little weight, even in my face, it fit a tad looser; that was more comfortable. The machine always moves around you the exact same, so you might fill the time counting to yourself the seconds it spends in each position and the movement. Remember, you are not being held down, you are doing some heavy duty cancer cell zapping.

JUDYV5's picture
JUDYV5
Posts: 392
Joined: Jun 2010

I didn't have any skin problems with the radiation. I did apply lotion to my neck after radiation and at night. Even though I did not like the sensation of being bolted to the table I did not have any anxiety. I was able to focus my attention worlds away for those
35 days. The salvia problems really didn't start until 1/2 way through the treatment. I did have constant issues with thrush. Never stop swallowing. Good Luck.

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

Some folks try to meditate during rads; some do visualization (cancer cells getting zapped and dying off); some actually nap. I zoned out, and listened to my tunes. Ask your technician - my center let me bring in CDs to listen to during rads - it made me feel better to have "my" music playing (or comedy routine). A couple days, I just listened to the radio. It also helped me to think that my head wasn't bolted down to trap me, so I could not avoid damaging rads shot into my head and neck - instead, the mask was helping me to hold still, so areas that didn't need damaging rads wouldn't get hit, and only the areas needing treatment would get it.

As for side effects, I kept my doc's office informed of side effects as they arose - this was great for issues with a drug remedy - for issues with practical remedies, this site was very helpful.

As always, eat, eat, drink, drink, drink, swish gargle and spit, swish, gargle and spit. Do well.

luv4lacrosse's picture
luv4lacrosse
Posts: 1392
Joined: Jul 2010

Thanks so much for the insight to your personal experience. This is some real good info here. Knowing this several weeks in advance will help me to prepare.

BEST!!

Mike

kimmygarland's picture
kimmygarland
Posts: 313
Joined: Aug 2009

the more you know - the better. My husband takes the "what I don't know won't hurt me attitude" and that drives me crazy.

He is claustrophobic and the mask was difficult for him. They cut out the holes for eyes, mouth, and he still had to take a xanax before treatment. Then, toward the end of treatments (last 10 I'd say), he started getting nauseas before every treatment. He was pretty miserable and afraid he was going to have to throw up while bolted to table. He said the techs reassured him he would be ok and they could get to him. He never threw up, but by the end he was pretty heavily medicated prior to each treatment - between the xanax and the nauseau meds.

Other than that - he was pretty lucky. Once he got past the mucous, which lasted a couple of weeks, he has done pretty well. He did not have a feeding tube and eats pretty much what he wants to, with some difficulty swallowing but not a lot.

He did have pain and started on the fentanyl patch about 1/2 way through treatment. Make sure also, that you get magic mouthwash - it's great for swishing around your mouth right before you try to swallow something.

Skin - we put pure aloe gel on Bob's neck after every treatment and through the day. I was constantly rubbing that stuff on his neck. His skin held up well until the last 3-4 days and then he had a small split area (for lack of a better term). Definitely use something. Your doc may recommend something, ours did the aloe gel.

It's not easy. Prepare your caregiver too... she'll be busy dispensing medication, trying to make you eat, etc. It's a busy time for all, but before you know it, it will be over and you'll be on the road to recovery.

Hal61's picture
Hal61
Posts: 656
Joined: Dec 2009

Hi Mike, I'm glad you have a plan. My mask anxiety got better once I trusted my radiation techs. I talked to them about how fast they could get me out of the mask if I raised my hand. They convinced me they would be down the hall like sprinters out of the blocks if I needed them, and that made it easier for me to relax.

My treatment time, 35 rads 3 chemos, was so busy and intense I passed a lot of it in a fog, which was good. I'd get up in the middle of the night and walk around my apartment, alternately shedding and putting on a sweater as I walked. More than one occasion the situation made me laugh. The mucous, what Soccer Freaks called "the thick ropey stuff" was so resilient I could never quite stop spitting it out at the sink, it just kept coming out in a continuous stream like those colored scarves a magician pulls out of his mouth. It occurred to me it would make excellent motor oil.

Anyway, for me there were lots of times it was wierd enough that I seemed to be an observer, and I didn't mind that. May it pass like a strange dream for you.

Hal

Greg53's picture
Greg53
Posts: 830
Joined: Apr 2010

Hey Mike,

A buddy who went thru similar treatment told me to find my Happy Place when I was strapped down with the mask. Sounds corny, but worked for me. 5 minutes before I went in I would do deep breathing exercises and by the time I was strapped down I was re-living a vacation or some happy memory. Mine were normally fishing trips. I know other people used music or repeated phrases. In reality I had no problems with the mask. It was uncomfortable at first but after a week I had lost weight and it loosened up. Until then, it's the dreaded waffle-head(credit David for that term). The only time when my experience was bad was when the mucus got so bad I was throwing up all the time due to a quick gag reflex. This was the last 2 weeks of treatments. Throwing up was bad, but as others metnioned being strapped down and having that possibility made me a bit nervous, but the rad techs were the best. They really took care of me and made me feel comfortable. I still go in to see them when I go back for appointments.

You should have a good 2 or 3 weeks before the effects start up. Probably start with sore throat and nasty sores on tongue. Good you know about them, just can't worry about them.

Hang in there Bro'!

Greg

luv4lacrosse's picture
luv4lacrosse
Posts: 1392
Joined: Jul 2010

The mucous seems to be what I hear about the most. I too have a sensitive gag reflex. I will just deal with it as it comes.

Take care

Mike

JUDYV5's picture
JUDYV5
Posts: 392
Joined: Jun 2010

Near the end of the radiation treatments when them the mucous was bad (I have a sensitive gag reflex also) I would spit then force myself to drink a couple gulps of water before I got on the table. The treatment seemed to be over before the mucous would build up again.
It was something that worked for me.

Bigfuzzydoug's picture
Bigfuzzydoug
Posts: 154
Joined: Jul 2010

It's sort of plastic mesh so breathing is easy enough. I do some self-hypnosis relaxation techniques when I lie down and that helps. I actually don't like the plastic neck pillow more than the mask - I find it puts some pressure on the back of my neck. But I can handle it. If they don't have a radio or music playing in the room, maybe bring your own so you have something to listen to during the treatments.

The one thing I learned is to CHECK THE MASK BEFORE THEY PUT IT ON! Take a quick look for any stray hairs and give your face a quick wipe. There's nothing worse than a little hair tickling your nose inside the mask! Aaaaaaaaa!

luv4lacrosse's picture
luv4lacrosse
Posts: 1392
Joined: Jul 2010

Great advice, thanks much. Do you also have your arms secured along side of your legs with a little tension? They do this to me and it too is a little frustrating.

How are the side effects?

BEST!!!

Mike

Fire34
Posts: 352
Joined: Feb 2010

Mike
My arms were not secured. The techs gave me a ring to hold onto, and placed an angle type pillow under your knees. My signal for help was to completely bend my legs up and they would come running. My worst time was when it felt like you had the proverbial itch LOL that you couldn't get too. Never thought of BigFuzzy's idea though.
I am a little claustrophobic but being able to breath helped that anxiety part of it. I had a refit the middle of my third week due to weight loss. Like others I just slept thru mine.
Best Wishes & Prayers on your treament
Dave

luv4lacrosse's picture
luv4lacrosse
Posts: 1392
Joined: Jul 2010

Thanks for the info. I am trying to not think about it now and just see how it actually goes. I felt somewhat claustrophobic when I had my simulation. I am sure I will adjust accordingly as treatment moves forward.

BEST!!

Mike

Scambuster's picture
Scambuster
Posts: 975
Joined: Nov 2009

Mike I posted many months ago and there is a good thread somewhere on this ' Surviving the mask'..

I found it helpful to practice breathing through your mouth, then consciously switch to your nose and reverse. You can then try to breath in and out of both mouth and nose at the same time. Do it in a relaxed controlled way so you are 'in control' of your breathing. Breath in steady and deep. As treatment progresses you can get heavy mucus and sometime gag a bit so learning how to calmly switch from mouth to nose will alleviate any panic if things get a bit blocked up in your mouth.

Also have a good hack and throat clear before you get on the table and I also used a nasal spray 5 minute prior to going in which also helped.

Music is very important and learn a relaxation routine and you will just 'zone out'. it passes very quickly.

Scam

Glenna M's picture
Glenna M
Posts: 1580
Joined: May 2009

Hi Mike, when I was fitted for my mask they had my arms pulled down and secured but I was told this was only done while they were fitting the mask. It helps pull the shoulders down. During all (35) of my radiation treatments I was just told to keep my arms at my side but they were not secured.

Hope your treatments aren't too harsh, just remember that many others have been through the same thing and survived...and so will you ;-)

Take care and stay strong,
Glenna

pascotty's picture
pascotty
Posts: 164
Joined: Aug 2010

Hi Mike, I didn't find the mask too bad. After the first one or two you just do it without worrying about it. The staff are normally fantastic, I asked them to turn the music up while I was having my treatment. One day they forgot to put the music on and it seemed as if the treatment went for triple the time. So music was my saving grace, it helped me tune out. I lived on Sustagen 3 times a day, that helped keep my energy up and also I made a juice every morning. Best of luck to you, and remember it is only such a short time out of your life, to save your life. Cheers Jen

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