Warnings, hints, suggestions of things to do!!
Comments
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Spindel Cell
Welcome, not many that I run into have the Spindel Cell varient and 2 this week. WOW! Radiation will not be fun but you can do it. This site is full of wonderful support and encouragement. If you are only having radiation your hair loss will only be in the field, I lost about 1 inch at the nape of my neck and it grew back. Stay in contact with us and we will help in any ways we possibly can in cyberspace.0 -
ThanksKTeacher said:Spindel Cell
Welcome, not many that I run into have the Spindel Cell varient and 2 this week. WOW! Radiation will not be fun but you can do it. This site is full of wonderful support and encouragement. If you are only having radiation your hair loss will only be in the field, I lost about 1 inch at the nape of my neck and it grew back. Stay in contact with us and we will help in any ways we possibly can in cyberspace.
Thanks for your welcome and comments. I was concerned that the radiation would "cook" my hair follicles. I suppose the angle they radiate will determine any hair loss? I am also VERY concerned about the "mask" folks are talking about and it being bolted to the table? Sounds terrorizing!!0 -
The maskMrs. Sarge said:Thanks
Thanks for your welcome and comments. I was concerned that the radiation would "cook" my hair follicles. I suppose the angle they radiate will determine any hair loss? I am also VERY concerned about the "mask" folks are talking about and it being bolted to the table? Sounds terrorizing!!
I was one of the few that didn't have a problem with the mask. Everything went so fast for me and I wanted to KILL any bit of cancer that could have been left. The mask is a mesh with open weave. They seem to warm it a bit, not hot, stretch it over your face and then it hardens up. My techs were very nice, they always talked me through what they were doing. I found radiation a good time to pray, others took a CD and knew how long the treatment would be by the music. Once a week it was a longer session because they do a CT scan to check on everything. I saved the mask, ended up needing to use it a second time due to mets. I plan on decoupaging it with butterflies, I am not going to use it again.
Get your team ready. Family and friends are really important right now.
Where do you live by the way?0 -
The trick to enduring the mask.KTeacher said:The mask
I was one of the few that didn't have a problem with the mask. Everything went so fast for me and I wanted to KILL any bit of cancer that could have been left. The mask is a mesh with open weave. They seem to warm it a bit, not hot, stretch it over your face and then it hardens up. My techs were very nice, they always talked me through what they were doing. I found radiation a good time to pray, others took a CD and knew how long the treatment would be by the music. Once a week it was a longer session because they do a CT scan to check on everything. I saved the mask, ended up needing to use it a second time due to mets. I plan on decoupaging it with butterflies, I am not going to use it again.
Get your team ready. Family and friends are really important right now.
Where do you live by the way?
During my first treatment with the mask I felt very claustrophobic. I realized afterward that it was because the techs bolted me in and I felt trapped. At my second treatment I asked them if they could show me how to remove the mask myself if ever I felt panicked or like I needed to get it off in a hurry. They gladly obliged and they let me practice taking it off myself. After that I had 34 more treatments and never once felt constrained or claustrophobic again. I highly recommend this trick to everyone.0 -
Kteacher and SoonerSooner79 said:The trick to enduring the mask.
During my first treatment with the mask I felt very claustrophobic. I realized afterward that it was because the techs bolted me in and I felt trapped. At my second treatment I asked them if they could show me how to remove the mask myself if ever I felt panicked or like I needed to get it off in a hurry. They gladly obliged and they let me practice taking it off myself. After that I had 34 more treatments and never once felt constrained or claustrophobic again. I highly recommend this trick to everyone.
Thanks for the info. I'll try that. Teacher I live in TX...DFW area. Going to Baylor for my treatments.0 -
sedativeMrs. Sarge said:Kteacher and Sooner
Thanks for the info. I'll try that. Teacher I live in TX...DFW area. Going to Baylor for my treatments.
You can also ask you doctor for a sedative to relax you during the radiation treatments. I myself am very claustrophobic when it comes to the mask and the doctor prescribed xanax to help relax me. I take it about 45min to an hour before the appoitment, it helps me alot.0 -
Thanksstayingpositive said:sedative
You can also ask you doctor for a sedative to relax you during the radiation treatments. I myself am very claustrophobic when it comes to the mask and the doctor prescribed xanax to help relax me. I take it about 45min to an hour before the appoitment, it helps me alot.
That's a great idea. Is xanax addictive? I'm not usually claustrophobic but being bolted down doesn't sound too good!!!0 -
so far, I've only had the simulation...where they molded it to my face. When asked if I was claustraphobic I said no...not unless someone threw a blanket over my head and sat on it...after hearing about the mask on here, I thought...Holy moly, that's getting might close to the blanket scenerio.Mrs. Sarge said:Thanks
Thanks for your welcome and comments. I was concerned that the radiation would "cook" my hair follicles. I suppose the angle they radiate will determine any hair loss? I am also VERY concerned about the "mask" folks are talking about and it being bolted to the table? Sounds terrorizing!!
However, when I actually had the mask on, clamped to the table, I wasn't claustraphobic at all...come this Monday...when I not only don the mask and have radiation, I might be singing a different tune...but I don't think that will happen.
I've heard that music will take your mind away from the treatment...also prayer and meditation...whatever works for each individual. I plan to use all of these things...let my mood, my feelings for each day dictate how I will do the rads. We are on a path that will allow us to learn things we can use for the rest of our lives...Learning "one day at a time" is first on my want list.
I don't have much in the answer department...but I'll be walking beside you in spirit as you go thru treatment.
p0 -
meshMrs. Sarge said:Thanks
That's a great idea. Is xanax addictive? I'm not usually claustrophobic but being bolted down doesn't sound too good!!!
The mask is mesh anyway, you can open your eyes and see thru it, the radiation clinic i'm at has the ceiling tiles painted with different logo's and pictures. The aiming laser is actually a huge smiley face with the laser coming out of its nose. I only have two more treatments so I think i'll be ok. The techs in the clinic i'm in are very kind. The first couple times I was locked down, I kinda paniced and they let me set up for a bit and reset my center, and my treatments only last about 10 to 15 min anyway. I guess most folks could just lay there and fall asleep.
Good luck with your treatments0 -
Rads
If your problem is around the voice box, worrying about tooth damage might not be in play, as your mouth may not get the rads- let alone enough to really do any damage. Most of us notice hair loss at the bottom of our hairline in the back.
I also did 1/2-tab of Xanax just before leaving the house of the rad session. Actual time that your session will take is significant. Co-worker had a growth by his voice box, and his sessions lasted on a couple minutes with just 2-3 zappings. Max sessions can last over 1/2-hour on the days they also do Xrays, which is a long time to be locked in place, but even that is doable. Rads, themselves- you don't even feel them being applied. Mostly, problems with the rad sessions is a mental thing. And yes, I may have been a mental case.
kcass0 -
Welcome...
As mentioned Xanax works wonders as for the anxiety...
I only needed it for the first week, and started cutting them in half after the first day. After the first week I no longer needed that little edge to get me through the mask.
I know you mentioned your hair and teeth....hair will grow back an if you o get damage to both...well..frankly surviving and life is most important.
Here is a link to the SuperThread, it had tons of great info an links for newbies as you, but even long timers as well.
SUPERTHREAD
I'm going on three years post treatment;
STGIII SCC Tonsil HPV+
You mention not being a smoker or drinker...was your biopsy tested for HPV. HPV is really on the rise these days and a significant factor in H&N cancer lately.
Anyways.....
Best,
John0 -
me too
i also was concerned with my beard, did not want to loose it. what is nice now is i need to shave only every other day and there is not much there. it's good you do not have to worry like i did. :-)
i suggest that you check to see if your radiation therapy will be done with thomotherapy. this is much more pinpoint and the map around some of the things they do not want to damage. as been said don't worry about your hair it will grow back. as for the teeth keep them clean, floss and find a dentist that has alot of experience with head and neck cancer survivors.
Oh, having a positive mental attitude is 80% of kicking your cancer's back side.
john0 -
The MaskMrs. Sarge said:Thanks
Thanks for your welcome and comments. I was concerned that the radiation would "cook" my hair follicles. I suppose the angle they radiate will determine any hair loss? I am also VERY concerned about the "mask" folks are talking about and it being bolted to the table? Sounds terrorizing!!
Like you I read all the previous posts about the mask, and it scared the beejesus out of me....BUT when I went to have the mask made my doctor had given me a script for ativan for anxiety, I took one , but the whole process went very quickly. Then came the simulation of wearing the mask and being on the table, yes they do lock it down to the table, I found at that simulation the mask was rubbing my eyelids, so I asked could they cut the eyes out , once that was done every thing felt ok. I'll never say that it was fun, but you get into your own routine, and you will know when the mask isn't on your face right, for me it it didn't hit my nose in the right spot I would ask the techs to reposition it. Where I went for my treatments they used IMRT machine called RapidARC, I was on the table less than 10 mins. I never took another ativan for any of my 39 treatments. The techs are there to help you , they become like family, ask them questions, tell them when something doesn't feel right, ask if they will play music, whatever it takes to get you thru.
Linda0 -
Amifostine for salivary function retentionfisrpotpe said:me too
i also was concerned with my beard, did not want to loose it. what is nice now is i need to shave only every other day and there is not much there. it's good you do not have to worry like i did. :-)
i suggest that you check to see if your radiation therapy will be done with thomotherapy. this is much more pinpoint and the map around some of the things they do not want to damage. as been said don't worry about your hair it will grow back. as for the teeth keep them clean, floss and find a dentist that has alot of experience with head and neck cancer survivors.
Oh, having a positive mental attitude is 80% of kicking your cancer's back side.
john
There is a thread here regarding amifostine (my version was an IV drip, which in my opinion is preferable to injections)This is a drug used by some oncologists to preserve your saliva, which is very important to keeping your teeth,eating etc.
Not everyone does it, it really really worked for me. There are side effects, but the dose can be lowered. I cannot recommend it enough!
Hair..I did have some permanent partial hair thinning below the ear on the right side.
(This picture is 1 year post rads, so you can see it is not too bad, my hair being problematic anyway, as it does whatever it wants, despite my valiant efforts)
Sending healing thoughts, comfort and strength to you as you begin this journey.
Remember we are here with you at every step.
Take care
Stacey0 -
Amifostine...staceya said:Amifostine for salivary function retention
There is a thread here regarding amifostine (my version was an IV drip, which in my opinion is preferable to injections)This is a drug used by some oncologists to preserve your saliva, which is very important to keeping your teeth,eating etc.
Not everyone does it, it really really worked for me. There are side effects, but the dose can be lowered. I cannot recommend it enough!
Hair..I did have some permanent partial hair thinning below the ear on the right side.
(This picture is 1 year post rads, so you can see it is not too bad, my hair being problematic anyway, as it does whatever it wants, despite my valiant efforts)
Sending healing thoughts, comfort and strength to you as you begin this journey.
Remember we are here with you at every step.
Take care
Stacey
I'm with you Stacey...and as a plus, it helps to minimize or reduce th ethivk ropey phlegm as well...
Although like you mentioned, I wasn't crazy getting the injections into my stomach everyday just before the rads...but I definitely think it helped me.
Amifostine...
Amifostine - Another...
Amifostine - One More
BTW, nice photo of you....
Best,
John0 -
Thanks...finally was able toSkiffin16 said:Amifostine...
I'm with you Stacey...and as a plus, it helps to minimize or reduce th ethivk ropey phlegm as well...
Although like you mentioned, I wasn't crazy getting the injections into my stomach everyday just before the rads...but I definitely think it helped me.
Amifostine...
Amifostine - Another...
Amifostine - One More
BTW, nice photo of you....
Best,
John
Thanks...finally was able to retire the goat!0 -
Xanaxstaceya said:Thanks...finally was able to
Thanks...finally was able to retire the goat!
Most everyone had a different experience with the mask. For me it was no big deal at all. The first day I was really anxious because I didn't know what to expect. You don't feel a thing while being radiated so after that I just zoned out and it was over before I knew it.
A little caution with the Xanax. You will most likely be given .50mgs and believe me, that is strong. It seems to take around 45 minutes for it to work so take it early. And make sure someone drives you the first time you take it so you know how it affects you. I get really sleepy on it and am in no condition to drive.
And yes, it is addictive but only if you take several a day for months on end. I took one per day for two months and stopped w/o any problem. Some may differ on my 2¢
Stay the course and it'll be over soon. I wish you well.
Tommy0 -
That's a good picture of you, toostaceya said:Thanks...finally was able to
Thanks...finally was able to retire the goat!
Stacey....
Farewell goat...
0 -
The mask, and "What Chevy would do."Mrs. Sarge said:Thanks
Thanks for your welcome and comments. I was concerned that the radiation would "cook" my hair follicles. I suppose the angle they radiate will determine any hair loss? I am also VERY concerned about the "mask" folks are talking about and it being bolted to the table? Sounds terrorizing!!
I went totally "white knuckle" in about 10 seconds during the fitting trial for my mask. The mask pressed against the area of my tumor and it sent me through the roof. The techs were great by cutting away enough of the mask in that area to give me relief, but not allow me to wiggle around and screw up their targeting. I took atavin for the first 4-5 days, but after that could manage without the drugs. I did a 'mind over matter' routine where I pictured myself in some beautiful and quite place, listening to my favorite music, and put the whirring and buzzing of the rad machine far in the background. I don't meditate, but from what I've been told, it was a lot like that. Every once in a while I would feel one of the 'zaps' and cringe a bit, but most treatments went by rather quickly without any nervousness. Guar-on-damned-teed, the more you think about it, the longer each treatment will take in your head and the more stressful it will become over time. Remember what Chevy Chase's character said in Caddyshack--"Be one with the ball." In our case, we should say, "Be one with the mask--and the rad machine."
Everyone is different--find out the best way for YOU to cope with what you are about to go through, and stick with what gives you the least stress and discomfort.
Mike0 -
I knew you'd post the link for the Super ThreadSkiffin16 said:Welcome...
As mentioned Xanax works wonders as for the anxiety...
I only needed it for the first week, and started cutting them in half after the first day. After the first week I no longer needed that little edge to get me through the mask.
I know you mentioned your hair and teeth....hair will grow back an if you o get damage to both...well..frankly surviving and life is most important.
Here is a link to the SuperThread, it had tons of great info an links for newbies as you, but even long timers as well.
SUPERTHREAD
I'm going on three years post treatment;
STGIII SCC Tonsil HPV+
You mention not being a smoker or drinker...was your biopsy tested for HPV. HPV is really on the rise these days and a significant factor in H&N cancer lately.
Anyways.....
Best,
John
John...thank you. Mrs. Sarge was really needing it, and I don't know html...hell, I haven't even figured out how to copy and paste on this laptop...LOL.
p0
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