Radiation smell and lights
The last two sessions Of radiation I have felt horrid bc of the smell and the lights. The smell has always bothered me from the first treatment and during ct scan I breathe out but harder during the actual treatment. The lights make me really lightheaded and dizzy. Has anyone else experienced this and what did you do to get through treatments. I talked to my doctor today and he suggested I take xanax or Valium. Worried it will make me pass out. But I am worried I may not complete my treatments.
I am going to be 44 tomorrow....have a 9 year old boy and 18 month old daughter and great husband. But he's not sure how to help me....
Comments
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Rads
My problem was not the lights or the smell, but the confinement, and I did, indeed, take a small hit of valium prior to every treatment under the mask.
With respect to the lights, I do believe, as with CT and PET scans, they advise that you NOT look at the lights. My optometrist wanted to test my retinas once he discovered I had had radiation to the head/neck.
I would suggest that you take music with you if they do not supply it, and use the songs on the radio (or the CD or whatever) as a timer, figuring every song to be about three minutes long, concentrating and maybe even singing along, rather than being intensely captivated by the procedure.
You apparently need the treatment, so hang in there. If valium is required, take the valium with the notion that you will eventually wean yourself of the need (I never had a problem with that: small dose). Kick out the jams, close your eyes, and get through it: if we could do it (especially claustrophobic me), then you can do it.
Take care,
Joe
PS Happy birthday!0 -
Thanks Joe. I never open mysoccerfreaks said:Rads
My problem was not the lights or the smell, but the confinement, and I did, indeed, take a small hit of valium prior to every treatment under the mask.
With respect to the lights, I do believe, as with CT and PET scans, they advise that you NOT look at the lights. My optometrist wanted to test my retinas once he discovered I had had radiation to the head/neck.
I would suggest that you take music with you if they do not supply it, and use the songs on the radio (or the CD or whatever) as a timer, figuring every song to be about three minutes long, concentrating and maybe even singing along, rather than being intensely captivated by the procedure.
You apparently need the treatment, so hang in there. If valium is required, take the valium with the notion that you will eventually wean yourself of the need (I never had a problem with that: small dose). Kick out the jams, close your eyes, and get through it: if we could do it (especially claustrophobic me), then you can do it.
Take care,
Joe
PS Happy birthday!
Thanks Joe. I never open my eyes and have music. Spend time trying to figure out when to breathe to avoid the smell. Thinking of trying Valium tomorrow. Not sure how much I need.0 -
smells and lights
Yes close your eyes and repeat to yourself; this is where I am supposed to be over and over. Take your favorite tunes and ask them to crank it (unless you are playing soft stuff)!
They offered me other drugs if I felt panicky but I always felt the mask and radiation were my friends, there to save my life (and they did!)
good luck and sorry your birthday isn't the best.....it is how I spent my 61st but I will live to celebrate my 62nd!
Peace
Nancy aka toughcookie0 -
Npc
Hi Amy. I have NPC stage three and I have 9 treatments left with my third chemotherapy session next Tuesday. You know I never really noticed any lights however I do smell something odd on occasion but not every time and usually just thought it was my mask. Are you wearing a mask? I find it very hard to keep my eyes open with the mask on. I would definitely suggest that you close your eyes. I also take a small anti anxiety drug called lorezapem. It doesn't make me feel loopy or any different at all but I do notice I just don't feel anxious about things. It has helped get me through all of me treatments thus far. Also like the others have suggested music is a huge factor. When I close my eyes I just focus on the music and before I know it my session is over. I hope it gets better for you.
Btw Happy Birthday!0 -
Lights and smellCathelen72 said:Npc
Hi Amy. I have NPC stage three and I have 9 treatments left with my third chemotherapy session next Tuesday. You know I never really noticed any lights however I do smell something odd on occasion but not every time and usually just thought it was my mask. Are you wearing a mask? I find it very hard to keep my eyes open with the mask on. I would definitely suggest that you close your eyes. I also take a small anti anxiety drug called lorezapem. It doesn't make me feel loopy or any different at all but I do notice I just don't feel anxious about things. It has helped get me through all of me treatments thus far. Also like the others have suggested music is a huge factor. When I close my eyes I just focus on the music and before I know it my session is over. I hope it gets better for you.
Btw Happy Birthday!
The smell is like a strong bleach when they start up for the ct scan. Then when the actual treatment begins I guess when they are positioning I see lots of white lights. This is with my eyes closed the whole time. Have mask on and def not the mask as the smell and lights go away during the actual treatment. Maybe bc I am using the tomotherapy machines? Sure I am not imagining it, but will try to remember what all of you say for tomorrow morning session. It is night time here in hong kong...0 -
Smell & Xanax
First welcome to the forum, awesome people here, tons of experience and knowledge is a plus.
On the bleach smell, I would smell it often also, amily when the did the X-Rays on Mondays, but often other times as well....to me it smells exactly like ozone. That could be well what it is also considering the charges and fields, etc....
Xanax was my drug of choice for the anxiety of the mask and rads....I only needed it for a week, then I was used to the routine.
I started off with one, but early evening I'd be zonked. Started pinching that in half, then a quarter....don't think I used any after the first week.
You (or I) could function perfectly well with it. I drove myself 4/5 days each of the seven weeks of concurrent chemo/rads. Most Mondays my wife went since I was having chemo also.
You'll do fine, with in a week or two you'll notice every buzz, click whirl and rotation of the machine.
Best,
John0 -
Lights and smell.Skiffin16 said:Smell & Xanax
First welcome to the forum, awesome people here, tons of experience and knowledge is a plus.
On the bleach smell, I would smell it often also, amily when the did the X-Rays on Mondays, but often other times as well....to me it smells exactly like ozone. That could be well what it is also considering the charges and fields, etc....
Xanax was my drug of choice for the anxiety of the mask and rads....I only needed it for a week, then I was used to the routine.
I started off with one, but early evening I'd be zonked. Started pinching that in half, then a quarter....don't think I used any after the first week.
You (or I) could function perfectly well with it. I drove myself 4/5 days each of the seven weeks of concurrent chemo/rads. Most Mondays my wife went since I was having chemo also.
You'll do fine, with in a week or two you'll notice every buzz, click whirl and rotation of the machine.
Best,
John
That's is so strange, I never noticed any lights or smell. I had IMRT rads tho, not the tomo. The only smell I remember smelling was after treatment one day when we were walking down the hallway on the way out, I kept sniffing and asking my step mom if she could smell something burning. She thought I was crazy. I could smell it so strong. Then I realized it was me. Cooking/burning from the radiation. Shortly after that I lost all smell and taste.
I would definitely recommend bringing in a cd to listen to. I would have never made it through without that. I had a couple that they rotated for me. My favorite was the dance music because it was fast with a great beat, and it made the time fly by. Except, it was hard to lay still, I wanted to move to the beat. Maybe with the smell, you could by a new perfume, with a scent you like, and put a tiny bit under your nose, maybe that would drown out the bleach smell? I wouldn't use perfume you currently have, that is a favorite, because there are a few things that I did, smelled, ate during treatment, that I don't want to taste, smell, or hear again because they remind me of when I was so sick during treatment. I am very sensitive to smells, and to get through peg tube feedings when just the smell of the canned nutrition was making me sick, I would put a few drops of almond extract in a cup and smell that, so I couldn't smell the canned stuff. Or, I would off a piece of fresh ginger. Something very fragrant that I enjoyed, that would mask the scent of the nutren.
Happy Birthday! Wishing you well ~
Sweet0 -
Light & Smell
I too have had NPC about 6 years ago and the smell is normal as the rad beam passing through the blood vessels in the nasal where the smell sensors are. I was told the rad beam interacts with trace metals in the blood I am not sure how true that is but it is the best I heard so far.
As for as the light you are seeing during treatment you need to tell you doctor and see if the rad beam is too close to the optic nerve. Don’t be afraid to question your doctor about your treatment, the two major side effects of being treated for NPC are blindness and deafness, both suck.
Happy B-day and welcome to the family here on CSN
Hondo0 -
Lightsweetblood22 said:Lights and smell.
That's is so strange, I never noticed any lights or smell. I had IMRT rads tho, not the tomo. The only smell I remember smelling was after treatment one day when we were walking down the hallway on the way out, I kept sniffing and asking my step mom if she could smell something burning. She thought I was crazy. I could smell it so strong. Then I realized it was me. Cooking/burning from the radiation. Shortly after that I lost all smell and taste.
I would definitely recommend bringing in a cd to listen to. I would have never made it through without that. I had a couple that they rotated for me. My favorite was the dance music because it was fast with a great beat, and it made the time fly by. Except, it was hard to lay still, I wanted to move to the beat. Maybe with the smell, you could by a new perfume, with a scent you like, and put a tiny bit under your nose, maybe that would drown out the bleach smell? I wouldn't use perfume you currently have, that is a favorite, because there are a few things that I did, smelled, ate during treatment, that I don't want to taste, smell, or hear again because they remind me of when I was so sick during treatment. I am very sensitive to smells, and to get through peg tube feedings when just the smell of the canned nutrition was making me sick, I would put a few drops of almond extract in a cup and smell that, so I couldn't smell the canned stuff. Or, I would off a piece of fresh ginger. Something very fragrant that I enjoyed, that would mask the scent of the nutren.
Happy Birthday! Wishing you well ~
Sweet
Dawn, I also had IMRT, the only lights that I remember were on the days of X-Rays.
As for the smell I would time it not to breath in during the initial zaps, that's when I would smell the ozne smell. At the beginning of each zap just after the rotation.
JG0 -
I will have to ask Patty ifSkiffin16 said:Light
Dawn, I also had IMRT, the only lights that I remember were on the days of X-Rays.
As for the smell I would time it not to breath in during the initial zaps, that's when I would smell the ozne smell. At the beginning of each zap just after the rotation.
JG
I will have to ask Patty if I ever mentioned that smell thing. I can't remember ever thinking or saying that. I think the waffle marks on my face, and the half hour of table time are the memories I remember most. Especially the waffle marks. That bites.0 -
Treatment
I agree with Joe. Instead of taking Valium or Xanax (couldn't take either one), I was able to take my own music and played songs I knew would be about the same length as my radiation treatment. Because my sessions were only 5-7 mins long each session, I usually only had to play 2 songs or 1 really long one.
Being confined and under the radiation mask (tradition radiation therapy for me) was the hard part; I did not have any problems with smells and I always closed my eyes during treatment.
I did however, experience issues with my sense of small, after radiation therapy was totally over. I still occasionally experience strange smells (15 years later) that my husband insists only I can smell.
You can also try visualization therapy. I have heard it really helps during radiation as well.
Good luck!
Teresa0 -
about the lights and smellpalmyrafan said:Treatment
I agree with Joe. Instead of taking Valium or Xanax (couldn't take either one), I was able to take my own music and played songs I knew would be about the same length as my radiation treatment. Because my sessions were only 5-7 mins long each session, I usually only had to play 2 songs or 1 really long one.
Being confined and under the radiation mask (tradition radiation therapy for me) was the hard part; I did not have any problems with smells and I always closed my eyes during treatment.
I did however, experience issues with my sense of small, after radiation therapy was totally over. I still occasionally experience strange smells (15 years later) that my husband insists only I can smell.
You can also try visualization therapy. I have heard it really helps during radiation as well.
Good luck!
Teresa
I also had NPC cancer last year and I never had the lights or smell get to me when I had the mask on while doing the 5-10min IMRT treatment each day for my cancer.
Everyday I had the IMRT treatment I went to sleep because being in that mask just made me tired.0 -
bestasiaamy said:Lights and smell
The smell is like a strong bleach when they start up for the ct scan. Then when the actual treatment begins I guess when they are positioning I see lots of white lights. This is with my eyes closed the whole time. Have mask on and def not the mask as the smell and lights go away during the actual treatment. Maybe bc I am using the tomotherapy machines? Sure I am not imagining it, but will try to remember what all of you say for tomorrow morning session. It is night time here in hong kong...
do not know about the smell but can say if your have your radiation with a tomotherapy machine to me there are none better.
have you asked your technitions or doctors what the smell might be?
John0 -
Waffle Facesweetblood22 said:I will have to ask Patty if
I will have to ask Patty if I ever mentioned that smell thing. I can't remember ever thinking or saying that. I think the waffle marks on my face, and the half hour of table time are the memories I remember most. Especially the waffle marks. That bites.
LOL, ya, I can definitley relate to that....everyday came out with them across my forehead and smooched nose.0 -
Your repliestimreichhart said:about the lights and smell
I also had NPC cancer last year and I never had the lights or smell get to me when I had the mask on while doing the 5-10min IMRT treatment each day for my cancer.
Everyday I had the IMRT treatment I went to sleep because being in that mask just made me tired.
Dear all thank you for your thoughts and support. I will see how I go this morning. Will report back later. Will try and time breaths better and talk to them about lights. Will try different visualization this morning. Wish I had joined earlier. Really helps to know that I am not alone. Thank you again.0 -
Lights and Smellasiaamy said:Your replies
Dear all thank you for your thoughts and support. I will see how I go this morning. Will report back later. Will try and time breaths better and talk to them about lights. Will try different visualization this morning. Wish I had joined earlier. Really helps to know that I am not alone. Thank you again.
So, your eyes are closed, and you can see flashes through your eyelids? I wonder if your techs would OK an old fashioned eye mask taped onto your mask. My mask kept me from being able to open my eyes, and the light I did see didn't bother me.
As far as smell goes, the only thing I've heard of to block the sense of smell is vaporub under the nose, but I can't imagine that being permitted. Would you be able to spritz your hair or shirt with perfume just before going in? Maybe like dosing yourself with a stronger smell that would override the smell you want to avoid? Good luck.0 -
Pam, I don't think theyPam M said:Lights and Smell
So, your eyes are closed, and you can see flashes through your eyelids? I wonder if your techs would OK an old fashioned eye mask taped onto your mask. My mask kept me from being able to open my eyes, and the light I did see didn't bother me.
As far as smell goes, the only thing I've heard of to block the sense of smell is vaporub under the nose, but I can't imagine that being permitted. Would you be able to spritz your hair or shirt with perfume just before going in? Maybe like dosing yourself with a stronger smell that would override the smell you want to avoid? Good luck.
Pam, I don't think they would allow the vapo rub, because of the oils in it.
I think, like I said, and you mentioned too, perfume under the nose might work, keep it alcohol based.0 -
Breathing Timing...Pam M said:Lights and Smell
So, your eyes are closed, and you can see flashes through your eyelids? I wonder if your techs would OK an old fashioned eye mask taped onto your mask. My mask kept me from being able to open my eyes, and the light I did see didn't bother me.
As far as smell goes, the only thing I've heard of to block the sense of smell is vaporub under the nose, but I can't imagine that being permitted. Would you be able to spritz your hair or shirt with perfume just before going in? Maybe like dosing yourself with a stronger smell that would override the smell you want to avoid? Good luck.
For me it wasn't a constant smell, it was only just at the initial zaps....
I learned not to breathe in at that time or breathe through my mouth to provide comfort from the smell.
JG0 -
Update on lights and smellSkiffin16 said:Breathing Timing...
For me it wasn't a constant smell, it was only just at the initial zaps....
I learned not to breathe in at that time or breathe through my mouth to provide comfort from the smell.
JG
Dear all, I told myself I am where I am supposed to be (think wasn't believing that before), put a small towel over my eyes and tried to time my breathing. Not perfect but I made it through two more treatments without Xanax. The towel is on top of the mask but they are going to try one more towel layer on Monday to see if it improves. Apparently some people have told them about the lights. The smell is at the beginning and as Someone mentioned think it's the ozone. Got the out breathing perfect on ct scan today (much easier as only one release) but not great on actual radiation almost gagged as release is several minutes with flashing lights.
FYI The hospital i am at in hong kong has just installed two of the latest tomo machines (only 4 in world so far) so hopefully my info will be helpful for others in the future as this might be particular to these types of machines?
Bc of your suggestions am going to also change my music to ones that I can sing along to...hopefully will take my mind off.
I wanted to change my user name to asiaamy. I am having treatment in hong kong but actually live in Japan....does anyone know how to do that without reregistering?
Thank you all again for your kind support. 10 down 26 more to go and one more chemo....
Ps actually went out yesterday with family to have lunch and blow out candles on cake. Can't wait for my next birthday...0 -
Name Changeasiaamy said:Update on lights and smell
Dear all, I told myself I am where I am supposed to be (think wasn't believing that before), put a small towel over my eyes and tried to time my breathing. Not perfect but I made it through two more treatments without Xanax. The towel is on top of the mask but they are going to try one more towel layer on Monday to see if it improves. Apparently some people have told them about the lights. The smell is at the beginning and as Someone mentioned think it's the ozone. Got the out breathing perfect on ct scan today (much easier as only one release) but not great on actual radiation almost gagged as release is several minutes with flashing lights.
FYI The hospital i am at in hong kong has just installed two of the latest tomo machines (only 4 in world so far) so hopefully my info will be helpful for others in the future as this might be particular to these types of machines?
Bc of your suggestions am going to also change my music to ones that I can sing along to...hopefully will take my mind off.
I wanted to change my user name to asiaamy. I am having treatment in hong kong but actually live in Japan....does anyone know how to do that without reregistering?
Thank you all again for your kind support. 10 down 26 more to go and one more chemo....
Ps actually went out yesterday with family to have lunch and blow out candles on cake. Can't wait for my next birthday...
You might shoot Greta on here an email...she's the mod and might be able to help you...
Best,
John0
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