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Radiation smell and lights

asiaamy
Posts: 14
Joined: Jul 2011

Hello. I have just joined and hope you can help me. I was diagnosed in May 2011 with Npc stage three and started treatment on June 1. I have had three rounds of chemo Cisplatin latest being this Monday. Started radiation and just did 8th treatment today.

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....

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

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!

asiaamy
Posts: 14
Joined: Jul 2011

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.

David_Green_Bay
Posts: 1
Joined: Feb 2013

Hello,

My name is David, I have a brain tumor and after being reviewed by my Neurosurgeon and a tumor board they have decided surgry is not an option due to location to brain stem. I was referred to a Radiation Oncologist and it has been determined that my best treatment is 5-6 weeks of daily Tomottherapy.

Probably only natural I am scared and not sure what to expect, the posts here have given me some idea. I am very nervous and already suffer from anxiety. Even during an MRI I would take a Xanax before the MRI. With the Tomotherapy, the mask and being even more importmant not to move I know I will want to take something to be as relaxed as possible.

Did your Oncologist prescribe the Valium? What was the dose and how long before the procedure did you take it?

My treatments should be fairly qucik, I was wold a few minues for the CT scan then 3-5 minutes for the radiaton dose. I am hoping if my Oncologist will prescribe the Valium between that and some music perhaps I will make it through this ok.

I also have to have a feeding tube placed later this week before Tomotherapy starts, the tumorhas caused dysphagia and I can not swallow much, since problems started on Nov 3, 2012 I have lost 27 lbs and was thin to begin with. I am also dehyrdated from not being able to swallow much fluids and has resulted in low blood pressure, average 80/50.... So I need to embrace the feeding tube and get some strength back..

Any suggestions or experiences you can share to help me be preapred for Tomotherapy would be greatly appreciated!

 

Thank you!

David

Skiffin16's picture
Skiffin16
Posts: 8058
Joined: Sep 2009

First, you might have more response either by posting a new thread either here of on the Brain Cancer Forum...

But onething you won't have to worry about concerning moving turning the mask and rads. Your head, actually the mask is bolted to the table... Not to scare you, but just give you a heads up...

My chemo MD actually prescribed my meds (Xanax)... It was awesome for me, don't remember the doasage. But I'd take it about 45 minutes before rads started. For me I could drive myself to and from Tx. But each are different, so make sure you have someone with you the first few times...just incase you can't drive.

The Xanax just knocked the anxiety edge off for me... one small pill...

It would make me lythargic later in the day. So After the first few days, I started cutting them in half, by the second week, I was use to the routine and no longer needed them.

My rads sessions were on the average maybe 12- 15 minutes in the mask.

Best

John

George_Baltimore's picture
George_Baltimore
Posts: 303
Joined: Jun 2009

I don't doubt that you needed something to calm down.  I just wish I had thought to ask my doc to prescribe something.  My med onc liked MRI's.  My head was locked down for 55 minutes during the MRI.  It was bad enough being in the tube but then, to have this thing practically right on your nose was something else.  Your radiation sessions won't be that bad.  As John said, your head will be locked down so that you don't move but the treatments don't take that long.  Either your rad or chemo doc should be able to prescribe something.  A couple years ago, I was prescribed Ativan for something else.  Oh my goodness, how such a small pill can knock you out.  I ended up taking only a half a tablet and that took the edge off things.

As far as the feeding tube goes, that sounds like it's a must.  You'll be a little sore for a couple days but it shouldn't last long.  It's so much easier getting your nutrition and hydration that way especially if you are having swallowing difficulties.  A feeding tube, right now, is the only thing keeping my alive.  Hang in there.  Things will eventually get better for you and, if I am reading your posting name correctly, you'll be done in time to root for the Packers when they start back up again.

phrannie51's picture
phrannie51
Posts: 3634
Joined: Mar 2012

start a new thread so you can take advantage of many people answering your question.

I took 1/2 of an Atavan before every rad treatment....it most certainly takes the edge off...so well in fact that had my husband not been driving me to and from, I would have been taking many naps in thier parking lot.

p

nwasen's picture
nwasen
Posts: 235
Joined: Feb 2011

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 toughcookie

Cathelen72's picture
Cathelen72
Posts: 33
Joined: Jun 2011

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!

asiaamy
Posts: 14
Joined: Jul 2011

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...

fisrpotpe's picture
fisrpotpe
Posts: 1322
Joined: Aug 2010

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?

John

Skiffin16's picture
Skiffin16
Posts: 8058
Joined: Sep 2009

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

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

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

Skiffin16's picture
Skiffin16
Posts: 8058
Joined: Sep 2009

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

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

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.

Skiffin16's picture
Skiffin16
Posts: 8058
Joined: Sep 2009

LOL, ya, I can definitley relate to that....everyday came out with them across my forehead and smooched nose.

Hondo's picture
Hondo
Posts: 5667
Joined: Apr 2009

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
Hondo

palmyrafan's picture
palmyrafan
Posts: 398
Joined: Mar 2011

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

timreichhart
Posts: 195
Joined: Aug 2010

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.

asiaamy
Posts: 14
Joined: Jul 2011

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.

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

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.

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

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.

Skiffin16's picture
Skiffin16
Posts: 8058
Joined: Sep 2009

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

asiaamy
Posts: 14
Joined: Jul 2011

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...

Skiffin16's picture
Skiffin16
Posts: 8058
Joined: Sep 2009

You might shoot Greta on here an email...she's the mod and might be able to help you...

Best,
John

asiaamy
Posts: 14
Joined: Jul 2011

Thanks John. Stupidvquestion but how do I send her an email?

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

You can send an email to webmaster@acscsn.org.

Hope this helps.

Take care,

Joe

Skiffin16's picture
Skiffin16
Posts: 8058
Joined: Sep 2009

Orr...

You can go up to the top left CSN area, third from the bottom, "CSN Email". Click that and at the bottom left, "Write a new message"...

In the To: box type Greta...

Sure you can handle the rest...

JG

asiaamy
Posts: 14
Joined: Jul 2011

Duh! Made me laugh about as much as waffle face remark.

Thanks. And best wishes tomorrow John at your appointment.

Skiffin16's picture
Skiffin16
Posts: 8058
Joined: Sep 2009

Hoping things go great for you as well....and the next feww weeks fly by for you.

It's the time I refer to as Ground Hog's Day (like the movie)...same thing, day, after day, after day, after day.....enjoy the break on your week-end off.

I'm sure that you are going to have many more upcoming birthdays.

JG

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

Negative to the lights and smell, though Hondo's explanation makes sense. Not sure it is physically possible for lights to cause dizziness, unless maybe they're in motion and your eyes are following them.

I used 1/2-tab of Xanax the last 7 weeks of the rads, always taking within 1/2-hour of the session start. Made a major Positive difference for me. Passing out due to Xanax was not an issue. Like most, the main issue is the mask, and perhaps the need to swallow while clamped. Best thing I found was holding my mouth in an overbite position- with the backs of my top two teeth up against the front of my lower front teeth, then breathe thru my mouth. Did wonders for me.

Also NPC, keep a little something in mind: you are gonna survive this thing. The rad sessions can seem a bit of an obstacle, but trial and error until you find what you need to do to get in a comfort zone. Took me a week of rads to figure it out for me.

kcass

adrian b
Posts: 13
Joined: May 2011

It sounds like you and I are at a similar place in our treatment. I have NPC stage IV and just started my 3rd week of radiation. I am also on one of the latest Tomotherapy machines and have just found out that it is the only machine in Australia.

I have also noticed the smell and lights but mainly at the start of treatment. The smell to me is a bit like cordite and the lights are more of a blue, arc welding type flash. They seem to go after about minute for me and then go away but I guess it could depend on your particular treatment set up. I am fortunate that I tend to just let my mind think of other things and 6 mins of treatment seems to go very quick.

Adrian

Skiffin16's picture
Skiffin16
Posts: 8058
Joined: Sep 2009

Oh you are lucky...mine were about 12 - 15 minutes each day.

Like Kent, a little XANAX definitely knocks the edge off. I only needed it for a week or so, then it was routine and I was used to it.

Driving with the XANAX was not a problem for me.

Best,
John

rozaroo
Posts: 667
Joined: Apr 2010

I had to take Atavan to help me through. I remember the smell so well. They requested no perfume while in the cancer centre but I would take a fabric dryer sheet & tuck it into my bra before treatment then removed it right after! I never used to perspire & now it is horrid. However, my pharmacist brought in a great deodorant that work's like a dream.

Skiffin16's picture
Skiffin16
Posts: 8058
Joined: Sep 2009

LOL, where's Joe when you need him to reference a Stone's song.....

Fabric sheet between the b@@bs huh, hmmm now why didn't I think of that.....oh ya, no b@@bs, LOL.

JG

rozaroo
Posts: 667
Joined: Apr 2010

I am old school lol! Lot's of trick's up this gal's sleeve! You could have tucked one down your short's lmbo!
Thinking of you today John!

Skiffin16's picture
Skiffin16
Posts: 8058
Joined: Sep 2009

You are definitley one of my Abi-Normals...crazy as I am...

osmotar's picture
osmotar
Posts: 953
Joined: Jul 2011

Dryer sheets...I'll have to remeber that

Thanks for the tip

adrian b
Posts: 13
Joined: May 2011

The actual rads are for about 6 mins but you are strapped in for about 15-20mins. They do an initial scan with the mask on to compare to previous positions and treatment is adjusted accordingly. You occasionally have to re-set your position (get unstrapped, sit up and then strapped back again).

By the way, you should come fishing down this way. The fishing down this neck of the woods is sensational :)

asiaamy
Posts: 14
Joined: Jul 2011

Hi everyone. Adrian yes we are going through similar cycles. Just did my twelfth round today. 1/3 through and I am so grateful for this board and all the support as it has helped me get through these last four rounds. Can't wait to celebrate with everyone at the end.

I actually live in Tokyo but was diagnosed in hong kong and decided to stay here for treatment mainly due to cultural and language issues, but as it turns out I have access to the latest generation tomo machine. There is the original, then the hi art and then mine which is called hD which is third generation, My dr thinks that I am likely the first patient in the world to be treated for ncp under this machine. Not sure if makes me scared or happy.

I have attached a link which tells you abit more about the machine at the hospital if you are interested. interestingly enough they mention ncp in the article as many Asians particularly southern chinese descent are affected.

http://www.hksh.com/pdf/tomohd_20110308_en.pdf

But latest and greatest broke down this morning so session was delayed. My rounds are 12 mins plus 5 mins for ct.

I still see the flashing lights and smell despite their attempts to put towels or covers over. But as Adrian says only when it starts up and lasts a few mins. I really hope that my panic last week was related to nausea from chemo. I do my chemo week 2 and 5 of treatment.

Will wait to see which side effects I get longer term from hondos list...so far I have the same as everyone else, dry mouth, scalded tongue, loss of taste, fatigue and sore throat. Sure it will all get much worse as it is just starting....

Skiffin16's picture
Skiffin16
Posts: 8058
Joined: Sep 2009

You'll really be one of the gang once you have a Turkey Neck, that tingling sensation of L'Hermitte's Sign, oh and a wicked sense of humor, that only you and other cancer survivors and caregiver's not only get, but understand....LOL..

Here's the link to your article, looking forward to reading it myself.

First-in-Asia TomoHD System

Hang in there, don't forget, these are just "GroundHog Days"...

Best,
John

Netracer61
Posts: 14
Joined: Jan 2011

 Have been on all of the radiation rides, traditional, tomo and now protron beam. I have been fighting for 12 years.  With the traditional I never noticed any lights other than the lazer used to target. My first ride was horrifying, it made me realize how bad things really were. I was diagnosed with late stage esthesioneuroblastoma with a tumor that started in my sinus cavity via the sniffer nerve. It manage to erode the bone behind my left eye and between my eyes. The tumor breached the skull as well as the lining, csf fluid is nasty and it was the worst  and only headache that ever required an ambulance ride and a few days in the hospital. Just for added adventure the tumor attached to my brain and when they cut the fist sized tumor out they took part of my left frontal lobe with it.  

 I could smell the tumor burning in the first few seconds of the treatment, this was a smell that would continue for the next several months before surgery to remove the tumor. I used to look directly into the machine an I never saw any lights, I did become very close with this machine, I knew every movement, sound that it made, I would watch as the head opened and closed and watching the grid change as the field changed, the last minute was always the longest. Never ever saw a light.

 

When I had tomo, I saw no lights during treatment, other than the lasers used to position the beam. Since my sense of smell was gone, bad smell was not an issue.

 

Currently I am in my 7th week of protron beam therapy. The cancer is back in three spots and one just happens to be the optic nerve and my left eye. I do see light during treatment. I aked if I should be seeing any lights besides the obvious lazers for setup, they said no. I can tell you I see every pulse of the beam via a rapid white flash. It has not been an issue. The issue I have are the blue flashes I see when I close my eyes to sleep as well as being woken up by a flash of bright light. Its diferent for sure not to mention unnerving at times but I am still here, I still have my eye, and can see with it 20/20. 

 

Regardless of what you experience, stay positive, and in the end it will be just a memory. FIGHT FIGHT FIGHT !  God bless.

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