Radiation smell and lights
Comments
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contactasiaamy said:Email to greta
Thanks John. Stupidvquestion but how do I send her an email?
You can send an email to webmaster@acscsn.org.
Hope this helps.
Take care,
Joe0 -
CSN Internal Emailasiaamy said:Email to greta
Thanks John. Stupidvquestion but how do I send her an email?
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...
JG0 -
Thank youSkiffin16 said:CSN Internal Email
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
Duh! Made me laugh about as much as waffle face remark.
Thanks. And best wishes tomorrow John at your appointment.0 -
Thanksasiaamy said:Thank you
Duh! Made me laugh about as much as waffle face remark.
Thanks. And best wishes tomorrow John at your appointment.
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.
JG0 -
Xanax, etc
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.
kcass0 -
Hi AmyKent Cass said:Xanax, etc
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
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.
Adrian0 -
Six Minutesadrian b said:Hi Amy
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
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,
John0 -
Burning!Skiffin16 said:Six Minutes
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
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.0 -
Mother's Little Helperrozaroo said:Burning!
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.
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.
JG0 -
Love ya John!Skiffin16 said:
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!0 -
Dryer sheets...I'll have torozaroo said:Burning!
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.
Dryer sheets...I'll have to remeber that
Thanks for the tip0 -
In mask for 20minsSkiffin16 said:Six Minutes
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
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
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Wish it were 6 minsadrian b said:In mask for 20mins
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
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....0 -
More Sides Afterasiaamy said:Wish it were 6 mins
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....
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,
John0 -
Tomotherapysoccerfreaks 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!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
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Welcome David...David_Green_Bay said:Tomotherapy
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
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
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If your MRI was like the ones I hadSkiffin16 said:Welcome David...
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
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.
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Like John said...Skiffin16 said:Welcome David...
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
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
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