Face Mask

Darkdancer333

Talk about claustrophobic lol I got fitted for the mask today. Told them clear me nasal and mouth passage and eyes. What a horrible feeling.

Next week we start rad and I think following week is chemo.

Gearing up for the long haul. Just purchased 6 cases Boost VHC plus, a Ninja blender etc....

Doc doesnt think Taxol/Carbo is proven enough for chemo on BOT... He said that combo is more for lung.. 

He wants to go with the rash created chemo called Erbitux. I told him whatever you and the chemo doc think... I just didn't want a rash to 

add to all the other problems. 

AnotherSurvivor

While you are on a shopping

While you are on a shopping spree add at least one ifared forehead digital thermometer.  If you get a complication it is likely you will spike a fever first.  Mine literally saved my life.  I was also glad we had one of those new smart bloodpressure cuffs, and because I ended up with lung embolisms, a blood/pulse oxygen finger reader.  Add a couple of pill organizers because you will end up owning a lot of different pills.  A spiralbound notebook to collect notes on everything, but especially the name and phone number of all that cross your path.

Chemo is a strange creature.  For what seems like it would be standard, different oncs have strong biases.  Same thing with nutrition tubes and ports.  Mine wouldn't touch Cisplaten, pretty much does only carbol-taxol, almost never does a nutrition tube, and waits quietly until you have been stuck about 50 times before he recommends a PICC line port. 

I'd also be aware of the existence of something called phlegm suction pump.  If you get seriously bad mucusites they make a small suction pump that has a plastic wand you stick in your mouth and suck up crud.  Beats spitting every 2 minutes.  My oncs were so pleased with mine that they now write optional prescription for patients to rent them from Apria or one of the home medicine equipment shops.

Early on I kept asking when the sucky part starts.  For me weeks 1&2 was a cakewalk, week 3 saw mucusites, week 4 was pulmonary embolism and a couple of meeting with the local fire dept. EMTs.  Later I learned that week 3-4 is around average for you to stop wondering when you'll feel bad.

But, I ended up without cancer, reset back to my university period weight (circa 1970s), and was all pissy today because of the length of the lift line at Snowmass this morning. 

CivilMatt

making the mask is warm like a washcloth

Dd333,

Oh what fun it is. I hope you enjoy this “once in a life time” experience.

I never liked the mask, but came to find it interesting.  I did take 1 Lorazepam every day 1 hour before zap. My mask had eye holes cut in it, it was a very handsome mask as masks go.

I had a whole procedure for rads.  Eventually, it was  take a Lorazepam, sip, swish and swallow a hit of Magic Mouth Wash in the parking lot, go pee, drink some water, swish and gargle some water, rub my arms and face to make myself ready, put on some classic Rock-n-Roll and “do it”.

You will figure out what works for you.

I had Erbitux and I got a real zit like rash all over my face and torso.  Mine never itched, but my fingers cracked, my middle toe nail fell off, my eye brows and eye lashes grew…. I did not know we could tell the doctor  NO RASH, if that was the rule then I want a (do over) and I want my old taste buds and saliva back, I don’t want a runny nose, or dry mouth, I especialy want my neck to have the same appearance as before.  I used to (very accurately) guess peoples age.  Not anymore, you are all old.

There is no masking how I feel about cancer treatment.

Matt

Darkdancer333

I have a feeling its going

I have a feeling its going back to Erbitux. On top of everything I didnt want to deal with a rash. 

Darkdancer333

AnotherSurvivor said:

While you are on a shopping

While you are on a shopping spree add at least one ifared forehead digital thermometer.  If you get a complication it is likely you will spike a fever first.  Mine literally saved my life.  I was also glad we had one of those new smart bloodpressure cuffs, and because I ended up with lung embolisms, a blood/pulse oxygen finger reader.  Add a couple of pill organizers because you will end up owning a lot of different pills.  A spiralbound notebook to collect notes on everything, but especially the name and phone number of all that cross your path.

Chemo is a strange creature.  For what seems like it would be standard, different oncs have strong biases.  Same thing with nutrition tubes and ports.  Mine wouldn't touch Cisplaten, pretty much does only carbol-taxol, almost never does a nutrition tube, and waits quietly until you have been stuck about 50 times before he recommends a PICC line port. 

I'd also be aware of the existence of something called phlegm suction pump.  If you get seriously bad mucusites they make a small suction pump that has a plastic wand you stick in your mouth and suck up crud.  Beats spitting every 2 minutes.  My oncs were so pleased with mine that they now write optional prescription for patients to rent them from Apria or one of the home medicine equipment shops.

Early on I kept asking when the sucky part starts.  For me weeks 1&2 was a cakewalk, week 3 saw mucusites, week 4 was pulmonary embolism and a couple of meeting with the local fire dept. EMTs.  Later I learned that week 3-4 is around average for you to stop wondering when you'll feel bad.

But, I ended up without cancer, reset back to my university period weight (circa 1970s), and was all pissy today because of the length of the lift line at Snowmass this morning. 

I want my ideal weigh  back

I want my ideal weigh  back 140 lol Now i am at 160 and i cant add a pound...........

 I am tring to avoid the port.......... being needleized is no biggy for me.. 38 shots in the mouth the other day to remove 5 teeth. LOL those hidden nerves are very devious..

I want to avoid erbutx and go with carbo/ taxol rad doctor doesnt like that but chemo doc said it would work.. So im rooting for chemo doc lol

I am going to research the pump.. I meet the chemo team the 21st same day i start my rads

Thx for the input

 

CivilMatt

Darkdancer333 said:

I have a feeling its going

I have a feeling its going back to Erbitux. On top of everything I didnt want to deal with a rash. 

need to know

Dd333,

There are side effects (possible and some permanent) all chemo type drugs.

Matt

Dean54

Got use to the mask

I hated that mask so bad when they first made and left so depressed that day I thought I would die. By the time the first rad. came around I pretty much excepted it and it wasn't all that bad most days. The offered it to me as a souvenir. LOL I declined....

dwp155

Hang in there!

Get to know your radiation techs and tell them you are freaked out - they will help!  I ended up sleeping during treatments.  While you are stocking up get some "Throat Coat" tea.  That is the name and you can get it in the coffee and tea isle at most groceries in the herbal tea section.  With honey it saved my life.  Good luck and prayers!

MikefromWinthrop

Erbitux

 My father also had SCC base of tongue and 1 lymph node, 5 years before mine. He has Erbitux along with radiation. other than the rash, he did not have any other identifiable side effects. Still no evidence of disease, he is 79 and still a volunteer fireman

OKCnative

I still have my mask (they

I still have my mask (they gave it to me when treatment ended). I'm not claustrophobic so that wasn't an issue for me. Plus, the center I went to made the radiation experience very comfortable. Nice clean facility that looked like a high end hotel. The techs would greet me with a smile and call me by name. They'd ask how I was doing and if I needed them to request a nurse to meet with me after my treatment. They'd also offer free mouth rinse solutions to take home that were great. Once I was bolted down to the table they'd turn on the music of my choice and turn the lights down. Honestly, I fell asleep most treatments (lasted 15-20 minutes each). 

My only concerns where on days when the mucous was so bad I didn't know if I could lay there for 15 minutes without needing to spit or choke. They told me they could see me on video and if I raised my hand that meant they needed to stop and get the mask off me. That never happened, but it gave me comfort. They'd also let me know when we were down to say 5 minutes and two minutes.

Darkdancer333

OKCnative said:

I still have my mask (they

I still have my mask (they gave it to me when treatment ended). I'm not claustrophobic so that wasn't an issue for me. Plus, the center I went to made the radiation experience very comfortable. Nice clean facility that looked like a high end hotel. The techs would greet me with a smile and call me by name. They'd ask how I was doing and if I needed them to request a nurse to meet with me after my treatment. They'd also offer free mouth rinse solutions to take home that were great. Once I was bolted down to the table they'd turn on the music of my choice and turn the lights down. Honestly, I fell asleep most treatments (lasted 15-20 minutes each). 

My only concerns where on days when the mucous was so bad I didn't know if I could lay there for 15 minutes without needing to spit or choke. They told me they could see me on video and if I raised my hand that meant they needed to stop and get the mask off me. That never happened, but it gave me comfort. They'd also let me know when we were down to say 5 minutes and two minutes.

on your mask did they have

on your mask did they have the eyes cut out as with nostrils and mouth

OKCnative

Darkdancer333 said:

on your mask did they have

on your mask did they have the eyes cut out as with nostrils and mouth

They offered, but I declined.

They offered, but I declined. No real reason, it just didn't bother me. Has no effect on the radiation itself, so do what is most comfortable.

The best decision I made thouggh was to have my radiation first thing in the morning (7:00-7:30am). It made me get up every morning and I got it over with first thing.

Suez39

Face mask

I'm a newbie to this site. Any good suggestions on how to overcome the fear of getting a mask fitting? Appt tomorrow and feel real netvous! Ugh.. 

 

 

 

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Suez39

dwp155 said:

Hang in there!

Get to know your radiation techs and tell them you are freaked out - they will help!  I ended up sleeping during treatments.  While you are stocking up get some "Throat Coat" tea.  That is the name and you can get it in the coffee and tea isle at most groceries in the herbal tea section.  With honey it saved my life.  Good luck and prayers!

Hey dwp I thx for your

Hey dwp I thx for your comment. You said you slept during treatments. What meds were you taking? My fitting is soon and I have no meds for that. Kinda freating me out.

Suez39

Face mask

Did anyone just have the nose and mouth cut outs? If so did that help?

 

 

OKCnative

Suez39 said:

Face mask

I'm a newbie to this site. Any good suggestions on how to overcome the fear of getting a mask fitting? Appt tomorrow and feel real netvous! Ugh.. 

 

 

 

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For me it was no big deal - I

For me it was no big deal - I just chalked it up to "yet another new experience."

I talked to some people that were prescribed a mild anti-anxiety drug they took prior to their mask fitting.

I just closed my eyes, went to sleep and hoped I didn't drool.

CivilMatt

Suez39 said:

Face mask

Did anyone just have the nose and mouth cut outs? If so did that help?

 

 

I will just have the nose and mouth, thank you. Eyes extra?

Suez39,

The fitting is like a warm washcloth on your face.

I did take 1 Lorazepam for treatments.

I did not like the mask, but came to find it interesting.

I had eyes, nose and mouth holes.  I liked it.  Some teams do not put in the holes and some say no holes, but my team complied.

You should do fine; ask questions, your team is there to help you through treatments.

Matt

DanceSkater

Suez39 said:

Face mask

Did anyone just have the nose and mouth cut outs? If so did that help?

 

 

I had holes

I had holes for my eyes, nose, and mouth.  It was done without me asking.  I had to have a hole for my mouth because they used upper and lower mouthguards that were put in my mouth after the mask was attached.

Suez39

Face mask

Thank you everyone for ur feedback. I appreciate it! Hope I do ok with my fitting tomorrow. I would like eye holes too. That would help me tremendously but doc says no. I will try to get him to give me eye sits but will see how that works out for me. Lol I've seen so many doctors nurses etc. Have to get ur protein drinks throat excersizes etc. Feel alittle overwhelmed. Ugh...

Suez39

Face mask

Meant eye slits. Typing fast cause very thirsty and getting something to drink!

Darkdancer333

Suez39 said:

Face mask

Thank you everyone for ur feedback. I appreciate it! Hope I do ok with my fitting tomorrow. I would like eye holes too. That would help me tremendously but doc says no. I will try to get him to give me eye sits but will see how that works out for me. Lol I've seen so many doctors nurses etc. Have to get ur protein drinks throat excersizes etc. Feel alittle overwhelmed. Ugh...

I ordered 7 cases BoostVHC

I ordered 7 cases BoostVHC plus andywhere from 360-525 calories

Overwhelmed know the feeling lol this Wednesday is 9am dental appointment just to see how extractions are coming along, 1140 1st rad appointment, 1240, Chemo group meeting, 1400 therapist. I told her Ive You-Tubed the exercises so we may cancel that appointment.