mask and on going treatment. Aug 23 2013

jackflash22
jackflash22 Member Posts: 524 Member

I had my mask made and fitted today. Wow... they really do fit tight I couldn't open my mouth more than fraction and it pressed on my neck scar. But after a few minutes it was OK. Didn't care to be fastened down. They CT scanned me in it and put a blue dye in my vein. I had a small tottoo on my chest.  Then they let me go. I start 19th Sept  for 6 weeks treatment. I have the tongue base and both sides of my neck and front of neck so its an all rounder. I,m now to be fitted with a PEG tube but haven't the date yet also to see the dentist. I shall have to start from scratch again with the eating, at the moment I'm eating normal foods and swallowing normally but the technician said for a while I'll have a swollen throat and maybe sores inside my mouth and no saliva or taste buds but they come back after a few weeks when the treatment has finished.  Should be OK for Xmas. Here's hoping

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Comments

  • corleone
    corleone Member Posts: 312 Member

    I had a different diagnoses (nasopharyngeal carcinoma) and different treatment, but radiation might be the same. I had it for 7 weeks, so you either get a lower dose, or the same total dose, but more intensive with each session. While the recovery phase is very different from person to person, it might take longer than anticipated. The taste and saliva might come back in months, rather than weeks. Also for me the worst time was 1-2 weeks before and 1 week after finishing the radiation. I am 1 year post radiation, and things are great, but saliva is ~40% back, and taste is still off (but I am used with that, I can eat everything (food, of course :-), with the help of some water).

     

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    Ummmm Maybe...

    Hi you.....

    Hardly anyone has the tat anymore, they're so much precision these days... My mask was so tight, I'd leave with waffle face and forehead everyday.

    As for the tech's comments... I'd consider those side effects, very much on the side of a near not reality. I hope I'm wrong, but most everyone has a lot more sever reaction than a swollen throat or a few sores...

    The greater reality is that you will more than likely have a very painful throat when it comes to swallowing, hence the PEG. Myself and a few others had no PEG, but we were in the 8 - 10 week range of pretty much liquids calories, Ensure Plus for me, Boost, etc... preceded with the MM to numb the throat a little, and some liquid meds for the after pain.

    Pain from the rads is usually most intense about 2-3 weeks in, to around 3- 4 weeks after.

    Usually several cans of Ensure and 2-3 glasses of water a few times each day to maintain calories and hydration.

    Also, I would swallow a few sliced peaches in light syrup to keep those swallow muscles working..., important so as to keep them working.

    As for taste and saliva, again..., more than likely your talking in the months range if not longer... It took me nearly two years to get all taste back, especially sweet.

    But I did regain enough within a few months that I could have survived if it never got any better..., which it did.

    At two years I had 100% taste, and around 95% saliva, only drying out a little at night during sleep...., I'm now going into my 5th year post Tx..., clean and clear.

    Hang tough, prepare for the worst, hope for the best.

    John

     

  • donfoo
    donfoo Member Posts: 1,771 Member
    keep reading

    hi,

    Glad you are progressing with your treatment. Just to add that chemo-radiation is quite harsh and it takes a couple months post treatment to get to where you can eat much at all orally. Based on your description, radiation is going to cook most of your oral area including the parotid (salivary) glands and tongue which cause lack of saliva and taste issues.  You may want to be prepared that this holiday season will be like no other. You do have the PEG so you can have your Turkey day meal whipped up and sent down the tube. A few things may go downt the orally but don't expect much. Just trying to give you another perspective on healing. 

    There is lots of experience here so read a lot and ask away when not clear.

    Good luck,

    don

     

  • donfoo
    donfoo Member Posts: 1,771 Member
    Skiffin16 said:

    Ummmm Maybe...

    Hi you.....

    Hardly anyone has the tat anymore, they're so much precision these days... My mask was so tight, I'd leave with waffle face and forehead everyday.

    As for the tech's comments... I'd consider those side effects, very much on the side of a near not reality. I hope I'm wrong, but most everyone has a lot more sever reaction than a swollen throat or a few sores...

    The greater reality is that you will more than likely have a very painful throat when it comes to swallowing, hence the PEG. Myself and a few others had no PEG, but we were in the 8 - 10 week range of pretty much liquids calories, Ensure Plus for me, Boost, etc... preceded with the MM to numb the throat a little, and some liquid meds for the after pain.

    Pain from the rads is usually most intense about 2-3 weeks in, to around 3- 4 weeks after.

    Usually several cans of Ensure and 2-3 glasses of water a few times each day to maintain calories and hydration.

    Also, I would swallow a few sliced peaches in light syrup to keep those swallow muscles working..., important so as to keep them working.

    As for taste and saliva, again..., more than likely your talking in the months range if not longer... It took me nearly two years to get all taste back, especially sweet.

    But I did regain enough within a few months that I could have survived if it never got any better..., which it did.

    At two years I had 100% taste, and around 95% saliva, only drying out a little at night during sleep...., I'm now going into my 5th year post Tx..., clean and clear.

    Hang tough, prepare for the worst, hope for the best.

    John

     

    FYI

    Hardly anyone has the tat anymore, they're so much precision these days

    Hi John,

    FYI - They did give me a tiny tatoo right on the midline on my chest. It was used everyday to get the rough body alignment onto the platform/bed. There were other markings on the mask to enable more fine tuning of the beam.

  • phrannie51
    phrannie51 Member Posts: 4,716
    Glad to hear

    that the anticipation of getting the mask was worse than the reality....phew.   Looks like your "plan" is about to unfold....for the time being eat as much as you can, of anything you want.....having a few extra pounds at the beginning of treatment is a good thing.

    Getting the PEG tube is no big deal....about 40 minutes beginning to end.  Expect some cramping the first couple of days....but after that my biggest gripe was inconvenience....like where to tuck the darn thing. Laughing 

    John (Skiffen) calls the days of radiation....Groundhog Days....just like the movie.....every day the same....it becomes a routine, and will pass faster than you can imagine at this time, looking ahead....but once you've entered treatment mode, time flys by.

    Once you get into treatment....keep this site close to you.  The folks here are SO knowledgable....and supportive.  It's the details about treatment that I needed help with....from mouth sores to constipation....these folks have a lot of tricks up their sleeves to make this as doable as possible.

    p

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    happy for u that the mask

    happy for u that the mask fitting is over and u r now ready 2 start tx.  i have to agree w/john, the recovery/healing from tx is going to take longer than you were told.  i finished my tx on 10/22/09 but could not eat for Thxgvng or Christmas.  i think it was more like feb. b4 i could eat anything.  i don't remember how long i suffered w/dry mouth.  i only had rad so i can't comment on chemo side effects.  i wish u the very best and as few side effects as possible.  keep us posted on your progress. 

    dj

  • TracyLynn72
    TracyLynn72 Member Posts: 839
    Ah, the mask

    Mine was very tight at first and it pressed on my scars a little, too.  I lost so much weight during rads that it got looser as weeks went on.  Everyone reacts so differently to treatment...my friend just finished 33 treatments and still has some taste and no saliva issues at all.  I did 30 and had a rough time.  It's good that you are getting the PEG now.  I got so sick I had to have it put in during treatments.  It truly is no big deal to have it put in (or taken out).  I was very nervous about it, but it was totally fine :)  I had just started eating well (after surgery) when I started my rads.  It was like starting all over, but I'm thankful to have made it through, to be well and on the other side.  You'll get there too. I would let them snap me down to that table and start praying for everyone taking care of me.  I got to know them by name and would pray for them one at a time.  Before long, my treatment was done before I was finished with my prayers!  :)  This site is so wonderful and the people on here are very caring!  I'm 2 months out of treatment and doing quite well! 

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    I am a wordy one today

     

    Jackflash22,

    I am glad the mask fitting went so well.  Did you get eye holes?  We all have plenty of  tips for making radiation treatment as comfortable as possible, from playing music, to wiggling around, to counting, praying and taking Lorazapam, to name a few,  just ask when you are ready.

    We are all over the place with how good or how bad the side effects will be, just know, we all made it through, we all learned how to treat and how to cope and virtually nobody gets all the bad side effects.

    I went through 2 PEGS, but managed to drink one meal a day and had my PEG pulled out at 2 weeks after treatment ended.

    Even though my mouth was in bad shape it never hurt too much. My radiation oncologist once said “your throat and mouth are ablaze, doesn’t it hurt”, it did hurt but was manageable.  I consumed many bottles of Magic Mouth Wash for aid in swallowing and throat, tongue and mouth pain.

    My worst pain was from the neck burn during weeks 6, 7 & 8.  Applying Silver Sulfadiazine Cream made it a nonissue.

    The number one thing I learned from my fellow H&N participants was to keep swallowing and drink lots of water.

    Finally, losing one’s taste buds is unlike anything you’ve ever experienced.  When I was told I might, it did not really register.  Ever so slowly my taste and saliva are returning and I now eat anything I want.

    Get ready, the Superthread has a good list of must haves.

     

    Matt

     

  • jim and i
    jim and i Member Posts: 1,788 Member
    Praying all goes smoothly for

    Praying all goes smoothly for you. Remember to stay hydrated and to do swallowing exercises. Those muscles do not come back if you do not use them.

    Debbie

  • hwt
    hwt Member Posts: 2,328 Member
    jim and i said:

    Praying all goes smoothly for

    Praying all goes smoothly for you. Remember to stay hydrated and to do swallowing exercises. Those muscles do not come back if you do not use them.

    Debbie

    Good wishes

    Good wishes for an uneventful tx. My cancer was of the jaw. I never lost my taste , did not have to deal with mucus and my neck turned brown at the end and peeled but never hurt or broke open. I did have horrific sores on my lips but none in my mouth and allot of fatigue. A few weeks after, I lost about 3 inches of hair at nap of neck, minor in the scheme of things. I had a g-tube which I did use but also continued to eat and drink to keep swallowing. I lost 65 pounds so my suggestion is to put on as much weight as you can now. I think everyone loses some weight. Hindsight, I wish someone had told me about the mouth exercises because i would have done them. I am currently going to Mayo and they said I have moderate trimus (or whatever you call it). Had 3 or 4 bouts of thrush with initial tx, If your tongue burns talk to the doc, they have meds to help.Sorry you have to go thru this but it is doable. 

    Candi

  • TracyLynn72
    TracyLynn72 Member Posts: 839
    donfoo said:

    FYI

    Hardly anyone has the tat anymore, they're so much precision these days

    Hi John,

    FYI - They did give me a tiny tatoo right on the midline on my chest. It was used everyday to get the rough body alignment onto the platform/bed. There were other markings on the mask to enable more fine tuning of the beam.

    Don

    I had one too, for alignment.  It was a sharpie mark with a sticker over it for the most part.  Was so happy to wash that darn thing off :)

  • jackflash22
    jackflash22 Member Posts: 524 Member
    my mask no eye hole, no nose hole and no mouth hole, very tight

    mask

  • peggylulu
    peggylulu Member Posts: 375

    my mask no eye hole, no nose hole and no mouth hole, very tight

    mask

    Holes

    Mine didn't have any  either . It did not come down to my shoulders thought I wish it would have because I lost so much weight before I finished my treatments I could move quite a bit . I had to concentrate and keep telling myself don't move ! It will bother you less and less as you get used to it . I had so much mucus I worried I would get chocked , but realized real soon if I had a problem they would be right there to take it off . I only had to do that one time . Good luck to you with your treatments .

  • Roar
    Roar Member Posts: 269 Member
    I had the tattoo

    I had the tattoo as well- almost 9 months since my last treatment and all taste has not been restored. Stay positive - ask for a seditive if the mask makes you nervous- I had them cut out the eyes so I felt a little less closterfobic. Do what you have to do to get the cancer out then worry about side effects. But like a few others have stated with me it was more like a case of sun poisoning in my mouth and throat for a short while. Take the pain meds when its time and you will be fine- sta well rested and drink plenty of fluids- keep up the caloric intake. While you can still eat and taste go have your favorite meal and a nice bottle of wine and enjoy. As a matter of fact stuff yourself with all your favorites  as long as you can as you are about to go on the cancer diet and probably lose 20 or 30 pounds- I know I did.

    good luck with your battle my fellow warrior- you are about to enter the survivors club

    Ralph

  • jackflash22
    jackflash22 Member Posts: 524 Member
    Roar said:

    I had the tattoo

    I had the tattoo as well- almost 9 months since my last treatment and all taste has not been restored. Stay positive - ask for a seditive if the mask makes you nervous- I had them cut out the eyes so I felt a little less closterfobic. Do what you have to do to get the cancer out then worry about side effects. But like a few others have stated with me it was more like a case of sun poisoning in my mouth and throat for a short while. Take the pain meds when its time and you will be fine- sta well rested and drink plenty of fluids- keep up the caloric intake. While you can still eat and taste go have your favorite meal and a nice bottle of wine and enjoy. As a matter of fact stuff yourself with all your favorites  as long as you can as you are about to go on the cancer diet and probably lose 20 or 30 pounds- I know I did.

    good luck with your battle my fellow warrior- you are about to enter the survivors club

    Ralph

    mask

    Thanks for the advice I was going to ask if it would be possible to make a small hole over my mouth dont mind the eyes so much whenever I get in a situation I can't handle I close my eyes even in an over crowded train, our underground trains pack in like sardines you are body to body (you wouldn't know who to slap if you had your bottom pinched ha ha). I did try to open my eyes but then I couldn't shut them my eyelashes stuck on the mesh. I'm told its over very quickly the most time is taken getting you in the correct position then your zapped and out again. I was really nervous of my MRI scan never been near one before. I took 3 diazapan before going for the app't. By the time I was placed in the scanner I was high as a kite. I just lay there perfectly relaxed pretending I was sunbathing in the garden and the first noise was my neighbour mowing the grass then the bang bang noise was that horrid kid next door kicking his football into my fence (as he does when its nice enough to be outside) then theres a gentle noise of an aeroplane high in the sky. ( i told you i was as high as a kite)Then after no time at all I was sliding out and I thought ..finished..sigh of relief, then the blighters basted me with blue dye and shoved me back into the microwave for a few minutes. I think I could do it un-diazapanned next time now I know its not as claustraphobic as I thought, I was in the new wing thats got the state of the arts equiptment, if I opened my eyes I could see the theatre. The light even shines through your eyelids so its like lying in the sun. I wasn't scared of the CT and dental scan. My arms in hospital and since have had so may injections and bags and pipes attached I'm getting very gun-ho about them.  I guess its an adventure, like an army training course you come out the other side a stronger person. I know I wont take life for granted any more. I have pondered whats life all about since becoming a senior, each day you get up do the same routine go to bed ,like groundhog day. I will make sure I will get a life and do things differently when I recover, I've been in a rut for some time. My partner doesn't help he doesn't go outside of the home and garden except once a week to the shop. He wont come on holiday with me or socialise. Good things I have a large family. Once a year all the branches of my family hire a huge house somewhere in the countryside and we all get together for a weekend of fun, the ages range from babies to my ex who is the oldest  (we've always stayed family I get on with his wife and looked after his son years ago when i lived in Cyprus and he and Anne came to stay. Theres about 20 of us every year. We start off with a fancy dress party and then some fun days. I look forward to that but thats only once a year, Pete  (him indoors)wont come. I do go to my sister in Florida for a month each year but this year I have had to cancel the flight its a week after my treatment finishes. Reading back on this I guess  I do have a fun life. I do ramble but thought it might be a change to ramble about my life than always about 'cancer'  You can stuff 'that' up your jacksie, cancer I mean'  must go 'him indoors' has just made me a coffee, will have a couple of ginger biccies with that

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member

    mask

    Thanks for the advice I was going to ask if it would be possible to make a small hole over my mouth dont mind the eyes so much whenever I get in a situation I can't handle I close my eyes even in an over crowded train, our underground trains pack in like sardines you are body to body (you wouldn't know who to slap if you had your bottom pinched ha ha). I did try to open my eyes but then I couldn't shut them my eyelashes stuck on the mesh. I'm told its over very quickly the most time is taken getting you in the correct position then your zapped and out again. I was really nervous of my MRI scan never been near one before. I took 3 diazapan before going for the app't. By the time I was placed in the scanner I was high as a kite. I just lay there perfectly relaxed pretending I was sunbathing in the garden and the first noise was my neighbour mowing the grass then the bang bang noise was that horrid kid next door kicking his football into my fence (as he does when its nice enough to be outside) then theres a gentle noise of an aeroplane high in the sky. ( i told you i was as high as a kite)Then after no time at all I was sliding out and I thought ..finished..sigh of relief, then the blighters basted me with blue dye and shoved me back into the microwave for a few minutes. I think I could do it un-diazapanned next time now I know its not as claustraphobic as I thought, I was in the new wing thats got the state of the arts equiptment, if I opened my eyes I could see the theatre. The light even shines through your eyelids so its like lying in the sun. I wasn't scared of the CT and dental scan. My arms in hospital and since have had so may injections and bags and pipes attached I'm getting very gun-ho about them.  I guess its an adventure, like an army training course you come out the other side a stronger person. I know I wont take life for granted any more. I have pondered whats life all about since becoming a senior, each day you get up do the same routine go to bed ,like groundhog day. I will make sure I will get a life and do things differently when I recover, I've been in a rut for some time. My partner doesn't help he doesn't go outside of the home and garden except once a week to the shop. He wont come on holiday with me or socialise. Good things I have a large family. Once a year all the branches of my family hire a huge house somewhere in the countryside and we all get together for a weekend of fun, the ages range from babies to my ex who is the oldest  (we've always stayed family I get on with his wife and looked after his son years ago when i lived in Cyprus and he and Anne came to stay. Theres about 20 of us every year. We start off with a fancy dress party and then some fun days. I look forward to that but thats only once a year, Pete  (him indoors)wont come. I do go to my sister in Florida for a month each year but this year I have had to cancel the flight its a week after my treatment finishes. Reading back on this I guess  I do have a fun life. I do ramble but thought it might be a change to ramble about my life than always about 'cancer'  You can stuff 'that' up your jacksie, cancer I mean'  must go 'him indoors' has just made me a coffee, will have a couple of ginger biccies with that

    MASK Time

    The CT or PET doesn't bother me, as I can see through the back side of the machine. I did use a little Xanax the first few days of Rads and the mask. But I got used to the routine fairly quickly and no longer needed the Xanax.

     

    Like you say, it only takes about 12 - 15 minutes for the treatment, once it starts.

    You can usually take music, leave a CD etc... That is a very good time reference for me.. With each song being a few minutes long, Tx is usually over in 4 - 5 songs.

    Where in Floirida, that's where I live... Central Florida for me, Lakeland. I have met several from this forum, meeting two more within the next month or so... Duugie, and my bud of several years Dawn (SweetBlood22)...

    Best,

    John

     

  • jackflash22
    jackflash22 Member Posts: 524 Member
    Skiffin16 said:

    MASK Time

    The CT or PET doesn't bother me, as I can see through the back side of the machine. I did use a little Xanax the first few days of Rads and the mask. But I got used to the routine fairly quickly and no longer needed the Xanax.

     

    Like you say, it only takes about 12 - 15 minutes for the treatment, once it starts.

    You can usually take music, leave a CD etc... That is a very good time reference for me.. With each song being a few minutes long, Tx is usually over in 4 - 5 songs.

    Where in Floirida, that's where I live... Central Florida for me, Lakeland. I have met several from this forum, meeting two more within the next month or so... Duugie, and my bud of several years Dawn (SweetBlood22)...

    Best,

    John

     

    florida

    My sister lives in Melbourne on the Space coast she and I are into into making dolls www.facebook.com/SpaceCoastDollArtists. both hers and my dolls are on there if you want to have a look

  • jackflash22
    jackflash22 Member Posts: 524 Member
    Skiffin16 said:

    MASK Time

    The CT or PET doesn't bother me, as I can see through the back side of the machine. I did use a little Xanax the first few days of Rads and the mask. But I got used to the routine fairly quickly and no longer needed the Xanax.

     

    Like you say, it only takes about 12 - 15 minutes for the treatment, once it starts.

    You can usually take music, leave a CD etc... That is a very good time reference for me.. With each song being a few minutes long, Tx is usually over in 4 - 5 songs.

    Where in Floirida, that's where I live... Central Florida for me, Lakeland. I have met several from this forum, meeting two more within the next month or so... Duugie, and my bud of several years Dawn (SweetBlood22)...

    Best,

    John

     

    MRI

    Did you have the MRI its like a long tunnel your whole body goes through it's that one I was scared of going into as the only a little space all around you and its quite deafening, your encased in it.

  • jackflash22
    jackflash22 Member Posts: 524 Member
    peggylulu said:

    Holes

    Mine didn't have any  either . It did not come down to my shoulders thought I wish it would have because I lost so much weight before I finished my treatments I could move quite a bit . I had to concentrate and keep telling myself don't move ! It will bother you less and less as you get used to it . I had so much mucus I worried I would get chocked , but realized real soon if I had a problem they would be right there to take it off . I only had to do that one time . Good luck to you with your treatments .

    mucus

    Its the mucus that I'm afraid off, I get quite bad musus already and a  tickle and cough, if I think about it it gets worse, I also hate lying on my back when I cough, but I'll get over it as you say. I'm one of these people who always 'what if' then be OK after.  

  • jackflash22
    jackflash22 Member Posts: 524 Member
    hwt said:

    Good wishes

    Good wishes for an uneventful tx. My cancer was of the jaw. I never lost my taste , did not have to deal with mucus and my neck turned brown at the end and peeled but never hurt or broke open. I did have horrific sores on my lips but none in my mouth and allot of fatigue. A few weeks after, I lost about 3 inches of hair at nap of neck, minor in the scheme of things. I had a g-tube which I did use but also continued to eat and drink to keep swallowing. I lost 65 pounds so my suggestion is to put on as much weight as you can now. I think everyone loses some weight. Hindsight, I wish someone had told me about the mouth exercises because i would have done them. I am currently going to Mayo and they said I have moderate trimus (or whatever you call it). Had 3 or 4 bouts of thrush with initial tx, If your tongue burns talk to the doc, they have meds to help.Sorry you have to go thru this but it is doable. 

    Candi

    thank you

    Its 7 weeks since my neck dissection and tongue cancer removal and I have lost a stone in weight already I'm 10 stone and 5ft 5 which is my weight for my age and height but If I go on losing now I'll be underweight in 3 weeks time when the rad starts have you any tips how to keep your weight. I have protien drinks and started to eat solid things but cant eat much of them takes me for ever chewing and swallowing, my meal has gone cold and I've lost interest. I eat fruit smoothies with extra cream and a dollop of icecream, I did start eating chocs but for some reason choc makes me cough so dont eat it any more. Today Pete is cooking a pork crackling roast with all the trimmings, some of which I can eat, (not the pork ) I'll have to blitz that but roast potato and greens I can mash in gravy but its a slow progress. I can manage brown bread sandwiches with loads of butter, mayo and cheese grated up. I still lose weight though. I've had every scan from my neck down to my abdomen and I'm cancer free there so I dont know why I cant stay the same weight as I am now. Maybe drink an extra ensure although my smoothies should have the same calories in them.