mask and on going treatment. Aug 23 2013

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

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

 

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.

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

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 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 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

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 said:

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

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